Mialgiczne zapalenie mózgu i rdzenia/zespół przewlekłego zmęczenia

Mialgiczne zapalenie mózgu i rdzenia/zespół przewlekłego zmęczenia
Epidemiologia

Mialgiczne zapalenie mózgu i rdzenia/zespół przewlekłego zmęczenia (ME/CFS) to przewlekła, wyniszczająca choroba o nieznanej etiologii, uznawana przez WHO i US CDC za zaburzenie mózgu. Częstość występowania ME/CFS w populacji globalnej szacuje się na 0,1-2,8%, najczęściej 0,2-0,5%, z metaanalizą wskazującą na 0,68% (95% CI 0,48-0,97). W USA choruje około 1,3% dorosłych (3,3 mln), a w Wielkiej Brytanii około 0,6% populacji (390 000 osób). Choroba dotyka głównie kobiety (stosunek 3-4:1) i występuje w każdym wieku, ze szczytem zachorowań między 30 a 50 rokiem życia. ME/CFS często rozwija się po infekcji, w tym SARS-CoV-2, co po pandemii COVID-19 spowodowało wzrost zapadalności – wskaźnik ryzyka 4,93 (95% CI 3,62-6,71) w porównaniu do osób niezakażonych. Szacuje się, że pandemia mogła wywołać ponad 10 mln nowych przypadków ME/CFS na świecie. Choroba charakteryzuje się zmiennym przebiegiem, z 25% pacjentów w ciężkim stanie, często niezdolnych do pracy, co generuje znaczne obciążenie ekonomiczne – 17-24 mld USD rocznie w USA, w tym 9,1 mld USD utraconej produktywności.

Epidemiologia Mialgicznego zapalenia mózgu i rdzenia/zespołu przewlekłego zmęczenia (ME/CFS)

Szacowana częstotliwość występowania ME/CFS na świecie
Rozpowszechnienie ME/CFS w poszczególnych krajach
Charakterystyka demograficzna pacjentów z ME/CFS
Zapadalność na ME/CFS
Nierozpoznane przypadki i opóźnienia w diagnostyce ME/CFS
Czynniki ryzyka i początek choroby ME/CFS
Nasilenie i wpływ ME/CFS na życie pacjentów
Współwystępowanie chorób z ME/CFS
Rokowanie i przebieg choroby ME/CFS
ME/CFS u dzieci i młodzieży
Wyzwania w badaniach epidemiologicznych ME/CFS

Nadzór nad ME/CFS: wyzwania i perspektywy

Obecny stan nadzoru epidemiologicznego nad ME/CFS
Wyzwania w nadzorze nad ME/CFS
Innowacyjne podejścia do nadzoru nad ME/CFS
Potrzeby i zalecenia dotyczące nadzoru nad ME/CFS

Wpływ COVID-19 na epidemiologię ME/CFS

ME/CFS po infekcji SARS-CoV-2
Podobieństwa między Long COVID a ME/CFS
Szacowany wzrost liczby przypadków ME/CFS po pandemii
Implikacje dla zdrowia publicznego i systemów opieki zdrowotnej

Znaczenie epidemiologii ME/CFS dla zdrowia publicznego

Obciążenie ekonomiczne i społeczne związane z ME/CFS
Wyzwania diagnostyczne i bariery w dostępie do opieki
Implikacje dla planowania opieki zdrowotnej i polityki zdrowotnej
Kierunki przyszłych badań epidemiologicznych ME/CFS

Podsumowanie epidemiologii ME/CFS

Kolejne rozdziały

Epidemiologia Mialgicznego zapalenia mózgu i rdzenia/zespołu przewlekłego zmęczenia (ME/CFS)

Mialgiczne zapalenie mózgu i rdzenia/zespół przewlekłego zmęczenia (ME/CFS) jest poważną, wyniszczającą, wieloukładową chorobą przewlekłą o nieznanej etiologii, uznawaną przez Światową Organizację Zdrowia (WHO) oraz Amerykańskie Centrum Kontroli i Prewencji Chorób (US CDC) za zaburzenie mózgu. Stanowi ono szczególną, enigmatyczną i kosztowną kwestię zdrowia publicznego. Poniżej przedstawiamy szczegółową analizę epidemiologiczną ME/CFS.

Szacowana częstotliwość występowania ME/CFS na świecie

Częstość występowania ME/CFS na świecie różni się w zależności od zastosowanych kryteriów diagnostycznych, badanej populacji oraz zastosowanej metodologii badawczej¹. Według różnych badań epidemiologicznych szacuje się, że częstość występowania waha się od 0,1% do 2,8% populacji globalnej²³. W literaturze naukowej najczęściej podawany zakres to 0,2-0,5%⁴⁵.

W systematycznym przeglądzie i metaanalizie obejmującej łącznie 46 badań i 56 zestawów danych dotyczących częstości występowania, średnie rozpowszechnienie ME/CFS wynosiło 1,40-1,57%, zagregowane rozpowszechnienie 0,39%, a metaanaliza wykazała częstość występowania na poziomie 0,68% [95% CI 0,48-0,97]⁶. Według najbardziej powszechnie stosowanej definicji przypadku CDC-1994, częstość występowania wynosi około 0,89%⁷.

W skali światowej szacuje się, że ME/CFS dotyka około 17-24 milionów osób⁸⁹, a nowsze badania z UK Biobank sugerują, że liczba ta może sięgać nawet 30 milionów¹⁰. Choroba występuje endemicznie i dotyka wszystkie grupy wiekowe, rasy i warstwy społeczno-ekonomiczne¹¹.

Rozpowszechnienie ME/CFS w poszczególnych krajach

W Stanach Zjednoczonych, według danych Instytutu Medycyny (IOM), liczbę osób cierpiących na ME/CFS szacuje się na 836 000 do 2,5 miliona¹²¹³. Nowsze badania CDC z lat 2021-2022 wskazują jednak, że około 1,3% dorosłych Amerykanów (około 3,3 miliona osób) cierpi na ME/CFS¹⁴¹⁵¹⁶. Badanie na podstawie roszczeń ubezpieczeniowych z 2018 roku oszacowało, że liczba pacjentów zdiagnozowanych z ME lub CFS w USA może wynosić od 1,7 do 3,38 miliona¹⁷.

W Wielkiej Brytanii liczbę osób z ME/CFS szacuje się na ponad 250 000¹⁸. Badanie przeprowadzone przez Nacul i współpracowników w 2011 roku wykazało, że minimalna częstość występowania ME/CFS w Anglii wynosi 0,2% dla przypadków spełniających którekolwiek z badanych kryteriów diagnostycznych¹⁹²⁰. Nowsze badania z Uniwersytetu Edynburskiego sugerują, że częstość występowania ME/CFS w Wielkiej Brytanii może wynosić około 0,6%, co przekłada się na około 390 000 osób²¹.

W Europie przeprowadzono niewiele badań epidemiologicznych dotyczących ME/CFS. Sieć EUROMENE (European Network on ME/CFS) wskazuje, że częstość występowania w Europie waha się od 0,1% do 2,2%²². Badania wykazały porównywalną częstość występowania ME/CFS w populacjach zachodnich i azjatyckich (1,32-1,45% vs. 1,51-1,74%)²³.

W Szwajcarii dane epidemiologiczne dotyczące ME/CFS są bardzo ograniczone, a częstość występowania choroby pozostaje nieznana²⁴. Podobna sytuacja występuje w wielu innych krajach europejskich.

Charakterystyka demograficzna pacjentów z ME/CFS

ME/CFS dotyka osoby obu płci, jednakże badania konsekwentnie wykazują przewagę kobiet wśród pacjentów. Stosunek kobiet do mężczyzn z ME/CFS wynosi średnio od 3:1 do 4:1²⁵²⁶²⁷. W badaniu przeprowadzonym w Szwajcarii 72,2% pacjentów z ME/CFS stanowiły kobiety²⁸, co potwierdza ten trend. Również w kohortach pacjentów z ME/CFS w UK Biobank 74% stanowiły kobiety, co jest zgodne z wcześniej raportowaną proporcją 3:1²⁹.

Metaanaliza wykazała, że kobiety mają około 1,5-2 razy wyższą częstość występowania ME/CFS niż mężczyźni we wszystkich kategoriach badanych (2,24-2,59% vs. 1,11-1,05% dla całej populacji)³⁰. Ta przewaga kobiet obserwowana była również w licznych ogniskach epidemicznych ME/CFS, w tym w Los Angeles, Akureyri, Rockville, MD, Royal Free Hospital i Punta Gorda na Florydzie³¹.

Jeśli chodzi o wiek, ME/CFS może dotykać osoby w każdym wieku, od dzieci (nawet w wieku 2 lat) do osób w podeszłym wieku³². Średni wiek zachorowania w badaniu szwajcarskim wynosił 31,6 lat, przy czym 15% pacjentów wykazywało objawy przed 18. rokiem życia³³. Badanie przeprowadzone w Norwegii wykazało dwa szczyty zachorowań: pierwszy między 10 a 19 rokiem życia, a drugi między 30 a 39 rokiem życia³⁴. Najwyższa częstość występowania ME/CFS obserwowana jest u osób w wieku 40-49 lat³⁵.

Zapadalność na ME/CFS

Szacowana zapadalność, czyli liczba nowych przypadków ME/CFS w ciągu roku, waha się od 0,025% do 0,3% populacji³⁶. W badaniu przeprowadzonym w trzech regionach Anglii roczna zapadalność minimalna wynosiła 0,015%³⁷³⁸.

Pandemia COVID-19 przyczyniła się do zwiększenia liczby nowych przypadków ME/CFS. Badanie finansowane przez NIH wykazało, że po pandemii COVID-19 liczba nowych przypadków ME/CFS była 15 razy wyższa niż przed pandemią³⁹. W badaniu RECOVER-Adult wykazano, że wskaźnik zapadalności na ME/CFS u uczestników obserwowanych od momentu zakażenia SARS-CoV-2 wynosił 2,66 (95% CI 2,63-2,70) na 100 osobolat, podczas gdy wskaźnik u dopasowanych niezakażonych uczestników wynosił 0,93 (95% CI 0,91-10,95) na 100 osobolat, co daje współczynnik ryzyka 4,93 (95% CI 3,62-6,71)⁴⁰.

Nierozpoznane przypadki i opóźnienia w diagnostyce ME/CFS

Jednym z istotnych wyzwań epidemiologicznych w ME/CFS jest znaczne niedodiagnozowanie tego schorzenia. Według różnych źródeł, od 84% do 91% osób z ME/CFS nie ma postawionej diagnozy⁴¹⁴²⁴³. Oznacza to, że rzeczywista liczba osób z ME/CFS może być znacznie wyższa niż oficjalne statystyki.

Diagnoza ME/CFS pozostaje wyzwaniem klinicznym. Pacjenci często zmagają się z chorobą przez lata, zanim otrzymają właściwą diagnozę⁴⁴⁴⁵. Na trudności diagnostyczne wpływa brak specyficznych testów laboratoryjnych, zróżnicowane objawy kliniczne oraz ograniczona wiedza na temat choroby wśród personelu medycznego.

Opóźnienie w diagnozowaniu wiąże się z gorszymi wynikami leczenia⁴⁶. Dlatego wczesne rozpoznanie i odpowiednie postępowanie mogą odgrywać istotną rolę w przebiegu choroby i poprawie jakości życia pacjentów.

Czynniki ryzyka i początek choroby ME/CFS

ME/CFS często rozwija się po ostrej infekcji, co stanowi jeden z głównych czynników ryzyka zachorowania⁴⁷⁴⁸. Według różnych badań, od 69% do 80% pacjentów raportuje infekcję jako czynnik wyzwalający chorobę⁴⁹⁵⁰. W badaniu szwajcarskim 72,9% uczestników wiązało początek choroby z pojedynczym zdarzeniem infekcyjnym, a 80,6% z wieloma zdarzeniami, w tym infekcjami⁵¹.

Wśród infekcji najczęściej wymieniane są zakażenia wirusem Epsteina-Barr, wirusem Ross River oraz gorączką Q⁵². W badaniu szwajcarskim przed początkiem choroby jedna trzecia pacjentów zgłaszała infekcje dróg oddechowych, 15,4% infekcje żołądkowo-jelitowe, a 16,2% choroby przenoszone przez kleszcze⁵³. 77,8% respondentów wspominało o infekcjach wirusowych, z wirusem Epsteina-Barr jako najczęściej zgłaszanym czynnikiem⁵⁴.

Początek ME/CFS może być nagły lub stopniowy. Nagły początek często następuje po zespole grypopodobnym (gorączka, złe samopoczucie, bóle, objawy ze strony układu oddechowego)⁵⁵. Niektórzy pacjenci zgłaszają doświadczenie wypadku, urazu, unieruchomienia, operacji lub znacznego stresu fizycznego lub emocjonalnego przed wystąpieniem objawów ME/CFS⁵⁶⁵⁷.

W kontekście pandemii COVID-19, infekcja SARS-CoV-2 została zidentyfikowana jako potencjalny czynnik wyzwalający ME/CFS⁵⁸. Szacuje się, że po pandemii COVID-19 liczba osób z ME/CFS na świecie może znacząco wzrosnąć⁵⁹.

Nasilenie i wpływ ME/CFS na życie pacjentów

ME/CFS charakteryzuje się różnym stopniem nasilenia objawów i wpływu na życie pacjentów. Około 25% osób z ME/CFS ma łagodną postać choroby i jest w stanie uczęszczać do szkoły lub pracować w pełnym lub niepełnym wymiarze godzin, ograniczając jednocześnie inne aktywności⁶⁰. Około 50% ma umiarkowaną do ciężkiej postać ME/CFS i prawdopodobnie nie jest w stanie uczyć się ani pracować⁶¹. Kolejne 25% doświadcza ciężkiej postaci ME/CFS i musi pozostawać w domu lub w łóżku⁶²⁶³.

Według CDC, do 75% amerykańskich pacjentów z ME/CFS jest zbyt chorych, aby pracować, a wskaźniki na całym świecie wynoszą między 50 a 75% pacjentów niezdolnych do pracy⁶⁴. W badaniu szwajcarskim tylko jedna trzecia pacjentów pracowała (w pełnym lub niepełnym wymiarze godzin)⁶⁵.

ME/CFS ma znaczący wpływ ekonomiczny zarówno na poziomie indywidualnym, jak i społecznym. Roczne koszty ekonomiczne ME/CFS szacuje się na 17-24 miliardów dolarów w Stanach Zjednoczonych⁶⁶⁶⁷, w tym 9,1 miliarda dolarów przypisuje się utraconej produktywności gospodarstw domowych i siły roboczej⁶⁸. Średnia dotknięta rodzina rezygnuje z około 20 000 dolarów rocznych zarobków i wynagrodzeń⁶⁹.

Jakość życia związana ze zdrowiem u pacjentów z ME/CFS jest znacząco niższa niż średnia populacyjna. Według badania duńskiego, opartego na kwestionariuszu EQ-5D-3L, jakość życia pacjentów z ME/CFS była najniższa spośród wszystkich porównywanych chorób, zarówno w analizie nieskorygowanej, jak i w skorygowanej analizie regresji⁷⁰⁷¹.

Współwystępowanie chorób z ME/CFS

U pacjentów z ME/CFS często występują choroby współistniejące. W badaniu szwajcarskim 82,2% pacjentów cierpiało na choroby współistniejące⁷². W badaniu UK Biobank 83% kohorty ME/CFS prezentowało wielochorobowość, zgłaszając 272 różne choroby współistniejące⁷³.

Choroby współistniejące, które występowały znacząco częściej u pacjentów z ME/CFS w porównaniu z populacją kontrolną, to: depresja, astma, zespół jelita drażliwego, niedoczynność tarczycy, katar sienny i migrena⁷⁴. Osoby z historią innych złożonych problemów medycznych, takich jak fibromialgia czy zespół posturalnej tachykardii ortostatycznej (POTS), mogą być bardziej narażone na rozwój ME/CFS⁷⁵.

Badanie przeprowadzone przez Moslehi wykazało, że osoby z ME/CFS pięciokrotnie częściej miały rodzinną historię chorób autoimmunologicznych niż grupa kontrolna, co sugeruje potencjalne powiązania między ME/CFS a chorobami autoimmunologicznymi⁷⁶.

Rokowanie i przebieg choroby ME/CFS

Rokowanie w ME/CFS jest zmienne, a przebieg choroby charakteryzuje się okresami remisji i nawrotów⁷⁷. Badania longitudinalne o różnym czasie trwania wykazały, że chociaż 17-64% pacjentów z ME/CFS wykazuje poprawę, mniej niż 10% całkowicie wraca do zdrowia, a kolejne 10-20% pogarsza się podczas obserwacji⁷⁸.

Mediana czasu trwania choroby wynosi około siedem lat⁷⁹, ale w badaniu szwajcarskim pacjenci chorowali na ME/CFS średnio przez 13,7 lat, przy czym połowa (50,3%) stwierdzała, że ich stan stopniowo się pogarsza⁸⁰⁸¹.

Rokowanie dla ME/CFS uważa się za złe, z jedynie niewielką częścią pacjentów (mediana szacunków 5%) powracających do poziomu funkcjonowania sprzed choroby⁸². Znaczna poprawa odnotowywana jest u około 40% pacjentów, a rokowanie u nastolatków uważa się za lepsze niż u dorosłych⁸³⁸⁴.

Badanie przeprowadzone w Norwegii wykazało, że nie ma zwiększonego ryzyka śmiertelności z wszystkich przyczyn ani śmiertelności z powodu raka, ale istnieje zwiększone ryzyko samobójstwa u pacjentów z ME/CFS⁸⁵. Ryzyko samobójstwa było 6,85 razy wyższe niż w populacji ogólnej⁸⁶. Hiszpańskie badanie wykazało ryzyko samobójstwa na poziomie 12,75% w porównaniu do 2,3% w populacji ogólnej⁸⁷.

ME/CFS u dzieci i młodzieży

ME/CFS dotyka również dzieci i młodzież, choć częstość występowania w tej grupie jest niższa niż u dorosłych. Szacuje się, że częstość występowania ME/CFS u dzieci i młodzieży wynosi około 0,1-0,5%⁸⁸. Badanie metaanalityczne wykazało, że częstość występowania w populacji ogólnej (1,45%) i w populacjach specyficznych (1,62%) była wyższa niż u dzieci i młodzieży (0,89%)⁸⁹.

U nastolatków stosunek dziewcząt do chłopców z ME/CFS wynosi około 3-4:1⁹⁰. Dane na temat proporcji płci u młodszych dzieci są bardziej ograniczone. ME/CFS jest częstą przyczyną długotrwałej nieobecności w szkole z powodu choroby, a niezdiagnozowane ME/CFS jest również częstą przyczyną słabej frekwencji w szkole⁹¹.

Dzieci i nastolatki mają lepsze szanse na pełny lub częściowy powrót do zdrowia z ME/CFS niż dorośli⁹². Jednak długoterminowa obserwacja młodych ludzi z ME/CFS pokazuje, że zaangażowanie w edukację jest kluczową kwestią, która poprawia ich zdolność do funkcjonowania, niezależnie od tego, czy wracają do zdrowia⁹³.

Wyzwania w badaniach epidemiologicznych ME/CFS

Badania epidemiologiczne ME/CFS napotykają na szereg wyzwań, które wpływają na dokładność szacunków częstości występowania i zapadalności. Jednym z głównych problemów jest brak konsensusu co do definicji przypadku i kryteriów diagnostycznych⁹⁴⁹⁵. Istnieje wiele różnych kryteriów diagnostycznych dla ME/CFS, w tym CDC-1994 (kryteria Fukuda), Kanadyjskie Kryteria Konsensusu (CCC) oraz kryteria Instytutu Medycyny (IOM)⁹⁶.

Innym wyzwaniem jest brak obiektywnego testu diagnostycznego dla ME/CFS, co prowadzi do diagnozowania na podstawie objawów i wykluczenia innych chorób⁹⁷⁹⁸. To utrudnia identyfikację przypadków w badaniach epidemiologicznych i może prowadzić do niedoszacowania lub przeszacowania częstości występowania.

Wzorce skierowania i dostępu do opieki zdrowotnej również wpływają na szacunki epidemiologiczne. Badania oparte na pacjentach skierowanych przez lekarzy mogą nie uwzględniać członków społeczeństwa, którzy nie mają dostępu do opieki medycznej ze względu na swoje objawy⁹⁹.

W celu poprawy badań epidemiologicznych ME/CFS, sieć EUROMENE zaleca, aby przyszłe badania były lepiej prowadzone w społeczności, z przeglądem historii klinicznej potencjalnych przypadków, uzyskiwaniem dodatkowych obiektywnych informacji (w razie potrzeby) i stosowaniem odpowiednich definicji przypadków ME/CFS¹⁰⁰¹⁰¹.

Nadzór nad ME/CFS: wyzwania i perspektywy

W obliczu złożoności ME/CFS i jego znaczącego wpływu na zdrowie publiczne, istnieje pilna potrzeba rozwoju systemów nadzoru epidemiologicznego dla tej choroby.

Obecny stan nadzoru epidemiologicznego nad ME/CFS

Nadzór epidemiologiczny nad ME/CFS jest obecnie ograniczony w wielu krajach. Brak standaryzowanych systemów raportowania i monitorowania przypadków ME/CFS utrudnia dokładne śledzenie trendów epidemiologicznych i obciążenia chorobą¹⁰². W większości krajów ME/CFS nie podlega obowiązkowemu zgłaszaniu, co utrudnia zbieranie danych populacyjnych.

W Stanach Zjednoczonych Kalifornijski Program Chorób Zakaźnych (California Emerging Infections Program) prowadzi aktywny, syndromowy nadzór nad przedłużającym się, niewyjaśnionym zmęczeniem, aby lepiej zrozumieć rozwój i wczesne etapy (pierwsze 2-5 lat) ME/CFS¹⁰³. Jest to jeden z nielicznych przykładów systematycznego podejścia do nadzoru nad ME/CFS.

W Europie sieć EUROMENE (European Network on ME/CFS) dąży do poprawy nadzoru epidemiologicznego poprzez standaryzację metod zbierania danych i definicji przypadków¹⁰⁴. Jednak inicjatywy te są wciąż w początkowej fazie rozwoju.

Wyzwania w nadzorze nad ME/CFS

Jednym z głównych wyzwań w nadzorze nad ME/CFS jest brak biomarkerów i obiektywnych testów diagnostycznych¹⁰⁵¹⁰⁶. Diagnoza opiera się głównie na objawach klinicznych i wykluczeniu innych chorób, co utrudnia standaryzację przypadków w systemach nadzoru.

Innym wyzwaniem jest znaczące niedodiagnozowanie ME/CFS. Według różnych szacunków, 84-91% osób z ME/CFS nie ma postawionej diagnozy¹⁰⁷, co prowadzi do poważnego niedoszacowania rzeczywistego obciążenia chorobą w systemach nadzoru.

Brak świadomości i wiedzy na temat ME/CFS wśród pracowników służby zdrowia również wpływa na jakość nadzoru epidemiologicznego. Wielu lekarzy ma ograniczoną wiedzę na temat ME/CFS lub nie uznaje go za rzeczywistą jednostkę chorobową, co prowadzi do nieprawidłowego raportowania lub braku raportowania przypadków¹⁰⁸.

Kontrowersje dotyczące kryteriów diagnostycznych i definicji przypadków ME/CFS również utrudniają nadzór epidemiologiczny¹⁰⁹. Różne definicje przypadków mogą prowadzić do różnych szacunków częstości występowania i zapadalności, utrudniając porównania między badaniami i regionami.

Innowacyjne podejścia do nadzoru nad ME/CFS

W odpowiedzi na te wyzwania, badacze opracowują innowacyjne podejścia do nadzoru nad ME/CFS. Jednym z obiecujących kierunków jest wykorzystanie dużych zbiorów danych i metod analizy danych do identyfikacji przypadków ME/CFS w istniejących systemach zdrowotnych¹¹⁰.

Narzędzia takie jak mapMECFS i searchMECFS, opracowane przez RTI International, umożliwiają badaczom wyszukiwanie i dostęp do danych z szerokiego zakresu badań biologicznych i klinicznych dotyczących ME/CFS, co ułatwia dzielenie się danymi i odkrycia¹¹¹.

Innym podejściem jest wykorzystanie analizy metabolomicznej do identyfikacji potencjalnych biomarkerów dla ME/CFS, co mogłoby poprawić diagnostykę i nadzór nad chorobą¹¹²¹¹³. Badacze z UK Biobank opracowali obliczenie matematyczne, wykorzystujące 19 podstawowych czynników zdrowotnych i 9 markerów krwi, które mogło poprawnie klasyfikować osoby z ME/CFS i bez ME/CFS w 83% przypadków¹¹⁴.

Projekt MyFatigue ma na celu generowanie nowej wiedzy na temat czynników wpływających na postrzeganą ciężkość zmęczenia w ME/CFS i Long COVID, analizując podobieństwa i różnice między obiema populacjami badanymi¹¹⁵. Takie podejścia mogą pomóc w lepszym zrozumieniu epidemiologii ME/CFS i rozwoju bardziej skutecznych strategii nadzoru.

Potrzeby i zalecenia dotyczące nadzoru nad ME/CFS

Istnieje pilna potrzeba rozwoju i wdrożenia kompleksowych systemów nadzoru epidemiologicznego dla ME/CFS. Takie systemy powinny obejmować standaryzowane definicje przypadków, protokoły diagnostyczne i metody zbierania danych¹¹⁶.

Badacze i organizacje zdrowia publicznego zalecają przeprowadzenie dobrze zaprojektowanych i statystycznie wiarygodnych badań epidemiologicznych w celu lepszego określenia częstości występowania i zapadalności na ME/CFS¹¹⁷¹¹⁸.

W Szkocji zaleca się badanie częstości występowania i wpływu wszystkich kategorii choroby, szczególnie ciężkiej postaci¹¹⁹. Podobnie w Wielkiej Brytanii podkreśla się potrzebę nowego, kompleksowego badania epidemiologicznego¹²⁰.

Integracja danych z różnych źródeł, w tym z elektronicznych rejestrów medycznych, badań kohortowych i rejestrów chorób, mogłaby poprawić nadzór nad ME/CFS¹²¹. Ważne jest również uwzględnienie danych z różnych grup populacyjnych, aby zapewnić reprezentatywność systemów nadzoru.

Poprawa świadomości i edukacji na temat ME/CFS wśród pracowników służby zdrowia jest również kluczowa dla usprawnienia nadzoru epidemiologicznego¹²². Lepsze rozpoznawanie i raportowanie przypadków przez lekarzy mogłoby znacząco poprawić dokładność danych nadzoru.

Wpływ COVID-19 na epidemiologię ME/CFS

Pandemia COVID-19 miała znaczący wpływ na epidemiologię ME/CFS, potencjalnie prowadząc do wzrostu liczby przypadków i zwiększając świadomość tego schorzenia.

ME/CFS po infekcji SARS-CoV-2

Infekcja SARS-CoV-2 została zidentyfikowana jako potencjalny czynnik wyzwalający ME/CFS¹²³¹²⁴. ME/CFS często występuje po ostrej infekcji, a COVID-19 wydaje się być jedną z infekcji, które mogą prowadzić do rozwoju ME/CFS¹²⁵.

Badanie RECOVER-Adult wykazało, że 4,5% uczestników po COVID-19 spełniało kryteria diagnostyczne ME/CFS, w porównaniu do 0,6% uczestników, którzy nie byli zakażeni wirusem SARS-CoV-2¹²⁶¹²⁷. Wskaźnik zapadalności na ME/CFS u uczestników obserwowanych od momentu zakażenia SARS-CoV-2 był prawie pięciokrotnie wyższy niż u niezakażonych uczestników (współczynnik ryzyka 4,93, 95% CI 3,62-6,71)¹²⁸.

Podobne zjawisko obserwowano po wcześniejszych epidemiach koronawirusów. Po pandemii SARS w latach 2002/2003 część chorych rozwinęła ME/CFS¹²⁹. Wskazuje to na potencjalne podobieństwa w patofizjologii długotrwałych powikłań po różnych infekcjach koronawirusowych.

Podobieństwa między Long COVID a ME/CFS

Long COVID i ME/CFS wykazują znaczące podobieństwa w objawach klinicznych i potencjalnych mechanizmach patofizjologicznych¹³⁰. Podobnie jak w ME/CFS, w Long COVID kluczowymi cechami są złe samopoczucie powysiłkowe (PEM) i nietolerancja wysiłku¹³¹.

Część osób z Long COVID spełnia kryteria diagnostyczne ME/CFS, co sugeruje, że mogą to być nakładające się lub powiązane stany¹³². Badania wskazują, że osoby z Long COVID, których zdolność do wykonywania codziennych czynności została znacznie ograniczona (około 380 000 osób według danych ONS), mogą potencjalnie spełniać kryteria diagnostyczne ME/CFS¹³³.

Projekt MyFatigue ma na celu zbadanie czynników wpływających na postrzeganą ciężkość zmęczenia zarówno w ME/CFS, jak i Long COVID, analizując podobieństwa i różnice między obiema populacjami¹³⁴¹³⁵. Takie badania mogą pomóc lepiej zrozumieć nakładające się mechanizmy patofizjologiczne obu stanów.

Szacowany wzrost liczby przypadków ME/CFS po pandemii

Eksperci przewidują znaczący wzrost liczby przypadków ME/CFS na całym świecie w wyniku pandemii COVID-19¹³⁶¹³⁷. Według niektórych szacunków, w następstwie pandemii COVID-19 na całym świecie może zostać wywołanych ponad 10 milionów nowych przypadków ME/CFS¹³⁸.

W Niemczech przed pandemią COVID-19 liczbę osób z ME/CFS szacowano na około 250 000, w tym 40 000 dzieci i młodzieży. Eksperci zakładają, że liczba chorych podwoiła się w wyniku COVID-19, co potwierdza wzrost liczby przypadków leczenia ME/CFS do 620 000 w 2023 roku według danych Federalnego Stowarzyszenia Lekarzy Kas Chorych (Kassenärztliche Bundesvereinigung)¹³⁹.

W Stanach Zjednoczonych szacuje się, że liczba osób z ME/CFS wzrosła z około 1,7-3,8 miliona przed pandemią do około 5-9 milionów po pandemii COVID-19¹⁴⁰.

Implikacje dla zdrowia publicznego i systemów opieki zdrowotnej

Wzrost liczby przypadków ME/CFS w wyniku pandemii COVID-19 ma znaczące implikacje dla zdrowia publicznego i systemów opieki zdrowotnej¹⁴¹. Zwiększone obciążenie ME/CFS wymaga dodatkowych zasobów dla diagnostyki, leczenia i wsparcia pacjentów.

Systemy opieki zdrowotnej muszą być przygotowane na rosnącą liczbę pacjentów z ME/CFS, w tym na zapewnienie odpowiedniego szkolenia dla pracowników służby zdrowia w zakresie diagnostyki i postępowania z ME/CFS¹⁴².

Pandemia COVID-19 zwróciła również większą uwagę na ME/CFS, potencjalnie prowadząc do zwiększenia świadomości, badań i finansowania¹⁴³. W długiej perspektywie może to pomóc w poprawie opieki nad pacjentami z ME/CFS, niezależnie od czynnika wyzwalającego ich chorobę.

Kluczowe jest również rozwijanie badań nad powiązaniami między COVID-19 a ME/CFS, aby lepiej zrozumieć mechanizmy patofizjologiczne i potencjalne strategie profilaktyczne i terapeutyczne¹⁴⁴.

Znaczenie epidemiologii ME/CFS dla zdrowia publicznego

Epidemiologia ME/CFS ma kluczowe znaczenie dla zdrowia publicznego, wpływając na planowanie opieki zdrowotnej, alokację zasobów i kierunki badań.

Obciążenie ekonomiczne i społeczne związane z ME/CFS

ME/CFS stanowi znaczące obciążenie ekonomiczne zarówno dla pacjentów i ich rodzin, jak i dla całego społeczeństwa¹⁴⁵¹⁴⁶. Bezpośrednie i pośrednie koszty ekonomiczne ME/CFS szacuje się na 17-24 miliardów dolarów rocznie w Stanach Zjednoczonych¹⁴⁷, w tym 9,1 miliarda dolarów przypisuje się utraconej produktywności gospodarstw domowych i siły roboczej¹⁴⁸.

Pacjenci z ME/CFS wydają znacznie więcej na opiekę zdrowotną niż ogólna populacja pacjentów. Częściej również odwiedzają lekarzy i placówki opieki zdrowotnej¹⁴⁹. Wielu pacjentów zgłasza bariery w dostępie do opieki zdrowotnej, w tym charakter ich choroby i kwestie finansowe.

ME/CFS często prowadzi do utraty lub ograniczenia zdolności do pracy. Przegląd 15 badań przeprowadzonych między 1966 a 2004 rokiem wykazał, że wskaźniki bezrobocia wśród osób z ME/CFS wahały się od 35% do 69% w 13 z tych badań¹⁵⁰. ME/CFS przyczyniło się do utraty zarobków gospodarstw domowych o około 8 554 dolarów, z czego 19% można przypisać niższemu poziomowi wykształcenia.

Badanie przeprowadzone wśród pacjentów z ME/CFS w Kansas wykazało, że ME/CFS skutkowało zmniejszoną produktywnością gospodarstw domowych i siły roboczej, powodując indywidualne straty dochodów w wysokości około 20 000 dolarów rocznie¹⁵¹¹⁵².

Wyzwania diagnostyczne i bariery w dostępie do opieki

Diagnozowanie ME/CFS pozostaje wyzwaniem klinicznym, co wpływa na dostęp pacjentów do odpowiedniej opieki¹⁵³¹⁵⁴. Brak specyficznych testów diagnostycznych i markerów biologicznych oznacza, że diagnoza opiera się głównie na objawach klinicznych i wykluczeniu innych chorób¹⁵⁵.

Pacjenci często zmagają się z chorobą przez lata, zanim otrzymają diagnozę, a szacuje się, że 84-91% osób dotkniętych ME/CFS nie ma jeszcze postawionej diagnozy¹⁵⁶. Opóźnienie w diagnozie i leczeniu może prowadzić do gorszych wyników klinicznych i zwiększonego obciążenia chorobą¹⁵⁷.

Bariery w dostępie do opieki zdrowotnej dla pacjentów z ME/CFS obejmują brak świadomości i wiedzy na temat choroby wśród pracowników służby zdrowia¹⁵⁸, ograniczoną dostępność specjalistycznych ośrodków opieki oraz stygmatyzację i sceptycyzm wobec rzeczywistości choroby¹⁵⁹.

W wielu krajach brakuje odpowiednich usług klinicznych dla pacjentów z ME/CFS. Na przykład w Polsce, pomimo powszechności zmęczenia i jego wpływu na jakość życia, nie ma usług klinicznych dla zmęczenia lub ME/CFS, a choroba jest słabo rozumiana i rzadko diagnozowana¹⁶⁰.

Implikacje dla planowania opieki zdrowotnej i polityki zdrowotnej

Dokładne dane epidemiologiczne dotyczące ME/CFS są kluczowe dla planowania opieki zdrowotnej i kształtowania polityki zdrowotnej¹⁶¹. Zrozumienie częstości występowania, zapadalności i charakterystyki demograficznej pacjentów z ME/CFS pomaga w alokacji zasobów i rozwoju odpowiednich usług.

Pomimo niższej częstości występowania w porównaniu z niektórymi innymi badaniami, konsekwencje dla zdrowia i opieki społecznej są nadal znaczące, biorąc pod uwagę wyniszczający charakter ME/CFS i jego wysoki wpływ ekonomiczny na pacjentów, rodziny i całe społeczeństwo¹⁶².

W Wielkiej Brytanii Narodowy Instytut Doskonałości w Opiece Zdrowotnej i Społecznej (NICE) opracował wytyczne dotyczące diagnozy i postępowania w ME/CFS, które mają na celu poprawę świadomości i zrozumienia ME/CFS oraz momentu, w którym należy podejrzewać chorobę, aby pacjenci byli diagnozowani wcześniej¹⁶³.

W Australii Narodowa Rada ds. Badań Medycznych i Zdrowotnych (NHMRC) przeznaczyła 1,1 miliona dolarów na opracowanie wytycznych praktyki klinicznej dla ME/CFS, których celem jest poprawa diagnostyki, leczenia i opieki nad pacjentami z ME/CFS¹⁶⁴¹⁶⁵.

Kierunki przyszłych badań epidemiologicznych ME/CFS

Istnieje pilna potrzeba dobrze zaprojektowanych i statystycznie wiarygodnych badań epidemiologicznych dotyczących ME/CFS¹⁶⁶¹⁶⁷. Przyszłe badania powinny wykorzystywać standaryzowane definicje przypadków i metody, aby umożliwić porównania między różnymi regionami i populacjami.

Istotne jest również prowadzenie badań w różnych grupach populacyjnych, aby lepiej zrozumieć wpływ czynników demograficznych, społeczno-ekonomicznych i środowiskowych na ryzyko i przebieg ME/CFS¹⁶⁸.

Badania nad przebiegiem choroby i czynnikami prognostycznymi są również ważne dla zrozumienia długoterminowych wyników i opracowania skutecznych strategii interwencji¹⁶⁹.

Rozwój biomarkerów i testów diagnostycznych dla ME/CFS jest priorytetem badawczym, który mógłby znacząco poprawić dokładność badań epidemiologicznych i nadzoru nad chorobą¹⁷⁰¹⁷¹.

Badania nad powiązaniami między ME/CFS a innymi chorobami, takimi jak choroby autoimmunologiczne¹⁷² i Long COVID¹⁷³, mogą również dostarczyć cennych informacji na temat etiologii i patofizjologii ME/CFS.

Podsumowanie epidemiologii ME/CFS

Mialgiczne zapalenie mózgu i rdzenia/zespół przewlekłego zmęczenia (ME/CFS) jest złożoną, wyniszczającą chorobą przewlekłą, która dotyka miliony ludzi na całym świecie. Szacuje się, że częstość występowania ME/CFS wynosi od 0,1% do 2,8% populacji globalnej, z najczęściej cytowanym zakresem 0,2-0,5%¹⁷⁴¹⁷⁵.

ME/CFS występuje częściej u kobiet niż u mężczyzn, ze stosunkiem płci wynoszącym około 3-4:1¹⁷⁶. Choroba może wystąpić w każdym wieku, ale najczęściej dotyka dorosłych w wieku 30-50 lat, a w Stanach Zjednoczonych w wieku 40-60 lat¹⁷⁷.

ME/CFS często rozwija się po ostrej infekcji, z 72-80% pacjentów raportujących infekcję jako czynnik wyzwalający chorobę¹⁷⁸. Infekcja SARS-CoV-2 również została zidentyfikowana jako potencjalny czynnik wyzwalający ME/CFS, co może prowadzić do znaczącego wzrostu liczby przypadków na całym świecie w następstwie pandemii COVID-19¹⁷⁹.

ME/CFS ma znaczący wpływ na życie pacjentów i ich rodzin, z około 25% pacjentów doświadczających ciężkiej postaci choroby, która zmusza ich do pozostawania w domu lub w łóżku¹⁸⁰. Choroba wiąże się również ze znacznym obciążeniem ekonomicznym, szacowanym na 17-24 miliardów dolarów rocznie w Stanach Zjednoczonych¹⁸¹.

Pomimo znaczącego obciążenia chorobowego, ME/CFS pozostaje niedodiagnozowane, z szacunkami sugerującymi, że 84-91% osób dotkniętych ME/CFS nie ma postawionej diagnozy¹⁸². To podkreśla potrzebę lepszej świadomości, edukacji i rozpoznawania choroby wśród pracowników służby zdrowia.

Przyszłe badania epidemiologiczne powinny skupić się na lepszym zrozumieniu czynników ryzyka, przebiegu choroby i długoterminowych wyników ME/CFS, a także na rozwoju biomarkerów i testów diagnostycznych, które mogłyby poprawić dokładność badań epidemiologicznych i nadzoru nad chorobą¹⁸³¹⁸⁴.

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Materiały źródłowe

#1 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Comprehensive Review
https://pmc.ncbi.nlm.nih.gov/articles/PMC6787585/
The prevalence of ME/CFS varies among different studies depending on how this pathological condition is defined, the population surveyed, and the employed methodology. […] ME/CFS is an endemic disorder that affects all racial/ethnic groups and is seen across all socioeconomic strata. […] The median duration of the illness is approximately seven years, a quarter of those with the disease are unemployed or disabled, and the average affected family forgoes approximately $20,000 in annual earnings and wages. […] The prognosis of patients with ME/CFS is variable. […] Death in patients with ME/CFS is usually caused by another co-existing illness, in which cancer and cardiovascular abnormalities are the most common causes of death among this population. […] The primary symptom is the post-exertional fatigue accompanied by various neurological, cardiovascular, respiratory, and gastrointestinal manifestations.
#2 Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) | Journal of Translational Medicine | Full Text
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02269-0
Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) has been emerging as a significant health issue worldwide. This study aimed to systemically assess the prevalence of CFS/ME in various aspects of analyses for precise assessment. […] A total of 1291 articles were initially identified, and 45 articles (46 studies, 56 prevalence data) were selected for this study. […] The total average prevalence was 1.40-1.57%, pooled prevalence 0.39%, and meta-analysis 0.68% [95% CI 0.48-0.97]. […] This study comprehensively estimated the prevalence of CFS/ME; 0.89% according to the most commonly used case definition CDC-1994, with women approximately 1.5 to 2 folds higher than men in all categories. […] In worldwide statistics, approximately 1% of the population, 17 to 24 million people, suffer from this condition, which is likely to be as common as rheumatoid arthritis.
#3 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) | Symptoms, Causes, & Treatment | Britannica
https://www.britannica.com/science/myalgic-encephalomyelitis-chronic-fatigue-syndrome
myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), condition characterized by persistent debilitating fatigue that has no identifiable cause. ME/CFS is a remarkably complex illness and remains incompletely understood. […] Worldwide, an estimated 0.2 to 2.8 percent of people are affected by ME/CFS. However, prevalence rates likely are much higher because an estimated 90 percent of persons living with ME/CFS may be undiagnosed. […] Moreover, although anyone can be affected by ME/CFS, it is most common in adults between ages 40 and 60 and tends to affect women more often than men; this age range and gender difference presents significant challenges, particularly in differentiating ME/CFS from symptoms of early menopause. […] Diagnosis of ME/CFS is based primarily on two criteria: severe fatigue lasting six months or longer and the coexistence of any four other characteristic symptoms, which are mild fever, sore throat, tender lymph nodes, muscle pain and weakness, joint pain, headache, sleep disorders, confusion, and memory loss. […] There is no cure for ME/CFS. Patients can be treated with drugs to control their most severe symptoms; for example, some patients are treated with antihistamines to control allergy-like symptoms or with sedatives to treat sleep disorders.
#4 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Comprehensive Review
https://pmc.ncbi.nlm.nih.gov/articles/PMC6787585/
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating chronic disease of unknown aetiology that is recognized by the World Health Organization (WHO) and the United States Center for Disease Control and Prevention (US CDC) as a disorder of the brain. […] The estimated prevalence is estimated at 0.10.5%. […] In a recent review of the ME/CFS literature reported by The Institute of Medicine (IOM) of the United States (US), it was estimated that between 836,000 and 2.5 million Americans suffer from ME/CFS, causing an annual financial cost that ranges between 1724 billion (USD) dollars per year. […] ME/CFS constitutes a particular enigmatic, debilitating and costly significant public health problem. […] The disease affects all ages, races and socioeconomic groups and some studies showed that approximately three to four times as many women as men present the symptoms.
#5 Myalgic Encephalomyelitis: Causes, Symptoms, and Treatment
https://patient.info/doctor/myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs-pro
Myalgic encephalomyelitis (ME), or chronic fatigue syndrome (CFS), is a complex, chronic medical condition affecting multiple body systems and of unknown cause. It affects everyone differently. […] ME/CFS is not uncommon but the true prevalence is unknown and depends on the criteria used for diagnosis. […] The estimated prevalence is 0.1-0.5%. ME/CFS predominantly affects adults, with a peak age of onset of between 20 and 45 years with a female:male ratio of 3:1. […] Research has shown a higher incidence in socially deprived families. […] Diagnosing ME/CFS remains a challenge. Patients often struggle with their illness for years before an identification is made. […] There is currently no diagnostic test for ME/CFS and it is recognised on clinical grounds alone. […] ME/CFS is a relatively common cause of long-term sickness absence from school. Up to 2% of children have ME/CFS.
#6 Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) | Journal of Translational Medicine | Full Text
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02269-0
Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) has been emerging as a significant health issue worldwide. This study aimed to systemically assess the prevalence of CFS/ME in various aspects of analyses for precise assessment. […] A total of 1291 articles were initially identified, and 45 articles (46 studies, 56 prevalence data) were selected for this study. […] The total average prevalence was 1.40-1.57%, pooled prevalence 0.39%, and meta-analysis 0.68% [95% CI 0.48-0.97]. […] This study comprehensively estimated the prevalence of CFS/ME; 0.89% according to the most commonly used case definition CDC-1994, with women approximately 1.5 to 2 folds higher than men in all categories. […] In worldwide statistics, approximately 1% of the population, 17 to 24 million people, suffer from this condition, which is likely to be as common as rheumatoid arthritis.
#7 Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) | Journal of Translational Medicine | Full Text
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02269-0
Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) has been emerging as a significant health issue worldwide. This study aimed to systemically assess the prevalence of CFS/ME in various aspects of analyses for precise assessment. […] A total of 1291 articles were initially identified, and 45 articles (46 studies, 56 prevalence data) were selected for this study. […] The total average prevalence was 1.40-1.57%, pooled prevalence 0.39%, and meta-analysis 0.68% [95% CI 0.48-0.97]. […] This study comprehensively estimated the prevalence of CFS/ME; 0.89% according to the most commonly used case definition CDC-1994, with women approximately 1.5 to 2 folds higher than men in all categories. […] In worldwide statistics, approximately 1% of the population, 17 to 24 million people, suffer from this condition, which is likely to be as common as rheumatoid arthritis.
#8 Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) | Journal of Translational Medicine | Full Text
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02269-0
Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) has been emerging as a significant health issue worldwide. This study aimed to systemically assess the prevalence of CFS/ME in various aspects of analyses for precise assessment. […] A total of 1291 articles were initially identified, and 45 articles (46 studies, 56 prevalence data) were selected for this study. […] The total average prevalence was 1.40-1.57%, pooled prevalence 0.39%, and meta-analysis 0.68% [95% CI 0.48-0.97]. […] This study comprehensively estimated the prevalence of CFS/ME; 0.89% according to the most commonly used case definition CDC-1994, with women approximately 1.5 to 2 folds higher than men in all categories. […] In worldwide statistics, approximately 1% of the population, 17 to 24 million people, suffer from this condition, which is likely to be as common as rheumatoid arthritis.
#9 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
Statistics on the prevalence of myalgic encephalomyelitis and chronic fatigue syndrome vary. The CDC estimates that one million people in the US have ME/CFS and as many as 17-24 million people worldwide have ME/CFS. […] A recent UK biobank study places that estimate at 30 million. […] In 2015, the Institute of Medicine Report estimated there were between 836,000 and 2.5 million ME/CFS patients in the United States. […] 90% of patients are not diagnosed. […] Twenty-five percent of ME/CFS patients have a very severe form of it. […] This 25% of patients are severely ill and are either bed-bound, wheelchair bound, or are housebound or nearly so. […] ME/CFS is more prevalent in women than men, can affect children or adults but is most common in adults between the ages of 30 to 50 years old, or ages 40-60 in the United States.
#10 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
Statistics on the prevalence of myalgic encephalomyelitis and chronic fatigue syndrome vary. The CDC estimates that one million people in the US have ME/CFS and as many as 17-24 million people worldwide have ME/CFS. […] A recent UK biobank study places that estimate at 30 million. […] In 2015, the Institute of Medicine Report estimated there were between 836,000 and 2.5 million ME/CFS patients in the United States. […] 90% of patients are not diagnosed. […] Twenty-five percent of ME/CFS patients have a very severe form of it. […] This 25% of patients are severely ill and are either bed-bound, wheelchair bound, or are housebound or nearly so. […] ME/CFS is more prevalent in women than men, can affect children or adults but is most common in adults between the ages of 30 to 50 years old, or ages 40-60 in the United States.
#11 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Comprehensive Review
https://pmc.ncbi.nlm.nih.gov/articles/PMC6787585/
The prevalence of ME/CFS varies among different studies depending on how this pathological condition is defined, the population surveyed, and the employed methodology. […] ME/CFS is an endemic disorder that affects all racial/ethnic groups and is seen across all socioeconomic strata. […] The median duration of the illness is approximately seven years, a quarter of those with the disease are unemployed or disabled, and the average affected family forgoes approximately $20,000 in annual earnings and wages. […] The prognosis of patients with ME/CFS is variable. […] Death in patients with ME/CFS is usually caused by another co-existing illness, in which cancer and cardiovascular abnormalities are the most common causes of death among this population. […] The primary symptom is the post-exertional fatigue accompanied by various neurological, cardiovascular, respiratory, and gastrointestinal manifestations.
#12 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Comprehensive Review
https://pmc.ncbi.nlm.nih.gov/articles/PMC6787585/
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating chronic disease of unknown aetiology that is recognized by the World Health Organization (WHO) and the United States Center for Disease Control and Prevention (US CDC) as a disorder of the brain. […] The estimated prevalence is estimated at 0.10.5%. […] In a recent review of the ME/CFS literature reported by The Institute of Medicine (IOM) of the United States (US), it was estimated that between 836,000 and 2.5 million Americans suffer from ME/CFS, causing an annual financial cost that ranges between 1724 billion (USD) dollars per year. […] ME/CFS constitutes a particular enigmatic, debilitating and costly significant public health problem. […] The disease affects all ages, races and socioeconomic groups and some studies showed that approximately three to four times as many women as men present the symptoms.
#13 Summary | Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | The National Academies Press
https://nap.nationalacademies.org/read/19012/chapter/2
Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that impose a burden of illness on millions of people in the United States and around the world. Somewhere between 836,000 and 2.5 million Americans are estimated to have these disorders (Jason et al., 1999, 2006b). The cause of ME/CFS remains unknown, although in many cases, symptoms may have been triggered by an infection or other prodromal event, such as immunization, anesthetics, physical trauma, exposure to environmental pollutants, chemicals and heavy metals, and rarely blood transfusions (Carruthers and van de Sande, 2005, p. 1). […] Diagnosing ME/CFS in the clinical setting remains a challenge. Patients often struggle with their illness for years before receiving a diagnosis, and an estimated 84 to 91 percent of patients affected by ME/CFS are not yet diagnosed (Jason et al., 2006b; Solomon and Reeves, 2004).
#14 Myalgic encephalomyelitis/chronic fatigue syndrome – Wikipedia
https://en.wikipedia.org/wiki/Myalgic_encephalomyelitis/chronic_fatigue_syndrome
People with ME/CFS often face stigma in healthcare settings, and care is complicated by controversies around the cause and treatments of the illness. […] Historically, research funding for ME/CFS has been far below that of diseases with comparable impact. […] Reported prevalence rates vary widely depending on how ME/CFS is defined and diagnosed. […] Overall, around one in 150 people have ME/CFS. […] In England and Wales, over 250,000 people are estimated to be affected. […] It is likely that numbers have increased as a large share of people with long COVID meet the diagnostic criteria of ME/CFS. […] A 2021-2022 CDC survey found that 1.3% of adults in the United States, or 3.3 million, had ME/CFS. […] Women are diagnosed with ME/CFS about 1.5 to four times more often than men. […] The incidence rate (the onset of ME/CFS) has two peaks, one at 10-19 and another at 30-39 years, and the prevalence is highest in middle age.
#15 Prevalence of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Prevalence_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
The prevalence of myalgic encephalomyelitis and chronic fatigue syndrome is estimated at 17-24 million worldwide. […] According to the National Center for Health Statistics (NCHS) during 20212022, 1.3% of adults in the United States had ME/CFS. This corresponds to about 3.35 million adults or 4.3 million people when extrapolating the number to include minors. […] In 2015, the Institute of Medicine (IOM) Report from the United States National Academy of Sciences estimated there were between 836,000 and 2.5 million patients in the U.S. […] A 2018 study based on insurance claims gave „a rough estimate for the number of patients who may be diagnosed with ME or CFS in the U.S.” as between 1.7 million and 3.38 million. […] The IOM Report estimated that between 84% and 91% of patients are not diagnosed. […] The report further stated „Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome.”
#16 Clinical Overview of ME/CFS | ME/CFS | CDC
https://www.cdc.gov/me-cfs/hcp/clinical-overview/index.html
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, life-altering disease affecting many organ systems. It goes well beyond „being tired” and profoundly impacts patients’ quality of life and abilities. Patients frequently experience a substantial impairment in physical and mental function at some point in their illness. It’s estimated that as many as 3.3 million people in the United States have ME/CFS. The vast majority are undiagnosed. […] Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, chronic, debilitating disease. The disease is identified by three required symptoms and at least one of two additional symptoms. […] Many patients have multiple symptoms, in different systems. Long COVID brings greater attention to ME/CFS, as both illnesses share many of the same symptoms.
#17 Prevalence of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Prevalence_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
The prevalence of myalgic encephalomyelitis and chronic fatigue syndrome is estimated at 17-24 million worldwide. […] According to the National Center for Health Statistics (NCHS) during 20212022, 1.3% of adults in the United States had ME/CFS. This corresponds to about 3.35 million adults or 4.3 million people when extrapolating the number to include minors. […] In 2015, the Institute of Medicine (IOM) Report from the United States National Academy of Sciences estimated there were between 836,000 and 2.5 million patients in the U.S. […] A 2018 study based on insurance claims gave „a rough estimate for the number of patients who may be diagnosed with ME or CFS in the U.S.” as between 1.7 million and 3.38 million. […] The IOM Report estimated that between 84% and 91% of patients are not diagnosed. […] The report further stated „Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome.”
#18 Prevalence: How many people have ME/CFS in the UK? – The ME Association
https://meassociation.org.uk/2024/05/how-many-people-have-me-cfs-in-the-uk/
The honest answer is that we just dont know how many people have ME/CFS in the UK. […] Like most other charities and organisations that deal with ME/CFS we have been using a figure of at least 250,000 for many years, which dates back to the publication of a 2002 Report to the Chief Medical Officer by an Independent Working Group of which I was a member. […] The report estimated (section 1.4.2 Epidemiology) 0.2 0.4% of the population (i.e., that 2 4 people in every 1,000) could have ME/CFS. […] The 2002 CMO Working Group highlighted the fact that a reliable measure of prevalence for ME/CFS was missing, and we noted that the organisation of primary care (GP) services in the UK created a unique opportunity to conduct epidemiology studies on a national scale. […] The UK study upon which the 250,000 figure is also partly based was carried out by Dr Luis Nacul et al. in 2011. It concluded that the minimum prevalence of ME/CFS was 0.2% and it used data from GP practices covering 140,000 patients:
#19 Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care | BMC Medicine | Full Text
https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-9-91
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or chronic fatigue syndrome (CFS) has been used to name a range of chronic conditions characterized by extreme fatigue and other disabling symptoms. […] We estimated the prevalence and incidence of ME/CFS in three regions in England, and discussed the implications of frequency statistics and the use of different case definitions for health and social care planning and for research. […] The estimated minimum prevalence rate of ME/CFS was 0.2% for cases meeting any of the study case definitions, 0.19% for the CDC-1994 definition, 0.11% for the Canadian definition and 0.03% for the ECD. […] The overall estimated minimal yearly incidence was 0.015%. […] ME/CFS is not uncommon in England and represents a significant burden to patients and society.
#20 Prevalence: How many people have ME/CFS in the UK? – The ME Association
https://meassociation.org.uk/2024/05/how-many-people-have-me-cfs-in-the-uk/
The honest answer is that we just dont know how many people have ME/CFS in the UK. […] Like most other charities and organisations that deal with ME/CFS we have been using a figure of at least 250,000 for many years, which dates back to the publication of a 2002 Report to the Chief Medical Officer by an Independent Working Group of which I was a member. […] The report estimated (section 1.4.2 Epidemiology) 0.2 0.4% of the population (i.e., that 2 4 people in every 1,000) could have ME/CFS. […] The 2002 CMO Working Group highlighted the fact that a reliable measure of prevalence for ME/CFS was missing, and we noted that the organisation of primary care (GP) services in the UK created a unique opportunity to conduct epidemiology studies on a national scale. […] The UK study upon which the 250,000 figure is also partly based was carried out by Dr Luis Nacul et al. in 2011. It concluded that the minimum prevalence of ME/CFS was 0.2% and it used data from GP practices covering 140,000 patients:
#21 Prevalence: How many people have ME/CFS in the UK? – The ME Association
https://meassociation.org.uk/2024/05/how-many-people-have-me-cfs-in-the-uk/
The estimated minimum prevalence rate of ME/CFS was 0.2% for cases meeting any of the study case definitions, 0.19% for the CDC-1994 definition, 0.11% for the Canadian definition and 0.03% for the ECD. […] The only new research since then has come from Professor Chris Ponting and Gemma Samms at the University of Edinburgh. This concluded that the prevalence of people with ME/CFS in the UK may be around 390,000 (0.6%), but it also comes with caveats. […] The lifetime prevalence of ME/CFS for English females and males may be as high as 0.92% and 0.25%, respectively, or approximately 390,000 UK individuals overall. […] There has clearly been a rise in the number of people developing post-Covid or Long Covid ME/CFS during the past 4 years, i.e., people whose symptoms match the criteria for ME/CFS.
#22 Systematic Review of the Epidemiological Burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology – American ME and CFS Society
https://ammes.org/2020/06/02/systematic-review-of-the-epidemiological-burden-of-myalgic-encephalomyelitis-chronic-fatigue-syndrome-across-europe-current-evidence-and-euromene-research-recommendations-for-epidemiology/
This review aimed at determining the prevalence and incidence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in Europe. […] Prevalence ranged from 0.1% to 2.2%. […] In conclusion, studies on the prevalence and incidence of ME/CFS in Europe were scarce. Our findings point to the pressing need for well-designed and statistically powered epidemiological studies. […] EUROMENE recommends that future research is better conducted in the community, reviewing the clinical history of potential cases, obtaining additional objective information (when needed) and using adequate ME/CFS case definitions; namely, the Centers for Disease Control Prevention1994, Canadian Consensus Criteria, or Institute of Medicine criteria.
#23 Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) | Journal of Translational Medicine | Full Text
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02269-0
The prevalence in the general population (1.45%) and in specific populations (1.62%) were higher than that in children and adolescents (0.89%). […] The total prevalence reported for Western and Asian populations were comparable (1.32-1.45% vs. 1.51-1.74%). […] Taken together, our findings illustrated the prevalence of CFS/ME, providing comprehensive information that can serve as an essential reference for further studies of CFS/ME. The overall estimated prevalence was 0.89% when based on the CDC-1994 definition and 1.14% when diagnosed via interview, and there was an approximately 1.5-fold predominance of women; however, the prevalence rates varied according to the case definitions and diagnostic methods used by as much as tenfold.
#24 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A preliminary survey among patients in Switzerland
https://pmc.ncbi.nlm.nih.gov/articles/PMC10149204/
Despite the severe symptom burden, long duration and associated disabilities caused by the disease, Switzerland remains one of the few European countries for which, to our knowledge, highly limited systematic scientific data on ME/CFS patients exists and its disease prevalence remains unknown. The objective of this study was to collate for the first time evidence on issues relevant to ME/CFS in a selected population of ME/CFS sufferers (e.g. demographic indicators; disease information), who were both Swiss resident and members of the Swiss ME/CFS association, in order to promote awareness and recognition of ME-CFS in Switzerland. […] The exact etiologies for ME/CFS remain unknown and debated, but are clearly multifactorial. One major reason for this is that the associations remain descriptive, and functional pathophysiological links are lacking this is reflected by the diagnosis which per exclusionem and the absence of defined biomarkers, which would provide this disease with more evidence and lead to more acceptance by medical staff.
#25 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Comprehensive Review
https://pmc.ncbi.nlm.nih.gov/articles/PMC6787585/
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating chronic disease of unknown aetiology that is recognized by the World Health Organization (WHO) and the United States Center for Disease Control and Prevention (US CDC) as a disorder of the brain. […] The estimated prevalence is estimated at 0.10.5%. […] In a recent review of the ME/CFS literature reported by The Institute of Medicine (IOM) of the United States (US), it was estimated that between 836,000 and 2.5 million Americans suffer from ME/CFS, causing an annual financial cost that ranges between 1724 billion (USD) dollars per year. […] ME/CFS constitutes a particular enigmatic, debilitating and costly significant public health problem. […] The disease affects all ages, races and socioeconomic groups and some studies showed that approximately three to four times as many women as men present the symptoms.
#26 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
Statistics on the prevalence of myalgic encephalomyelitis and chronic fatigue syndrome vary. The CDC estimates that one million people in the US have ME/CFS and as many as 17-24 million people worldwide have ME/CFS. […] A recent UK biobank study places that estimate at 30 million. […] In 2015, the Institute of Medicine Report estimated there were between 836,000 and 2.5 million ME/CFS patients in the United States. […] 90% of patients are not diagnosed. […] Twenty-five percent of ME/CFS patients have a very severe form of it. […] This 25% of patients are severely ill and are either bed-bound, wheelchair bound, or are housebound or nearly so. […] ME/CFS is more prevalent in women than men, can affect children or adults but is most common in adults between the ages of 30 to 50 years old, or ages 40-60 in the United States.
#27 Myalgic Encephalomyelitis: Causes, Symptoms, and Treatment
https://patient.info/doctor/myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs-pro
Myalgic encephalomyelitis (ME), or chronic fatigue syndrome (CFS), is a complex, chronic medical condition affecting multiple body systems and of unknown cause. It affects everyone differently. […] ME/CFS is not uncommon but the true prevalence is unknown and depends on the criteria used for diagnosis. […] The estimated prevalence is 0.1-0.5%. ME/CFS predominantly affects adults, with a peak age of onset of between 20 and 45 years with a female:male ratio of 3:1. […] Research has shown a higher incidence in socially deprived families. […] Diagnosing ME/CFS remains a challenge. Patients often struggle with their illness for years before an identification is made. […] There is currently no diagnostic test for ME/CFS and it is recognised on clinical grounds alone. […] ME/CFS is a relatively common cause of long-term sickness absence from school. Up to 2% of children have ME/CFS.
#28 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A preliminary survey among patients in Switzerland
https://pmc.ncbi.nlm.nih.gov/articles/PMC10149204/
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multi-factorial systemic chronic debilitating disease of poorly understood etiology and limited systematic evidence. The questionnaire and interview-based survey included 169 ME/CFS patients from the Swiss ME/CFS association. The majority of patients were females (72.2%), single (55.7%) and without children (62.5%). Only one third were working (full/part-time). The mean onset of ME/CFS was 31.6 years of age with 15% of patients being symptomatic before their 18th birthday. In this cohort, patients had documented ME/CFS for a mean 13.7 years, whereby half (50.3%) stated their condition was progressively worsening. Triggering events and times of disease onset were recalled by 90% of the participants. An infectious disease was associated with a singular or part of multiple events by 72.9% and 80.6%, respectively. Prior to disease onset, a third of the patients reported respiratory infections; followed by gastro-intestinal infections (15.4%) and tick-borne diseases (16.2%). Viral infections were recalled by 77.8% of the respondents, with Epstein Barr Virus being the most commonly reported agent. Patients self-reported an average number of 13 different symptoms, all described specific triggers of symptoms exacerbation and 82.2% suffered from co-morbidities. This study collated clinically relevant information on ME/CFS patients in Switzerland, highlighting the extent of disease severity, the associated factors negatively affecting daily life activities and work status as well as potential socio-economic impact.
#29 Discriminating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and comorbid conditions using metabolomics in UK Biobank | Communications Medicine
https://www.nature.com/articles/s43856-024-00669-7
The ME/CFS cohort comprised 74% females, consistent with a 3:1 female-to-male ratio previously reported. […] The preponderance of females was also observed in depression, IBS, hypothyroidism, and migraine cohorts. […] The ME/CFS cohort had a significantly higher proportion of participants reporting tiredness/lethargy (89%) and overall pain (81%). […] We found that 83% of the ME/CFS cohort presented with multiple illnesses, reporting 272 different comorbid conditions. […] Comorbid conditions reported at a frequency 5% in ME/CFS were compared to the C1 cohort, defined as a non-ME/CFS population inclusive of patients with disease (but excluding ME/CFS) and healthy participants, to identify comorbid conditions that were more prevalent in ME/CFS. […] Depression, asthma, IBS, hypothyroidism, hay fever and migraine were significantly increased in ME/CFS.
#30 Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) | Journal of Translational Medicine | Full Text
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02269-0
However, due to the lack of an objective diagnostic tool, an accurate estimation of prevalence has been challenging. […] Accurate prevalence rate and defining factor-related prevalence characteristics are essential for exploring the pathophysiological basis of any disease. […] The average prevalence of CFS/ME based on the 56 prevalence data reported was 1.40-1.57% (95% CI: 0.98-1.82), and the pooled prevalence was 0.39% (5370 CFS/ME patients of 1387,787 participants). […] The meta-analysis yielded an estimate of 0.68% (95% CI: 0.48-0.97) with high heterogeneity I2=99.4%. […] Regarding gender-related differences, 24 data (from 21 studies that included information about gender) indicated an approximately 2.0-fold preponderance of females of 2.24-2.59% vs. 1.11-1.05% for the total population and 2.83 vs. 1.39% for the general population.
#31 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
In 72% of causes reported by ME/CFS patients, the onset follows an acute infection, for example a virus or bacterial infection. […] The prevalence rate is projected at 0.2%-0.4% although estimates vary widely due to different definitions and sampling methods used. […] Estimated incidence rates generally, the number of new cases in a single year vary from 0.025% to 0.3% of the population. […] Numerous studies have found the rates of ME/CFS to be substantially higher in adult women than in men, with estimates ranging from 75-85%. […] A higher preponderance of women has also been noted in numerous outbreaks including Los Angeles, Akureyri, Rockville, MD, Royal Free Hospital, and Punta Gorda, Florida. […] In some cases, this was thought to do with the occupational hazard of nursing, but this female-skewed sex ratio was also found in several outbreaks among the general population.
#32 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – Symptoms and causes – Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complicated disorder. […] The cause of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is still unknown. […] A combination of factors may be involved, including: […] ME/CFS appears to run in some families, so some people may be born with a higher likelihood of developing the disorder. […] Some people develop ME/CFS symptoms after getting better from a viral or bacterial infection. […] Some people report that they experienced an injury, surgery or significant emotional stress shortly before their symptoms began. […] Some people with ME/CFS have problems converting the body’s fuel, primarily fats and sugars, into energy. […] ME/CFS can occur at any age, but it most commonly affects young to middle-aged adults.
#33 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A preliminary survey among patients in Switzerland
https://pmc.ncbi.nlm.nih.gov/articles/PMC10149204/
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multi-factorial systemic chronic debilitating disease of poorly understood etiology and limited systematic evidence. The questionnaire and interview-based survey included 169 ME/CFS patients from the Swiss ME/CFS association. The majority of patients were females (72.2%), single (55.7%) and without children (62.5%). Only one third were working (full/part-time). The mean onset of ME/CFS was 31.6 years of age with 15% of patients being symptomatic before their 18th birthday. In this cohort, patients had documented ME/CFS for a mean 13.7 years, whereby half (50.3%) stated their condition was progressively worsening. Triggering events and times of disease onset were recalled by 90% of the participants. An infectious disease was associated with a singular or part of multiple events by 72.9% and 80.6%, respectively. Prior to disease onset, a third of the patients reported respiratory infections; followed by gastro-intestinal infections (15.4%) and tick-borne diseases (16.2%). Viral infections were recalled by 77.8% of the respondents, with Epstein Barr Virus being the most commonly reported agent. Patients self-reported an average number of 13 different symptoms, all described specific triggers of symptoms exacerbation and 82.2% suffered from co-morbidities. This study collated clinically relevant information on ME/CFS patients in Switzerland, highlighting the extent of disease severity, the associated factors negatively affecting daily life activities and work status as well as potential socio-economic impact.
#34 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
New cases of ME/CFS have been in children as young as eight and adults in their eighties. […] In terms of incidence, a study in Norway found two age peaks, one between 10 and 19 years and a second peak between 30 and 39 years. […] In terms of prevalence, Jason found that individuals in the 40- to 49-year-old age range exhibited the highest prevalence rates of chronic fatigue syndrome (CFS). […] In 1999, a community-based study by Dr Leonard Jason, et al, performed in the Chicago area found that individuals who identified as people of color exhibited higher rates of CFS than whites, with Latino participants demonstrating the highest CFS prevalence. […] The prevalence of CFS was highest among skilled workers and lowest among professionals. […] People with ME/CFS are more disabled and socially marginalized than for most other chronic illnesses.
#35 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
New cases of ME/CFS have been in children as young as eight and adults in their eighties. […] In terms of incidence, a study in Norway found two age peaks, one between 10 and 19 years and a second peak between 30 and 39 years. […] In terms of prevalence, Jason found that individuals in the 40- to 49-year-old age range exhibited the highest prevalence rates of chronic fatigue syndrome (CFS). […] In 1999, a community-based study by Dr Leonard Jason, et al, performed in the Chicago area found that individuals who identified as people of color exhibited higher rates of CFS than whites, with Latino participants demonstrating the highest CFS prevalence. […] The prevalence of CFS was highest among skilled workers and lowest among professionals. […] People with ME/CFS are more disabled and socially marginalized than for most other chronic illnesses.
#36 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
In 72% of causes reported by ME/CFS patients, the onset follows an acute infection, for example a virus or bacterial infection. […] The prevalence rate is projected at 0.2%-0.4% although estimates vary widely due to different definitions and sampling methods used. […] Estimated incidence rates generally, the number of new cases in a single year vary from 0.025% to 0.3% of the population. […] Numerous studies have found the rates of ME/CFS to be substantially higher in adult women than in men, with estimates ranging from 75-85%. […] A higher preponderance of women has also been noted in numerous outbreaks including Los Angeles, Akureyri, Rockville, MD, Royal Free Hospital, and Punta Gorda, Florida. […] In some cases, this was thought to do with the occupational hazard of nursing, but this female-skewed sex ratio was also found in several outbreaks among the general population.
#37 Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care | BMC Medicine | Full Text
https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-9-91
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or chronic fatigue syndrome (CFS) has been used to name a range of chronic conditions characterized by extreme fatigue and other disabling symptoms. […] We estimated the prevalence and incidence of ME/CFS in three regions in England, and discussed the implications of frequency statistics and the use of different case definitions for health and social care planning and for research. […] The estimated minimum prevalence rate of ME/CFS was 0.2% for cases meeting any of the study case definitions, 0.19% for the CDC-1994 definition, 0.11% for the Canadian definition and 0.03% for the ECD. […] The overall estimated minimal yearly incidence was 0.015%. […] ME/CFS is not uncommon in England and represents a significant burden to patients and society.
#38 LSHTM LSHTM Research Online
https://researchonline.lshtm.ac.uk/116/
The overall estimated minimal yearly incidence was 0.015%. […] ME/CFS is not uncommon in England and represents a significant burden to patients and society. […] Both groups have high levels of need for service provision, including health and social care. […] We suggest combining the use of both the CDC-1994 and Canadian criteria for ascertainment of ME/CFS cases, alongside careful clinical phenotyping of study participants.
#39 What Is ME/CFS? – Open Medicine Foundation
https://www.omf.ngo/what-is-mecfs/
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a life-altering multi-system chronic, complex disease (msCCD). […] 20+ million worldwide have ME/CFS (pre-Long COVID). […] 3.3 million are affected in the USA alone. […] Estimated 70% cannot work. […] 25% are homebound. […] No diagnostic test. […] No FDA approved treatment. […] No cure. […] Huge economic burden: 36-51 billion dollars per year in the USA. […] ME/CFS affects men, women and children. Anyone. Any time. […] An NIH-funded study found that new cases of ME/CFS were 15 times higher than pre-pandemic levels. […] According to the results, 4.5% post-COVID-19 participants met ME/CFS diagnostic criteria, compared to 0.6% participants that had not been infected by SARS-CoV-2 virus. […] These findings provide additional evidence that infections, including those caused by SARS-CoV-2, can lead to ME/CFS.
#40 Incidence and prevalence of post-COVID-19 myalgic encephalomyelitis: A report from the observational RECOVER-Adult study | RECOVER COVID Initiative
https://recovercovid.org/publications/incidence-and-prevalence-post-covid-19-myalgic-encephalomyelitis-report-observational
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may occur after infection. […] To determine the incidence and prevalence of post-COVID-19 ME/CFS among adults enrolled in the Researching COVID to Enhance Recovery (RECOVER-Adult) study. […] The incidence rate of ME/CFS in participants followed from time of SARS-CoV-2 infection was 2.66 (95% CI 2.63-2.70) per 100 person-years while the rate in matched uninfected participants was 0.93 (95% CI 0.91-10.95) per 100 person-years: a hazard ratio of 4.93 (95% CI 3.62-6.71). […] The proportion of all RECOVER-Adult participants that met criteria for ME/CFS following SARS-CoV-2 infection was 4.5% (531 of 11,785) compared to 0.6% (9 of 1439) in uninfected participants. […] ME/CFS is a diagnosable sequela that develops at an increased rate following SARS-CoV-2 infection. […] These findings highlight the need for healthcare professionals to be aware that ME/CFS can develop after a COVID infection.
#41 Summary | Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | The National Academies Press
https://nap.nationalacademies.org/read/19012/chapter/2
Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that impose a burden of illness on millions of people in the United States and around the world. Somewhere between 836,000 and 2.5 million Americans are estimated to have these disorders (Jason et al., 1999, 2006b). The cause of ME/CFS remains unknown, although in many cases, symptoms may have been triggered by an infection or other prodromal event, such as immunization, anesthetics, physical trauma, exposure to environmental pollutants, chemicals and heavy metals, and rarely blood transfusions (Carruthers and van de Sande, 2005, p. 1). […] Diagnosing ME/CFS in the clinical setting remains a challenge. Patients often struggle with their illness for years before receiving a diagnosis, and an estimated 84 to 91 percent of patients affected by ME/CFS are not yet diagnosed (Jason et al., 2006b; Solomon and Reeves, 2004).
#42 Prevalence of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Prevalence_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
The prevalence of myalgic encephalomyelitis and chronic fatigue syndrome is estimated at 17-24 million worldwide. […] According to the National Center for Health Statistics (NCHS) during 20212022, 1.3% of adults in the United States had ME/CFS. This corresponds to about 3.35 million adults or 4.3 million people when extrapolating the number to include minors. […] In 2015, the Institute of Medicine (IOM) Report from the United States National Academy of Sciences estimated there were between 836,000 and 2.5 million patients in the U.S. […] A 2018 study based on insurance claims gave „a rough estimate for the number of patients who may be diagnosed with ME or CFS in the U.S.” as between 1.7 million and 3.38 million. […] The IOM Report estimated that between 84% and 91% of patients are not diagnosed. […] The report further stated „Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome.”
#43 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
Statistics on the prevalence of myalgic encephalomyelitis and chronic fatigue syndrome vary. The CDC estimates that one million people in the US have ME/CFS and as many as 17-24 million people worldwide have ME/CFS. […] A recent UK biobank study places that estimate at 30 million. […] In 2015, the Institute of Medicine Report estimated there were between 836,000 and 2.5 million ME/CFS patients in the United States. […] 90% of patients are not diagnosed. […] Twenty-five percent of ME/CFS patients have a very severe form of it. […] This 25% of patients are severely ill and are either bed-bound, wheelchair bound, or are housebound or nearly so. […] ME/CFS is more prevalent in women than men, can affect children or adults but is most common in adults between the ages of 30 to 50 years old, or ages 40-60 in the United States.
#44 Summary | Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | The National Academies Press
https://nap.nationalacademies.org/read/19012/chapter/2
Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that impose a burden of illness on millions of people in the United States and around the world. Somewhere between 836,000 and 2.5 million Americans are estimated to have these disorders (Jason et al., 1999, 2006b). The cause of ME/CFS remains unknown, although in many cases, symptoms may have been triggered by an infection or other prodromal event, such as immunization, anesthetics, physical trauma, exposure to environmental pollutants, chemicals and heavy metals, and rarely blood transfusions (Carruthers and van de Sande, 2005, p. 1). […] Diagnosing ME/CFS in the clinical setting remains a challenge. Patients often struggle with their illness for years before receiving a diagnosis, and an estimated 84 to 91 percent of patients affected by ME/CFS are not yet diagnosed (Jason et al., 2006b; Solomon and Reeves, 2004).
#45 Myalgic Encephalomyelitis: Causes, Symptoms, and Treatment
https://patient.info/doctor/myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs-pro
Myalgic encephalomyelitis (ME), or chronic fatigue syndrome (CFS), is a complex, chronic medical condition affecting multiple body systems and of unknown cause. It affects everyone differently. […] ME/CFS is not uncommon but the true prevalence is unknown and depends on the criteria used for diagnosis. […] The estimated prevalence is 0.1-0.5%. ME/CFS predominantly affects adults, with a peak age of onset of between 20 and 45 years with a female:male ratio of 3:1. […] Research has shown a higher incidence in socially deprived families. […] Diagnosing ME/CFS remains a challenge. Patients often struggle with their illness for years before an identification is made. […] There is currently no diagnostic test for ME/CFS and it is recognised on clinical grounds alone. […] ME/CFS is a relatively common cause of long-term sickness absence from school. Up to 2% of children have ME/CFS.
#46 Myalgic EncephalomyelitisÂ | PM&R KnowledgeNow
https://now.aapmr.org/myalgic-encephalomyelitis/
However, due to general lack of understanding of the disease process or definition and varying clinical guidance in the medical community, many cases of ME/CFS are not diagnosed. Additionally, because the cause of ME/CFS is unknown, there are no targeted strategies for preventing the development of the disease. […] Overall, many patients with ME/CFS continue to have functional impairments chronically. […] A delay in diagnosis has been shown to predict poorer outcomes. […] Education on the disease process and PEM phenomenon are important aspects of helping patients not only feel validated in their experience but also assist in improving quality of life and preventing acute exacerbations.
#47 Clinical Overview of ME/CFS | ME/CFS | CDC
https://www.cdc.gov/me-cfs/hcp/clinical-overview/index.html
The cause or causes of ME/CFS are still unknown. However, ME/CFS is increasingly viewed as an infection-associated chronic illness. This is because of the frequency of its association with infection and the symptom overlap with illnesses following known infections. […] No single infectious agent has been established as a cause of ME/CFS. However, up to 80% of patients develop ME/CFS following an acute viral-like illness. In most cases, the cause of the infection is unknown. It is possible that, in some people, an infection may lead to immune system changes that contribute to development of ME/CFS. […] Some patients report experiencing an accident, trauma, immobilization, surgery, or significant physical or emotional stress prior to onset of ME/CFS symptoms. […] ME/CFS onset can be acute or gradual. Gradual onset can occur over months or years. Acute onset may follow: A flu-like syndrome (fever, malaise, aches, respiratory symptoms).
#48 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
Infections are a risk factor for the development of ME/CFS. […] The vast majority of people diagnosed with ME/CFS report that their illness began after a virus or other infection, especially Epstein-Barr virus, Ross River virus and Q fever. […] One study found recurrent infections since the onset of ME/CFS increased the risk of more severe post-exertional malaise. […] The prognosis for ME/CFS is considered to be poor with only a minority (a median estimate of 5%) returning to pre-morbid levels of functioning. […] The majority of patients remains significantly impaired. […] A substantial improvement however is noted in an estimated 40% of patients and the prognosis in adolescents is considered to be better than in adults. […] One study found no increased risk of all cause mortality or mortality from cancer but an increased risk of suicide.
#49 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A preliminary survey among patients in Switzerland
https://pmc.ncbi.nlm.nih.gov/articles/PMC10149204/
The moment of onset appears to be memorable, as over 90% of participants could clearly describe when and how the disease started. This is consistent with the study by Chu et al. (2019) who also reported that 85% and 88% of the patients remembered a specific time and reason for the disease onset, respectively. The likelihood of this being an infectious disease or an intense period of perceived stress is high, and underlined by patients reports in our study, with 69% and 41% reporting these associations. […] The mean onset of the disease at 31.6 years of age is in line with data from other countries. Around 15% of the patients were younger than 18 years, meaning that they will enter adulthood and their productive work years with this chronic disease, and patients often suffer from ME/CFS for the rest of their lives. Our study showed that at the time of the survey, patients were in average already ill for 13.7 years on average, with over half of them (56.3%) having had ME/CFS for over 10 years. Moreover, none had fully recovered and half of the cohort stated that the disease had been getting worse over the years. These results support the urgent need for fast diagnosis and close follow-up of patients, so that overall severities, progression rates and co-morbidities can be reduced to the highest level. A pre-requisite is however, that physicians know and recognize the disease.
#50 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
In 72% of causes reported by ME/CFS patients, the onset follows an acute infection, for example a virus or bacterial infection. […] The prevalence rate is projected at 0.2%-0.4% although estimates vary widely due to different definitions and sampling methods used. […] Estimated incidence rates generally, the number of new cases in a single year vary from 0.025% to 0.3% of the population. […] Numerous studies have found the rates of ME/CFS to be substantially higher in adult women than in men, with estimates ranging from 75-85%. […] A higher preponderance of women has also been noted in numerous outbreaks including Los Angeles, Akureyri, Rockville, MD, Royal Free Hospital, and Punta Gorda, Florida. […] In some cases, this was thought to do with the occupational hazard of nursing, but this female-skewed sex ratio was also found in several outbreaks among the general population.
#51 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A preliminary survey among patients in Switzerland
https://pmc.ncbi.nlm.nih.gov/articles/PMC10149204/
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multi-factorial systemic chronic debilitating disease of poorly understood etiology and limited systematic evidence. The questionnaire and interview-based survey included 169 ME/CFS patients from the Swiss ME/CFS association. The majority of patients were females (72.2%), single (55.7%) and without children (62.5%). Only one third were working (full/part-time). The mean onset of ME/CFS was 31.6 years of age with 15% of patients being symptomatic before their 18th birthday. In this cohort, patients had documented ME/CFS for a mean 13.7 years, whereby half (50.3%) stated their condition was progressively worsening. Triggering events and times of disease onset were recalled by 90% of the participants. An infectious disease was associated with a singular or part of multiple events by 72.9% and 80.6%, respectively. Prior to disease onset, a third of the patients reported respiratory infections; followed by gastro-intestinal infections (15.4%) and tick-borne diseases (16.2%). Viral infections were recalled by 77.8% of the respondents, with Epstein Barr Virus being the most commonly reported agent. Patients self-reported an average number of 13 different symptoms, all described specific triggers of symptoms exacerbation and 82.2% suffered from co-morbidities. This study collated clinically relevant information on ME/CFS patients in Switzerland, highlighting the extent of disease severity, the associated factors negatively affecting daily life activities and work status as well as potential socio-economic impact.
#52 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
Infections are a risk factor for the development of ME/CFS. […] The vast majority of people diagnosed with ME/CFS report that their illness began after a virus or other infection, especially Epstein-Barr virus, Ross River virus and Q fever. […] One study found recurrent infections since the onset of ME/CFS increased the risk of more severe post-exertional malaise. […] The prognosis for ME/CFS is considered to be poor with only a minority (a median estimate of 5%) returning to pre-morbid levels of functioning. […] The majority of patients remains significantly impaired. […] A substantial improvement however is noted in an estimated 40% of patients and the prognosis in adolescents is considered to be better than in adults. […] One study found no increased risk of all cause mortality or mortality from cancer but an increased risk of suicide.
#53 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A preliminary survey among patients in Switzerland
https://pmc.ncbi.nlm.nih.gov/articles/PMC10149204/
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multi-factorial systemic chronic debilitating disease of poorly understood etiology and limited systematic evidence. The questionnaire and interview-based survey included 169 ME/CFS patients from the Swiss ME/CFS association. The majority of patients were females (72.2%), single (55.7%) and without children (62.5%). Only one third were working (full/part-time). The mean onset of ME/CFS was 31.6 years of age with 15% of patients being symptomatic before their 18th birthday. In this cohort, patients had documented ME/CFS for a mean 13.7 years, whereby half (50.3%) stated their condition was progressively worsening. Triggering events and times of disease onset were recalled by 90% of the participants. An infectious disease was associated with a singular or part of multiple events by 72.9% and 80.6%, respectively. Prior to disease onset, a third of the patients reported respiratory infections; followed by gastro-intestinal infections (15.4%) and tick-borne diseases (16.2%). Viral infections were recalled by 77.8% of the respondents, with Epstein Barr Virus being the most commonly reported agent. Patients self-reported an average number of 13 different symptoms, all described specific triggers of symptoms exacerbation and 82.2% suffered from co-morbidities. This study collated clinically relevant information on ME/CFS patients in Switzerland, highlighting the extent of disease severity, the associated factors negatively affecting daily life activities and work status as well as potential socio-economic impact.
#54 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A preliminary survey among patients in Switzerland
https://pmc.ncbi.nlm.nih.gov/articles/PMC10149204/
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multi-factorial systemic chronic debilitating disease of poorly understood etiology and limited systematic evidence. The questionnaire and interview-based survey included 169 ME/CFS patients from the Swiss ME/CFS association. The majority of patients were females (72.2%), single (55.7%) and without children (62.5%). Only one third were working (full/part-time). The mean onset of ME/CFS was 31.6 years of age with 15% of patients being symptomatic before their 18th birthday. In this cohort, patients had documented ME/CFS for a mean 13.7 years, whereby half (50.3%) stated their condition was progressively worsening. Triggering events and times of disease onset were recalled by 90% of the participants. An infectious disease was associated with a singular or part of multiple events by 72.9% and 80.6%, respectively. Prior to disease onset, a third of the patients reported respiratory infections; followed by gastro-intestinal infections (15.4%) and tick-borne diseases (16.2%). Viral infections were recalled by 77.8% of the respondents, with Epstein Barr Virus being the most commonly reported agent. Patients self-reported an average number of 13 different symptoms, all described specific triggers of symptoms exacerbation and 82.2% suffered from co-morbidities. This study collated clinically relevant information on ME/CFS patients in Switzerland, highlighting the extent of disease severity, the associated factors negatively affecting daily life activities and work status as well as potential socio-economic impact.
#55 Clinical Overview of ME/CFS | ME/CFS | CDC
https://www.cdc.gov/me-cfs/hcp/clinical-overview/index.html
The cause or causes of ME/CFS are still unknown. However, ME/CFS is increasingly viewed as an infection-associated chronic illness. This is because of the frequency of its association with infection and the symptom overlap with illnesses following known infections. […] No single infectious agent has been established as a cause of ME/CFS. However, up to 80% of patients develop ME/CFS following an acute viral-like illness. In most cases, the cause of the infection is unknown. It is possible that, in some people, an infection may lead to immune system changes that contribute to development of ME/CFS. […] Some patients report experiencing an accident, trauma, immobilization, surgery, or significant physical or emotional stress prior to onset of ME/CFS symptoms. […] ME/CFS onset can be acute or gradual. Gradual onset can occur over months or years. Acute onset may follow: A flu-like syndrome (fever, malaise, aches, respiratory symptoms).
#56 Clinical Overview of ME/CFS | ME/CFS | CDC
https://www.cdc.gov/me-cfs/hcp/clinical-overview/index.html
The cause or causes of ME/CFS are still unknown. However, ME/CFS is increasingly viewed as an infection-associated chronic illness. This is because of the frequency of its association with infection and the symptom overlap with illnesses following known infections. […] No single infectious agent has been established as a cause of ME/CFS. However, up to 80% of patients develop ME/CFS following an acute viral-like illness. In most cases, the cause of the infection is unknown. It is possible that, in some people, an infection may lead to immune system changes that contribute to development of ME/CFS. […] Some patients report experiencing an accident, trauma, immobilization, surgery, or significant physical or emotional stress prior to onset of ME/CFS symptoms. […] ME/CFS onset can be acute or gradual. Gradual onset can occur over months or years. Acute onset may follow: A flu-like syndrome (fever, malaise, aches, respiratory symptoms).
#57 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – Symptoms and causes – Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complicated disorder. […] The cause of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is still unknown. […] A combination of factors may be involved, including: […] ME/CFS appears to run in some families, so some people may be born with a higher likelihood of developing the disorder. […] Some people develop ME/CFS symptoms after getting better from a viral or bacterial infection. […] Some people report that they experienced an injury, surgery or significant emotional stress shortly before their symptoms began. […] Some people with ME/CFS have problems converting the body’s fuel, primarily fats and sugars, into energy. […] ME/CFS can occur at any age, but it most commonly affects young to middle-aged adults.
#58 Myalgic encephalomyelitis/chronic fatigue syndrome – Wikipedia
https://en.wikipedia.org/wiki/Myalgic_encephalomyelitis/chronic_fatigue_syndrome
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling chronic illness. […] The hallmark symptom is post-exertional malaise, a worsening of the illness which can start immediately or hours to days after even minor physical or mental activity. […] ME/CFS often starts after an infection, such as mononucleosis. […] Before the COVID-19 pandemic, ME/CFS affected two to nine out of every 1,000 people, depending on the definition. […] However, many people fit ME/CFS diagnostic criteria after contracting long COVID. […] ME/CFS occurs more often in women than in men. […] It is more common in middle age, but can occur at all ages, including childhood. […] ME/CFS has a large social and economic impact, and the disease can be socially isolating. […] About a quarter of those affected are unable to leave their bed or home.
#59 Was ist ME/CFS? — Deutsche Gesellschaft fÃ¼r ME/CFS
https://www.mecfs.de/was-ist-me-cfs/
Die Myalgische Enzephalomyelitis/das Chronic Fatigue Syndrome ist eine schwere neuroimmunologische Erkrankung, die zu einem hohen Grad der kÃ¶rperlichen Behinderung fÃ¼hrt. […] Weltweit sind etwa 17 Mio. Menschen betroffen. In Deutschland wurde die Zahl ME/CFS-Betroffener vor der COVID-19-Pandemie auf etwa 250.000 geschÃ¤tzt, darunter 40.000 Kinder und Jugendliche. […] Expert*innen gehen davon aus, dass sich die Zahl der Erkrankten durch COVID-19 verdoppelt hat. […] Passend hierzu ergibt sich aus den Daten der KassenÃ¤rztlichen Bundesvereinigung ein Anstieg der BehandlungsfÃ¤lle mit ME/CFS auf 620.000 im Jahr 2023. […] Damit ist ME/CFS relativ weit verbreitet. […] Die WHO stuft ME/CFS seit 1969 als neurologische Erkrankung ein. […] ME/CFS ist ein eigenstÃ¤ndiges, komplexes Krankheitsbild und nicht mit dem Symptom Fatigue zu verwechseln, das ein typisches Begleitsymptom vieler chronisch-entzÃ¼ndlicher Erkrankungen ist.
#60 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
Around 25 percent of people with ME/CFS will have a mild form and are able to go to school or work either part-time or full-time, while reducing other activities. […] About 50 percent will have a moderate to severe form of ME/CFS and are unlikely to able to study or work. […] Another 25 percent will experience severe ME/CFS and have to stay at home or in bed. […] According to the CDC, up to the 75% of United States patients with ME/CFS are too ill to work, with rates of between 50 and 75% too ill to work worldwide. […] A study in France by Ghali et al 2020 looked at factors associated with increased severity of post-exertional malaise (PEM), the hallmark symptom, and found that onset at age 32 or later, a gastrointestinal illness triggering ME/CFS and recurrent infections during the illness all increased risk of having more severe PEM.
#61 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
Around 25 percent of people with ME/CFS will have a mild form and are able to go to school or work either part-time or full-time, while reducing other activities. […] About 50 percent will have a moderate to severe form of ME/CFS and are unlikely to able to study or work. […] Another 25 percent will experience severe ME/CFS and have to stay at home or in bed. […] According to the CDC, up to the 75% of United States patients with ME/CFS are too ill to work, with rates of between 50 and 75% too ill to work worldwide. […] A study in France by Ghali et al 2020 looked at factors associated with increased severity of post-exertional malaise (PEM), the hallmark symptom, and found that onset at age 32 or later, a gastrointestinal illness triggering ME/CFS and recurrent infections during the illness all increased risk of having more severe PEM.
#62 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
Around 25 percent of people with ME/CFS will have a mild form and are able to go to school or work either part-time or full-time, while reducing other activities. […] About 50 percent will have a moderate to severe form of ME/CFS and are unlikely to able to study or work. […] Another 25 percent will experience severe ME/CFS and have to stay at home or in bed. […] According to the CDC, up to the 75% of United States patients with ME/CFS are too ill to work, with rates of between 50 and 75% too ill to work worldwide. […] A study in France by Ghali et al 2020 looked at factors associated with increased severity of post-exertional malaise (PEM), the hallmark symptom, and found that onset at age 32 or later, a gastrointestinal illness triggering ME/CFS and recurrent infections during the illness all increased risk of having more severe PEM.
#63 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
Statistics on the prevalence of myalgic encephalomyelitis and chronic fatigue syndrome vary. The CDC estimates that one million people in the US have ME/CFS and as many as 17-24 million people worldwide have ME/CFS. […] A recent UK biobank study places that estimate at 30 million. […] In 2015, the Institute of Medicine Report estimated there were between 836,000 and 2.5 million ME/CFS patients in the United States. […] 90% of patients are not diagnosed. […] Twenty-five percent of ME/CFS patients have a very severe form of it. […] This 25% of patients are severely ill and are either bed-bound, wheelchair bound, or are housebound or nearly so. […] ME/CFS is more prevalent in women than men, can affect children or adults but is most common in adults between the ages of 30 to 50 years old, or ages 40-60 in the United States.
#64 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
Around 25 percent of people with ME/CFS will have a mild form and are able to go to school or work either part-time or full-time, while reducing other activities. […] About 50 percent will have a moderate to severe form of ME/CFS and are unlikely to able to study or work. […] Another 25 percent will experience severe ME/CFS and have to stay at home or in bed. […] According to the CDC, up to the 75% of United States patients with ME/CFS are too ill to work, with rates of between 50 and 75% too ill to work worldwide. […] A study in France by Ghali et al 2020 looked at factors associated with increased severity of post-exertional malaise (PEM), the hallmark symptom, and found that onset at age 32 or later, a gastrointestinal illness triggering ME/CFS and recurrent infections during the illness all increased risk of having more severe PEM.
#65 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A preliminary survey among patients in Switzerland
https://pmc.ncbi.nlm.nih.gov/articles/PMC10149204/
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multi-factorial systemic chronic debilitating disease of poorly understood etiology and limited systematic evidence. The questionnaire and interview-based survey included 169 ME/CFS patients from the Swiss ME/CFS association. The majority of patients were females (72.2%), single (55.7%) and without children (62.5%). Only one third were working (full/part-time). The mean onset of ME/CFS was 31.6 years of age with 15% of patients being symptomatic before their 18th birthday. In this cohort, patients had documented ME/CFS for a mean 13.7 years, whereby half (50.3%) stated their condition was progressively worsening. Triggering events and times of disease onset were recalled by 90% of the participants. An infectious disease was associated with a singular or part of multiple events by 72.9% and 80.6%, respectively. Prior to disease onset, a third of the patients reported respiratory infections; followed by gastro-intestinal infections (15.4%) and tick-borne diseases (16.2%). Viral infections were recalled by 77.8% of the respondents, with Epstein Barr Virus being the most commonly reported agent. Patients self-reported an average number of 13 different symptoms, all described specific triggers of symptoms exacerbation and 82.2% suffered from co-morbidities. This study collated clinically relevant information on ME/CFS patients in Switzerland, highlighting the extent of disease severity, the associated factors negatively affecting daily life activities and work status as well as potential socio-economic impact.
#66 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Comprehensive Review
https://pmc.ncbi.nlm.nih.gov/articles/PMC6787585/
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating chronic disease of unknown aetiology that is recognized by the World Health Organization (WHO) and the United States Center for Disease Control and Prevention (US CDC) as a disorder of the brain. […] The estimated prevalence is estimated at 0.10.5%. […] In a recent review of the ME/CFS literature reported by The Institute of Medicine (IOM) of the United States (US), it was estimated that between 836,000 and 2.5 million Americans suffer from ME/CFS, causing an annual financial cost that ranges between 1724 billion (USD) dollars per year. […] ME/CFS constitutes a particular enigmatic, debilitating and costly significant public health problem. […] The disease affects all ages, races and socioeconomic groups and some studies showed that approximately three to four times as many women as men present the symptoms.
#67 Summary | Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | The National Academies Press
https://nap.nationalacademies.org/read/19012/chapter/2
ME/CFS can cause significant impairment and disability that have negative economic consequences at both the individual and the societal level. At least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives (Marshall et al., 2011; NIH, 2011; Shepherd and Chaudhuri, 2001). The direct and indirect economic costs of ME/CFS to society have been estimated at $17 to $24 billion annually (Jason et al., 2008), $9.1 billion of which has been attributed to lost household and labor force productivity (Reynolds et al., 2004). […] The primary message of this report is that ME/CFS is a serious, chronic, complex, and systemic disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is real. It is not appropriate to dismiss these patients by saying, I am chronically fatigued, too.
#68 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Comprehensive Review
https://pmc.ncbi.nlm.nih.gov/articles/PMC6787585/
The prevalence of ME/CFS varies among different studies depending on how this pathological condition is defined, the population surveyed, and the employed methodology. […] ME/CFS is an endemic disorder that affects all racial/ethnic groups and is seen across all socioeconomic strata. […] The median duration of the illness is approximately seven years, a quarter of those with the disease are unemployed or disabled, and the average affected family forgoes approximately $20,000 in annual earnings and wages. […] The prognosis of patients with ME/CFS is variable. […] Death in patients with ME/CFS is usually caused by another co-existing illness, in which cancer and cardiovascular abnormalities are the most common causes of death among this population. […] The primary symptom is the post-exertional fatigue accompanied by various neurological, cardiovascular, respiratory, and gastrointestinal manifestations.
#69 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Comprehensive Review
https://pmc.ncbi.nlm.nih.gov/articles/PMC6787585/
The prevalence of ME/CFS varies among different studies depending on how this pathological condition is defined, the population surveyed, and the employed methodology. […] ME/CFS is an endemic disorder that affects all racial/ethnic groups and is seen across all socioeconomic strata. […] The median duration of the illness is approximately seven years, a quarter of those with the disease are unemployed or disabled, and the average affected family forgoes approximately $20,000 in annual earnings and wages. […] The prognosis of patients with ME/CFS is variable. […] Death in patients with ME/CFS is usually caused by another co-existing illness, in which cancer and cardiovascular abnormalities are the most common causes of death among this population. […] The primary symptom is the post-exertional fatigue accompanied by various neurological, cardiovascular, respiratory, and gastrointestinal manifestations.
#70 The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) | PLOS One
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421
Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is a common, severe condition affecting 0.2 to 0.4 per cent of the population. […] Even though the condition is disabling, severe and common, there is, to the authors knowledge, no Danish or recent international health-related quality of life (HRQol) EQ-5D-3L score estimated. […] The aim of this study is to estimate HRQoL scores using the EQ-5D-3L for ME/CFS patients with Danish national time trade trade-off tariffs. […] The EQ-5D-3L-based HRQoL of ME/CFS is significantly lower than the population mean and the lowest of all the compared conditions. […] The adjusted analysis confirms that poor HRQoL of ME/CFS is distinctly different from and not a proxy of the other included conditions. […] The study provides the first Danish EQ-5D-3L preference scores for ME/CFS patients as well as the newest EQ-5D-3L estimates for use internationally in health economics, health-care planning and research.
#71 The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) | PLOS One
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421
In conclusion, the EQ-5D-3L-based HRQoL of ME/CFS is significantly lower than the population mean. In fact, the ME/CFS HRQoL in this study was the lowest of all the compared conditions in both the unadjusted analysis and in the adjusted regression analysis. […] The adjusted regression analysis indicates that the HRQoL of MF/CFS is not a proxy of the 18 other included conditions.
#72 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A preliminary survey among patients in Switzerland
https://pmc.ncbi.nlm.nih.gov/articles/PMC10149204/
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multi-factorial systemic chronic debilitating disease of poorly understood etiology and limited systematic evidence. The questionnaire and interview-based survey included 169 ME/CFS patients from the Swiss ME/CFS association. The majority of patients were females (72.2%), single (55.7%) and without children (62.5%). Only one third were working (full/part-time). The mean onset of ME/CFS was 31.6 years of age with 15% of patients being symptomatic before their 18th birthday. In this cohort, patients had documented ME/CFS for a mean 13.7 years, whereby half (50.3%) stated their condition was progressively worsening. Triggering events and times of disease onset were recalled by 90% of the participants. An infectious disease was associated with a singular or part of multiple events by 72.9% and 80.6%, respectively. Prior to disease onset, a third of the patients reported respiratory infections; followed by gastro-intestinal infections (15.4%) and tick-borne diseases (16.2%). Viral infections were recalled by 77.8% of the respondents, with Epstein Barr Virus being the most commonly reported agent. Patients self-reported an average number of 13 different symptoms, all described specific triggers of symptoms exacerbation and 82.2% suffered from co-morbidities. This study collated clinically relevant information on ME/CFS patients in Switzerland, highlighting the extent of disease severity, the associated factors negatively affecting daily life activities and work status as well as potential socio-economic impact.
#73 Discriminating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and comorbid conditions using metabolomics in UK Biobank | Communications Medicine
https://www.nature.com/articles/s43856-024-00669-7
The ME/CFS cohort comprised 74% females, consistent with a 3:1 female-to-male ratio previously reported. […] The preponderance of females was also observed in depression, IBS, hypothyroidism, and migraine cohorts. […] The ME/CFS cohort had a significantly higher proportion of participants reporting tiredness/lethargy (89%) and overall pain (81%). […] We found that 83% of the ME/CFS cohort presented with multiple illnesses, reporting 272 different comorbid conditions. […] Comorbid conditions reported at a frequency 5% in ME/CFS were compared to the C1 cohort, defined as a non-ME/CFS population inclusive of patients with disease (but excluding ME/CFS) and healthy participants, to identify comorbid conditions that were more prevalent in ME/CFS. […] Depression, asthma, IBS, hypothyroidism, hay fever and migraine were significantly increased in ME/CFS.
#74 Discriminating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and comorbid conditions using metabolomics in UK Biobank | Communications Medicine
https://www.nature.com/articles/s43856-024-00669-7
The ME/CFS cohort comprised 74% females, consistent with a 3:1 female-to-male ratio previously reported. […] The preponderance of females was also observed in depression, IBS, hypothyroidism, and migraine cohorts. […] The ME/CFS cohort had a significantly higher proportion of participants reporting tiredness/lethargy (89%) and overall pain (81%). […] We found that 83% of the ME/CFS cohort presented with multiple illnesses, reporting 272 different comorbid conditions. […] Comorbid conditions reported at a frequency 5% in ME/CFS were compared to the C1 cohort, defined as a non-ME/CFS population inclusive of patients with disease (but excluding ME/CFS) and healthy participants, to identify comorbid conditions that were more prevalent in ME/CFS. […] Depression, asthma, IBS, hypothyroidism, hay fever and migraine were significantly increased in ME/CFS.
#75 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – Symptoms and causes – Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490
Women are diagnosed with ME/CFS much more often than men, but it may be that women are simply more likely to report their symptoms to a doctor. […] People who have a history of other complex medical problems, such as fibromyalgia or postural orthostatic tachycardia syndrome, may be more likely to develop ME/CFS. […] Symptoms of ME/CFS can come and go, and often are triggered by physical activity or emotional stress. […] Many people may be too weak to get out of bed at different points during their illness. Some may need to use a wheelchair.
#76 COVID-19 May Be a Trigger for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | University at Albany
https://www.albany.edu/cihs/news/2022-covid-19-may-be-trigger-myalgic-encephalomyelitischronic-fatigue-syndrome
UAlbany researcher Roxana Moslehi from the Department of Epidemiology and Biostatistics is conducting important investigations on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to better understand the illness, including its potential connection to cancer, auto-immune disease, and long-haul COVID-19. […] Research suggests that COVID-19 may be a trigger for ME/CFS. […] It is estimated that in the wake of the COVID-19 pandemic, more than 10 million new ME/CFS cases may be triggered around the world, Moslehi explains. […] The study found that those with ME/CFS were five times more likely to have a family history of auto-immune diseases than the control group. […] Our multidimensional analysis of pedigree, epidemiologic, and molecular data not only provides the most objective evidence to date that ME/CFS may be an auto-immune disease it provides etiologic clues and leads for prevention says Moslehi. […] The ultimate goal is to conduct an integrative analysis of multi-omics (genomics, proteomics, transcriptomics) data to gain deeper insight into the biologic mechanisms of ME/CFS and identify druggable targets for ME/CFS therapy, she says.
#77 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Comprehensive Review
https://pmc.ncbi.nlm.nih.gov/articles/PMC6787585/
The prevalence of ME/CFS varies among different studies depending on how this pathological condition is defined, the population surveyed, and the employed methodology. […] ME/CFS is an endemic disorder that affects all racial/ethnic groups and is seen across all socioeconomic strata. […] The median duration of the illness is approximately seven years, a quarter of those with the disease are unemployed or disabled, and the average affected family forgoes approximately $20,000 in annual earnings and wages. […] The prognosis of patients with ME/CFS is variable. […] Death in patients with ME/CFS is usually caused by another co-existing illness, in which cancer and cardiovascular abnormalities are the most common causes of death among this population. […] The primary symptom is the post-exertional fatigue accompanied by various neurological, cardiovascular, respiratory, and gastrointestinal manifestations.
#78 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Comprehensive Review
https://pmc.ncbi.nlm.nih.gov/articles/PMC6787585/
The NK cells are granular lymphocytes that play an important role at the interface between innate and adaptive immunity. […] The surface markers in NK cells indicate different subtypes with different functions. […] The hypofunction of the HPA axis as manifested by a low salivary cortisol-awakening response is the most replicated biological finding in ME/CFS adult patients. […] The findings in ME/CFS could be explained by at least two different mechanisms: (a) Activation of immune-inflammatory pathways is secondary to HPA axis hypofunction by the attenuation of negative feedback of the HPA axis hormones on the immune system, and (b) chronic activation of immune-inflammatory pathways play a causative role in HPA axis hypofunction. […] The repeated activation of immune-inflammatory pathways in ME/CFS, including increased levels of pro-inflammatory cytokines, may be influenced by the HPA axis hypofunction. […] ME/CFS remains a challenge for the biomedical community. […] Longitudinal studies of varying duration have shown that although 1764% of the patients with ME/CFS improve, less than 10% fully recover, and another 1020% worsen during follow-up.
#79 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Comprehensive Review
https://pmc.ncbi.nlm.nih.gov/articles/PMC6787585/
The prevalence of ME/CFS varies among different studies depending on how this pathological condition is defined, the population surveyed, and the employed methodology. […] ME/CFS is an endemic disorder that affects all racial/ethnic groups and is seen across all socioeconomic strata. […] The median duration of the illness is approximately seven years, a quarter of those with the disease are unemployed or disabled, and the average affected family forgoes approximately $20,000 in annual earnings and wages. […] The prognosis of patients with ME/CFS is variable. […] Death in patients with ME/CFS is usually caused by another co-existing illness, in which cancer and cardiovascular abnormalities are the most common causes of death among this population. […] The primary symptom is the post-exertional fatigue accompanied by various neurological, cardiovascular, respiratory, and gastrointestinal manifestations.
#80 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A preliminary survey among patients in Switzerland
https://pmc.ncbi.nlm.nih.gov/articles/PMC10149204/
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multi-factorial systemic chronic debilitating disease of poorly understood etiology and limited systematic evidence. The questionnaire and interview-based survey included 169 ME/CFS patients from the Swiss ME/CFS association. The majority of patients were females (72.2%), single (55.7%) and without children (62.5%). Only one third were working (full/part-time). The mean onset of ME/CFS was 31.6 years of age with 15% of patients being symptomatic before their 18th birthday. In this cohort, patients had documented ME/CFS for a mean 13.7 years, whereby half (50.3%) stated their condition was progressively worsening. Triggering events and times of disease onset were recalled by 90% of the participants. An infectious disease was associated with a singular or part of multiple events by 72.9% and 80.6%, respectively. Prior to disease onset, a third of the patients reported respiratory infections; followed by gastro-intestinal infections (15.4%) and tick-borne diseases (16.2%). Viral infections were recalled by 77.8% of the respondents, with Epstein Barr Virus being the most commonly reported agent. Patients self-reported an average number of 13 different symptoms, all described specific triggers of symptoms exacerbation and 82.2% suffered from co-morbidities. This study collated clinically relevant information on ME/CFS patients in Switzerland, highlighting the extent of disease severity, the associated factors negatively affecting daily life activities and work status as well as potential socio-economic impact.
#81 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A preliminary survey among patients in Switzerland
https://pmc.ncbi.nlm.nih.gov/articles/PMC10149204/
The moment of onset appears to be memorable, as over 90% of participants could clearly describe when and how the disease started. This is consistent with the study by Chu et al. (2019) who also reported that 85% and 88% of the patients remembered a specific time and reason for the disease onset, respectively. The likelihood of this being an infectious disease or an intense period of perceived stress is high, and underlined by patients reports in our study, with 69% and 41% reporting these associations. […] The mean onset of the disease at 31.6 years of age is in line with data from other countries. Around 15% of the patients were younger than 18 years, meaning that they will enter adulthood and their productive work years with this chronic disease, and patients often suffer from ME/CFS for the rest of their lives. Our study showed that at the time of the survey, patients were in average already ill for 13.7 years on average, with over half of them (56.3%) having had ME/CFS for over 10 years. Moreover, none had fully recovered and half of the cohort stated that the disease had been getting worse over the years. These results support the urgent need for fast diagnosis and close follow-up of patients, so that overall severities, progression rates and co-morbidities can be reduced to the highest level. A pre-requisite is however, that physicians know and recognize the disease.
#82 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
Infections are a risk factor for the development of ME/CFS. […] The vast majority of people diagnosed with ME/CFS report that their illness began after a virus or other infection, especially Epstein-Barr virus, Ross River virus and Q fever. […] One study found recurrent infections since the onset of ME/CFS increased the risk of more severe post-exertional malaise. […] The prognosis for ME/CFS is considered to be poor with only a minority (a median estimate of 5%) returning to pre-morbid levels of functioning. […] The majority of patients remains significantly impaired. […] A substantial improvement however is noted in an estimated 40% of patients and the prognosis in adolescents is considered to be better than in adults. […] One study found no increased risk of all cause mortality or mortality from cancer but an increased risk of suicide.
#83 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
Infections are a risk factor for the development of ME/CFS. […] The vast majority of people diagnosed with ME/CFS report that their illness began after a virus or other infection, especially Epstein-Barr virus, Ross River virus and Q fever. […] One study found recurrent infections since the onset of ME/CFS increased the risk of more severe post-exertional malaise. […] The prognosis for ME/CFS is considered to be poor with only a minority (a median estimate of 5%) returning to pre-morbid levels of functioning. […] The majority of patients remains significantly impaired. […] A substantial improvement however is noted in an estimated 40% of patients and the prognosis in adolescents is considered to be better than in adults. […] One study found no increased risk of all cause mortality or mortality from cancer but an increased risk of suicide.
#84 Clinical Overview of ME/CFS | ME/CFS | CDC
https://www.cdc.gov/me-cfs/hcp/clinical-overview/index.html
The severity and frequency of symptoms varies among patients and by individual patient. Symptoms can fluctuate during the day, from day to day, and throughout the illness. […] ME/CFS is a biological illness, not a psychologic disorder. Patients are neither malingering nor seeking secondary gain. Patients have multiple pathophysiological changes that affect multiple organ systems. […] The percentage of ME/CFS patients who recover is not well-studied. However, there is evidence and experience that early diagnosis and timely and appropriate management may play a role. […] More studies are needed. However, most experts agree that children and teenagers have a better chance of full or partial recovery from ME/CFS than adults.
#85 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
Infections are a risk factor for the development of ME/CFS. […] The vast majority of people diagnosed with ME/CFS report that their illness began after a virus or other infection, especially Epstein-Barr virus, Ross River virus and Q fever. […] One study found recurrent infections since the onset of ME/CFS increased the risk of more severe post-exertional malaise. […] The prognosis for ME/CFS is considered to be poor with only a minority (a median estimate of 5%) returning to pre-morbid levels of functioning. […] The majority of patients remains significantly impaired. […] A substantial improvement however is noted in an estimated 40% of patients and the prognosis in adolescents is considered to be better than in adults. […] One study found no increased risk of all cause mortality or mortality from cancer but an increased risk of suicide.
#86 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
Suicide risk was increased 6.85 compared to the general population. […] A Spanish study found a suicide risk of 12.75% versus 2.3% in the general population. […] A 2006 study by Leonard Jason found that ME/CFS patients died of cancer, heart failure and suicide at considerable younger age than the general population.
#87 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
Suicide risk was increased 6.85 compared to the general population. […] A Spanish study found a suicide risk of 12.75% versus 2.3% in the general population. […] A 2006 study by Leonard Jason found that ME/CFS patients died of cancer, heart failure and suicide at considerable younger age than the general population.
#88 Frontiers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer
https://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2017.00121/full
Myalgic encephalomyelitis/chronic fatigue syndrome is globally endemic. Most cases are sporadic, but cluster outbreaks have occurred worldwide. In several outbreaks the illness has been prominent in schoolchildren. In sporadic cases the disease is not thought to be transmitted by casual contact. ME/CFS affects all ages, races and socioeconomic groups. In sporadic ME/CFS, two peak ages of onset are seen, 11â19 years in young patients and 30â39 years in adults. Although adolescents are more likely than younger children to have ME/CFS, children as young as 2 years old have developed the illness. In adolescents, approximately 3â4 times as many girls as boys have ME/CFS. There are less data on the sex ratio in younger children. Estimates of the prevalence of pediatric ME/CFS vary in different studies from 0.1 to 0.5%. Research studies have shown that 84â91% of adult patients who satisfy diagnostic criteria for ME/CFS have not been diagnosed. We are aware of one comparable study having been done in children and adolescents.
#89 Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) | Journal of Translational Medicine | Full Text
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02269-0
The prevalence in the general population (1.45%) and in specific populations (1.62%) were higher than that in children and adolescents (0.89%). […] The total prevalence reported for Western and Asian populations were comparable (1.32-1.45% vs. 1.51-1.74%). […] Taken together, our findings illustrated the prevalence of CFS/ME, providing comprehensive information that can serve as an essential reference for further studies of CFS/ME. The overall estimated prevalence was 0.89% when based on the CDC-1994 definition and 1.14% when diagnosed via interview, and there was an approximately 1.5-fold predominance of women; however, the prevalence rates varied according to the case definitions and diagnostic methods used by as much as tenfold.
#90 Frontiers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer
https://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2017.00121/full
Myalgic encephalomyelitis/chronic fatigue syndrome is globally endemic. Most cases are sporadic, but cluster outbreaks have occurred worldwide. In several outbreaks the illness has been prominent in schoolchildren. In sporadic cases the disease is not thought to be transmitted by casual contact. ME/CFS affects all ages, races and socioeconomic groups. In sporadic ME/CFS, two peak ages of onset are seen, 11â19 years in young patients and 30â39 years in adults. Although adolescents are more likely than younger children to have ME/CFS, children as young as 2 years old have developed the illness. In adolescents, approximately 3â4 times as many girls as boys have ME/CFS. There are less data on the sex ratio in younger children. Estimates of the prevalence of pediatric ME/CFS vary in different studies from 0.1 to 0.5%. Research studies have shown that 84â91% of adult patients who satisfy diagnostic criteria for ME/CFS have not been diagnosed. We are aware of one comparable study having been done in children and adolescents.
#91 Frontiers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer
https://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2017.00121/full
Myalgic encephalomyelitis/chronic fatigue syndrome is the most common cause of prolonged school absence due to illness and undiagnosed ME/CFS is also a frequent cause of poor school attendance. Absence from school is usually due to poor physical and cognitive function. […] The physician might need to take an active role in supporting young people with ME/CFS and ensure that they receive an education that is appropriate for their physical condition. Long-term follow-up of young people with ME/CFS shows that engagement in education is a key issue that improves their ability to function regardless of whether or not they recover. Students can become demoralized if they are asked to withdraw from school. Education helps students to fulfill their aspirations and allows important aspects of their lives such as socializing with their peer group, to develop. It widens the range of possible occupations in later life. […] The young person with ME/CFS needs to learn to adapt to the reality of the illness, and integrate it into a meaningful life despite sometimes severe physical limitations. Above all, the young patient needs to develop a sense of achievement in her/his life, however, small.
#92 Clinical Overview of ME/CFS | ME/CFS | CDC
https://www.cdc.gov/me-cfs/hcp/clinical-overview/index.html
The severity and frequency of symptoms varies among patients and by individual patient. Symptoms can fluctuate during the day, from day to day, and throughout the illness. […] ME/CFS is a biological illness, not a psychologic disorder. Patients are neither malingering nor seeking secondary gain. Patients have multiple pathophysiological changes that affect multiple organ systems. […] The percentage of ME/CFS patients who recover is not well-studied. However, there is evidence and experience that early diagnosis and timely and appropriate management may play a role. […] More studies are needed. However, most experts agree that children and teenagers have a better chance of full or partial recovery from ME/CFS than adults.
#93 Frontiers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer
https://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2017.00121/full
Myalgic encephalomyelitis/chronic fatigue syndrome is the most common cause of prolonged school absence due to illness and undiagnosed ME/CFS is also a frequent cause of poor school attendance. Absence from school is usually due to poor physical and cognitive function. […] The physician might need to take an active role in supporting young people with ME/CFS and ensure that they receive an education that is appropriate for their physical condition. Long-term follow-up of young people with ME/CFS shows that engagement in education is a key issue that improves their ability to function regardless of whether or not they recover. Students can become demoralized if they are asked to withdraw from school. Education helps students to fulfill their aspirations and allows important aspects of their lives such as socializing with their peer group, to develop. It widens the range of possible occupations in later life. […] The young person with ME/CFS needs to learn to adapt to the reality of the illness, and integrate it into a meaningful life despite sometimes severe physical limitations. Above all, the young patient needs to develop a sense of achievement in her/his life, however, small.
#94 Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) | Journal of Translational Medicine | Full Text
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02269-0
However, due to the lack of an objective diagnostic tool, an accurate estimation of prevalence has been challenging. […] Accurate prevalence rate and defining factor-related prevalence characteristics are essential for exploring the pathophysiological basis of any disease. […] The average prevalence of CFS/ME based on the 56 prevalence data reported was 1.40-1.57% (95% CI: 0.98-1.82), and the pooled prevalence was 0.39% (5370 CFS/ME patients of 1387,787 participants). […] The meta-analysis yielded an estimate of 0.68% (95% CI: 0.48-0.97) with high heterogeneity I2=99.4%. […] Regarding gender-related differences, 24 data (from 21 studies that included information about gender) indicated an approximately 2.0-fold preponderance of females of 2.24-2.59% vs. 1.11-1.05% for the total population and 2.83 vs. 1.39% for the general population.
#95 6. Research and development – Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME-CFS): good practice statement – gov.scot
https://www.gov.scot/publications/scottish-good-practice-statement-myalgic-encephalomyelitis-chronic-fatigue-syndrome-cfs/pages/7/
Good epidemiological studies pivot on robust case definitions and diagnostic criteria. […] Regrettably, available diagnostic criteria for ME-CFS continue to prove controversial. […] Most research to date has been based on the US Centers for Disease Control and Prevention (CDC Fukuda definition 1994), while the more recent Canadian Consensus Document definition (2003 see Appendix 2) is favoured by a number of patient groups, including UK based ME-CFS charities, as they believe it better reflects patients’ experience of the illness. […] The effective relief of pain in ME-CFS is of paramount importance. […] There has been considerable recent interest in the role of vitamin D in the aetiology and treatment of a number of chronic diseases including ME-CFS. […] As indicated previously, it is vitally important that Scotland develops effective mechanisms for bringing together researchers, practising clinicians and people with ME-CFS to drive forward the optimal care, research and development agenda. […] ME-CFS is a strategic priority area for the MRC and they are continuing to promote research in this area and encourage applications for funding.
#96 Clinical features and diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome – UpToDate
https://www.uptodate.com/contents/clinical-features-and-diagnosis-of-myalgic-encephalomyelitis-chronic-fatigue-syndrome
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), previously known as chronic fatigue syndrome (CFS), is a chronic, often debilitating illness, characterized by severe fatigue and other symptoms. […] The epidemiology, pathophysiology, clinical manifestations, and diagnosis of ME/CFS are reviewed here. […] There are multiple case definitions for ME/CFS. […] We agree with the widely used case definition put forth by the National Academy of Medicine (NAM; previously the Institute of Medicine [IOM]) that focuses on the most specific features of the disease.
#97 Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) | Journal of Translational Medicine | Full Text
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02269-0
However, due to the lack of an objective diagnostic tool, an accurate estimation of prevalence has been challenging. […] Accurate prevalence rate and defining factor-related prevalence characteristics are essential for exploring the pathophysiological basis of any disease. […] The average prevalence of CFS/ME based on the 56 prevalence data reported was 1.40-1.57% (95% CI: 0.98-1.82), and the pooled prevalence was 0.39% (5370 CFS/ME patients of 1387,787 participants). […] The meta-analysis yielded an estimate of 0.68% (95% CI: 0.48-0.97) with high heterogeneity I2=99.4%. […] Regarding gender-related differences, 24 data (from 21 studies that included information about gender) indicated an approximately 2.0-fold preponderance of females of 2.24-2.59% vs. 1.11-1.05% for the total population and 2.83 vs. 1.39% for the general population.
#98 Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS) | NHMRCNHMRCNHMRC TaglineNHMRC Tagline
https://www.nhmrc.gov.au/health-advice/me-cfs
ME/CFS is a complex and debilitating condition, characterised by profound fatigue following exertion (not relieved by sleep or rest), unrefreshing sleep and cognitive impairment. […] The aetiology of ME/CFS is not established, although many hypotheses exist. […] Diagnosis is also a challenge in the absence of a diagnostic test and lack of a universally accepted case definition among researchers and clinicians. […] Diagnosis currently relies on elimination of other similar disease patterns and self-reported symptom based criteria. […] NHMRC has never issued or approved guidelines for ME/CFS and there are no current Australian clinical practice guidelines for ME/CFS. […] In August 2024, the Department of Health and Ageing allocated $1.1 million to NHMRC to develop clinical practice guidelines for ME/CFS.
#99 Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | Jason | Reviews in Health Care
https://journals.seedmedicalpublishers.com/index.php/rhc/article/view/280/377
A major limitation of this study and a comparable study in Australia was that the samples were obtained through physician referral; therefore, members of the community that do not or cannot access medical care for their symptoms were not included. […] The pediatric case definition for ME/CFS also diagnoses children and adolescents with subtype variations of ME/CFS for those who experience idiopathic chronic fatigue. […] Given the lack of effective treatments available, the prognosis for children and adolescents with ME/CFS tends to be poor. […] A lack of rigorous prevalence studies in this area limits the validity of current prevalence estimates; a pediatric case definition has been demonstrated to accurately distinguish between children with ME/CFS and controls; prognosis for children with ME/CFS is poor, and while health may improve, returning to pre-morbid functioning is rare. […] Future studies should aim to establish the prevalence rate of pediatric ME/CFS using a community-based sample, rather than relying on physician referral.
#100 Systematic Review of the Epidemiological Burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology – American ME and CFS Society
https://ammes.org/2020/06/02/systematic-review-of-the-epidemiological-burden-of-myalgic-encephalomyelitis-chronic-fatigue-syndrome-across-europe-current-evidence-and-euromene-research-recommendations-for-epidemiology/
This review aimed at determining the prevalence and incidence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in Europe. […] Prevalence ranged from 0.1% to 2.2%. […] In conclusion, studies on the prevalence and incidence of ME/CFS in Europe were scarce. Our findings point to the pressing need for well-designed and statistically powered epidemiological studies. […] EUROMENE recommends that future research is better conducted in the community, reviewing the clinical history of potential cases, obtaining additional objective information (when needed) and using adequate ME/CFS case definitions; namely, the Centers for Disease Control Prevention1994, Canadian Consensus Criteria, or Institute of Medicine criteria.
#101 LSHTM LSHTM Research Online
https://researchonline.lshtm.ac.uk/id/eprint/4660411/
This review aimed at determining the prevalence and incidence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in Europe. […] Prevalence ranged from 0.1% to 2.2%. […] In conclusion, studies on the prevalence and incidence of ME/CFS in Europe were scarce. Our findings point to the pressing need for well-designed and statistically powered epidemiological studies. […] EUROMENE recommends that future research is better conducted in the community, reviewing the clinical history of potential cases, obtaining additional objective information (when needed) and using adequate ME/CFS case definitions; namely, the Centers for Disease Control Prevention-1994, Canadian Consensus Criteria, or Institute of Medicine criteria.
#102 Prevalence and incidence of myalgic encephalomyelitis/chronic fatigue syndrome in Europeâthe Euro-epiME study from the European network EUROMENE: a protocol for a systematic review | BMJ Open
https://bmjopen.bmj.com/content/8/9/e020817
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic disease involving central nervous system and immune system disorders, as well as cardiovascular abnormalities. ME/CFS is characterised by severe chronic fatigue lasting for at least 6 months, including clinical symptoms such as tender cervical or axillary lymph nodes, muscle pain, joint pain without swelling or redness, post-exertional malaise for more than 24 hours and unrefreshing sleep. Studies on the epidemiology of ME/CFS in Europe only include single countries and, therefore, the prevalence and incidence of ME/CFS in Europe (as a whole) is unknown. One of the purposes of the European Network on ME/CFS (EUROMENE; European Union-funded COST Action; Reference number: 15111) is to address this gap in knowledge. We will systematically review the literature reporting figures from European countries to provide a robust summary and identify new challenges.
#103 California Emerging Infections Program Surveillance to Optimize Protocols for Early Identification and Subgrouping of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – Kaiser Permanente Division of Research
https://divisionofresearch.kaiserpermanente.org/studies/california-emerging-infections-program-surveillance-to-optimize-protocols-for-early-identification-and-subgrouping-of-myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs/
This 5-8 year project involves conducting active, syndromic surveillance of prolonged, unexplained fatigue, to advance the understanding of the development and early stages (first 2-5 years) of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS. […] We will then conduct prospective surveillance to better understand the early stages of ME/CFS.
#104 Prevalence and incidence of myalgic encephalomyelitis/chronic fatigue syndrome in Europeâthe Euro-epiME study from the European network EUROMENE: a protocol for a systematic review | BMJ Open
https://bmjopen.bmj.com/content/8/9/e020817
EUROMENE consists of six closely coordinated working groups. Working group 1 focuses on the epidemiology of ME/CFS and leads the European Epidemiological Study for ME/CFS (Euro-EpiME study). One specific aim of this study is to estimate the prevalence and incidence of ME/CFS in Europe. As a first step, we will systematically review the available literature from European countries in order to provide a robust summary and identify new challenges in the field. It seems likely that more data on the prevalence and incidence of ME/CFS will be needed, both for Europe as a whole and within the European countries. […] We aim to conduct a systematic review and, if possible, meta-analyses to determine the prevalence and incidence of ME/CFS in Europe. […] The findings of this systematic review will address a specific aim of the European network EUROMENE (ie, to summarise the available data of the prevalence and incidence of ME/CFS in Europe). The findings will be included in EUROMENE reports published in paper(s) in peer-reviewed journal(s) and presented at conferences and meetings.
#105 A Conversation about Myalgic Encephalomyelitis with Dr. Nina Muirhead – CIHR
https://cihr-irsc.gc.ca/e/52474.html
Myalgic encephalomyelitis (ME), formerly known as chronic fatigue syndrome (CFS) is a devastating, chronic, complex, multi-system disease. Approximately 600,000 individuals suffer from ME in Canada with a female to male ratio of 4:1 (similar to Multiple Sclerosis). It can affect children, adolescents and adults of all ages. Approximately 80% of cases are triggered by a viral infection. […] There are currently no biomarkers for ME, but a clinical diagnosis can be made using the Canadian Consensus Criteria (CCC). ME patients often present with complaints of crushing exhaustion not relieved by rest, pain or a general sense of feeling unwell that will not go away. […] Post-exertional malaise (PEM) is the cardinal feature that separates ME from other causes of fatigue. PEM is often referred to as a crash, flare or relapse and can be triggered by even minimal cognitive or physical exertion.
#106 Microbiome Disturbances Reported as Signature of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis | Columbia University Mailman School of Public Health
https://www.publichealth.columbia.edu/news/microbiome-disturbances-reported-signature-chronic-fatigue-syndrome-myalgic-encephalomyelitis
New research reveals differences in the gut microbiomes of people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) compared to those of healthy controls. […] Findings appear in the journal Cell Host Microbe. […] Their findings indicate that differences in gut microbes could serve as biomarkers to aid in diagnosis of ME/CFS. […] Understanding the connection between ME/CFS and disturbances in the gut microbiome may lead to ways to classify the disease and targets for therapeutic trials. […] Experts estimate there are between 800,000 and 2 million Americans with ME/CFS, a complex, debilitating disorder characterized by extreme fatigue after exertion and other symptoms including muscle and joint pain, cognitive dysfunction, sleep disturbance, and orthostatic intolerance. […] Currently, there is no diagnostic test for the disease; instead, patients are diagnosed based on a clinical examination and history and an exclusion of other disorders.
#107 Summary | Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | The National Academies Press
https://nap.nationalacademies.org/read/19012/chapter/2
Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that impose a burden of illness on millions of people in the United States and around the world. Somewhere between 836,000 and 2.5 million Americans are estimated to have these disorders (Jason et al., 1999, 2006b). The cause of ME/CFS remains unknown, although in many cases, symptoms may have been triggered by an infection or other prodromal event, such as immunization, anesthetics, physical trauma, exposure to environmental pollutants, chemicals and heavy metals, and rarely blood transfusions (Carruthers and van de Sande, 2005, p. 1). […] Diagnosing ME/CFS in the clinical setting remains a challenge. Patients often struggle with their illness for years before receiving a diagnosis, and an estimated 84 to 91 percent of patients affected by ME/CFS are not yet diagnosed (Jason et al., 2006b; Solomon and Reeves, 2004).
#108 Controversies related to ME/CFS – Wikipedia
https://en.wikipedia.org/wiki/Controversies_related_to_ME/CFS
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an illness with a long history of controversy. Some professionals within the medical community do not recognize ME/CFS as a genuine condition, nor is there agreement on its prevalence. […] The diagnosis is controversial, and its etiology is still not fully understood. […] ME/CFS suffers from a lack of awareness among clinical professionals. Despite being a relatively common and disabling disease, a large proportion of professionals are either unaware or dismissive of it. This often leads to patient neglect, which happens in clinical, government, bureaucratic, and research settings. […] Despite ample evidence that ME/CFS is an organic disease, many clinicians do not recognise it as genuine or underestimate its seriousness.
#109 Controversies related to ME/CFS – Wikipedia
https://en.wikipedia.org/wiki/Controversies_related_to_ME/CFS
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an illness with a long history of controversy. Some professionals within the medical community do not recognize ME/CFS as a genuine condition, nor is there agreement on its prevalence. […] The diagnosis is controversial, and its etiology is still not fully understood. […] ME/CFS suffers from a lack of awareness among clinical professionals. Despite being a relatively common and disabling disease, a large proportion of professionals are either unaware or dismissive of it. This often leads to patient neglect, which happens in clinical, government, bureaucratic, and research settings. […] Despite ample evidence that ME/CFS is an organic disease, many clinicians do not recognise it as genuine or underestimate its seriousness.
#110 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Research
https://mecfs.rti.org/research/
mapMECFS is a dynamic, searchable interface of a comprehensive data set of experimental results from studies focused on ME/CFS. The interactive data portal allows registered users to quickly search research results across biological disciplines, upload their results to the site, and integrate their data with other publicly available results. The goal of mapMECFS is to provide a platform that allows investigators to search and access data from across a wide range of biological and clinical studies on ME/CFS enabling a broader view of published research and to facilitate data sharing and discovery. […] searchMECFS is an interactive online search tool for identifying and requesting biospecimens and clinical data for ME/CFS research. It facilitates the use of biospecimens for research on ME/CFS by using the study participants’ demographic and clinical characteristics to identify specific biospecimens available for research purposes. The tool also enables researchers to determine biospecimen availability and helps initiate the process of applying for access to biospecimens to be used in research studies. Currently, searchMECFS provides access to data and biospecimens from the Chronic Fatigue Initiative (CFI) epidemiology study. The long-term goal is to add additional ME/CFS datasets and biospecimens to optimize the use of these valuable resources and advance the understanding of ME/CFS and its underlying biological mechanisms. […] Myalgic Encephalomyelitis (ME), also referred to as Chronic Fatigue Syndrome (CFS), is a multi-system disease that causes dysfunction of the neurological, immune, endocrine, and energy metabolism systems.
#111 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Research
https://mecfs.rti.org/research/
mapMECFS is a dynamic, searchable interface of a comprehensive data set of experimental results from studies focused on ME/CFS. The interactive data portal allows registered users to quickly search research results across biological disciplines, upload their results to the site, and integrate their data with other publicly available results. The goal of mapMECFS is to provide a platform that allows investigators to search and access data from across a wide range of biological and clinical studies on ME/CFS enabling a broader view of published research and to facilitate data sharing and discovery. […] searchMECFS is an interactive online search tool for identifying and requesting biospecimens and clinical data for ME/CFS research. It facilitates the use of biospecimens for research on ME/CFS by using the study participants’ demographic and clinical characteristics to identify specific biospecimens available for research purposes. The tool also enables researchers to determine biospecimen availability and helps initiate the process of applying for access to biospecimens to be used in research studies. Currently, searchMECFS provides access to data and biospecimens from the Chronic Fatigue Initiative (CFI) epidemiology study. The long-term goal is to add additional ME/CFS datasets and biospecimens to optimize the use of these valuable resources and advance the understanding of ME/CFS and its underlying biological mechanisms. […] Myalgic Encephalomyelitis (ME), also referred to as Chronic Fatigue Syndrome (CFS), is a multi-system disease that causes dysfunction of the neurological, immune, endocrine, and energy metabolism systems.
#112 Discriminating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and comorbid conditions using metabolomics in UK Biobank | Communications Medicine
https://www.nature.com/articles/s43856-024-00669-7
Diagnosing complex illnesses like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is complicated due to the diverse symptomology and presence of comorbid conditions. […] ME/CFS patients often present with multiple health issues, therefore, incorporating comorbidities into research can provide a more accurate understanding of the conditions symptomatology and severity, to better reflect real-life patient experiences. […] We performed association studies and machine learning on 1194 ME/CFS individuals with blood plasma nuclear magnetic resonance (NMR) metabolomics profiles, and seven exclusive comorbid cohorts: hypertension, depression, asthma, irritable bowel syndrome, hay fever, hypothyroidism, migraine and a non-diseased control group. […] We present a lipoprotein perspective on ME/CFS pathophysiology, highlighting gender-specific differences and identifying overlapping associations with comorbid conditions, specifically surface lipids, and ketone bodies from 168 significant individual biomarker associations.
#113 Discriminating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and comorbid conditions using metabolomics in UK Biobank | Communications Medicine
https://www.nature.com/articles/s43856-024-00669-7
This study provides an end-to-end analytical workflow that explores the potential clinical utility that association scores may have for ME/CFS and other difficult to diagnose conditions. […] Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is an illness with severe fatigue without a known cause. […] We wanted to find a way to easily identify people with this condition, so we used data from the UK Biobank to compare people with and without ME/CFS who had other medical problems. […] We developed a mathematical calculation, using 19 basic health factors and nine blood markers, which could classify ME/CFS and non-ME/CFS individuals correctly 83% of the time, and recognise this condition in individuals 70% of the time. […] This research could lead to a better way to diagnose ME/CFS and serve as an example for diseases lacking definite laboratory testing.
#114 Discriminating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and comorbid conditions using metabolomics in UK Biobank | Communications Medicine
https://www.nature.com/articles/s43856-024-00669-7
This study provides an end-to-end analytical workflow that explores the potential clinical utility that association scores may have for ME/CFS and other difficult to diagnose conditions. […] Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is an illness with severe fatigue without a known cause. […] We wanted to find a way to easily identify people with this condition, so we used data from the UK Biobank to compare people with and without ME/CFS who had other medical problems. […] We developed a mathematical calculation, using 19 basic health factors and nine blood markers, which could classify ME/CFS and non-ME/CFS individuals correctly 83% of the time, and recognise this condition in individuals 70% of the time. […] This research could lead to a better way to diagnose ME/CFS and serve as an example for diseases lacking definite laboratory testing.
#115 JMIR Research Protocols – Personalized Management of Fatigue in Individuals With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID Using a Smart Digital mHealth Solution: Protocol for a Participatory Design Approach
https://www.researchprotocols.org/2024/1/e50157/
Fatigue is the most common symptom in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID, impacting patients quality of life; however, there is currently a lack of evidence-based context-aware tools for fatigue self-management in these populations. […] The effective fatigue management of ME/CFS and long COVID would minimize the consequences of the disease, significantly impacting patients and caregivers quality of life. […] Despite the potential benefits of digital health solutions for the self-management of ME/CFS and long COVID, there are no evidence-based, personalized, and context-aware solutions designed specifically for supporting patients with ME/CFS or long COVID in fatigue self-management. […] The MyFatigue project will generate new knowledge on the relevance and relationships of factors impacting perceived fatigue severity in ME/CFS and long COVID, analyzing similarities and differences between both study populations.
#116 6. Research and development – Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME-CFS): good practice statement – gov.scot
https://www.gov.scot/publications/scottish-good-practice-statement-myalgic-encephalomyelitis-chronic-fatigue-syndrome-cfs/pages/7/
Guidance to support the diagnosis and management of ME/CFS in primary care. […] A simple initial search of one database alone MEDLINE (1950 to week 2 July 2010) indicates that 3667 research articles or letters have been published using the term: 'myalgic encephalitis mapped to chronic fatigue syndrome’, 266 of which have been published in 2009-10 (ovid). […] Ongoing research is required into ME-CFS to improve our understanding of the causes of the illness (aetiology), its prevalence and also to guide optimal management approaches. […] Epidemiological evidence is lacking in Scotland but a population prevalence of at least 0.2-0.4% is widely accepted, and over 20,000 people in Scotland may be affected. […] There is therefore a particular need to study: The prevalence and impact of all categories of the illness, particularly severe disease.
#117 Systematic Review of the Epidemiological Burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology – American ME and CFS Society
https://ammes.org/2020/06/02/systematic-review-of-the-epidemiological-burden-of-myalgic-encephalomyelitis-chronic-fatigue-syndrome-across-europe-current-evidence-and-euromene-research-recommendations-for-epidemiology/
This review aimed at determining the prevalence and incidence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in Europe. […] Prevalence ranged from 0.1% to 2.2%. […] In conclusion, studies on the prevalence and incidence of ME/CFS in Europe were scarce. Our findings point to the pressing need for well-designed and statistically powered epidemiological studies. […] EUROMENE recommends that future research is better conducted in the community, reviewing the clinical history of potential cases, obtaining additional objective information (when needed) and using adequate ME/CFS case definitions; namely, the Centers for Disease Control Prevention1994, Canadian Consensus Criteria, or Institute of Medicine criteria.
#118 LSHTM LSHTM Research Online
https://researchonline.lshtm.ac.uk/id/eprint/4660411/
This review aimed at determining the prevalence and incidence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in Europe. […] Prevalence ranged from 0.1% to 2.2%. […] In conclusion, studies on the prevalence and incidence of ME/CFS in Europe were scarce. Our findings point to the pressing need for well-designed and statistically powered epidemiological studies. […] EUROMENE recommends that future research is better conducted in the community, reviewing the clinical history of potential cases, obtaining additional objective information (when needed) and using adequate ME/CFS case definitions; namely, the Centers for Disease Control Prevention-1994, Canadian Consensus Criteria, or Institute of Medicine criteria.
#119 6. Research and development – Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME-CFS): good practice statement – gov.scot
https://www.gov.scot/publications/scottish-good-practice-statement-myalgic-encephalomyelitis-chronic-fatigue-syndrome-cfs/pages/7/
Guidance to support the diagnosis and management of ME/CFS in primary care. […] A simple initial search of one database alone MEDLINE (1950 to week 2 July 2010) indicates that 3667 research articles or letters have been published using the term: 'myalgic encephalitis mapped to chronic fatigue syndrome’, 266 of which have been published in 2009-10 (ovid). […] Ongoing research is required into ME-CFS to improve our understanding of the causes of the illness (aetiology), its prevalence and also to guide optimal management approaches. […] Epidemiological evidence is lacking in Scotland but a population prevalence of at least 0.2-0.4% is widely accepted, and over 20,000 people in Scotland may be affected. […] There is therefore a particular need to study: The prevalence and impact of all categories of the illness, particularly severe disease.
#120 Prevalence: How many people have ME/CFS in the UK? – The ME Association
https://meassociation.org.uk/2024/05/how-many-people-have-me-cfs-in-the-uk/
We might consider that the number of people with self-reported Long Covid whose ability to undertake everyday activities had been limited a lot (i.e., around 380,000 people from ONS data) could potentially meet the diagnostic criteria for ME/CFS. […] A new and comprehensive UK epidemiology study is clearly needed. […] While any decision to increase the estimated number of people affected by ME/CFS might have positive implications for future research funding, health and social care provision and for public recognition of ME/CFS, we need to be sure that any new figure can be justified.
#121 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Research
https://mecfs.rti.org/research/
mapMECFS is a dynamic, searchable interface of a comprehensive data set of experimental results from studies focused on ME/CFS. The interactive data portal allows registered users to quickly search research results across biological disciplines, upload their results to the site, and integrate their data with other publicly available results. The goal of mapMECFS is to provide a platform that allows investigators to search and access data from across a wide range of biological and clinical studies on ME/CFS enabling a broader view of published research and to facilitate data sharing and discovery. […] searchMECFS is an interactive online search tool for identifying and requesting biospecimens and clinical data for ME/CFS research. It facilitates the use of biospecimens for research on ME/CFS by using the study participants’ demographic and clinical characteristics to identify specific biospecimens available for research purposes. The tool also enables researchers to determine biospecimen availability and helps initiate the process of applying for access to biospecimens to be used in research studies. Currently, searchMECFS provides access to data and biospecimens from the Chronic Fatigue Initiative (CFI) epidemiology study. The long-term goal is to add additional ME/CFS datasets and biospecimens to optimize the use of these valuable resources and advance the understanding of ME/CFS and its underlying biological mechanisms. […] Myalgic Encephalomyelitis (ME), also referred to as Chronic Fatigue Syndrome (CFS), is a multi-system disease that causes dysfunction of the neurological, immune, endocrine, and energy metabolism systems.
#122 Controversies related to ME/CFS – Wikipedia
https://en.wikipedia.org/wiki/Controversies_related_to_ME/CFS
A substantial proportion of medical schools do not teach about ME/CFS, and the large majority do not provide clinical exposure to ME/CFS patients. […] Governments, medical institutions, and the medical community have been criticised for neglecting people with ME/CFS. […] A 2006 investigation by a group from the Parliament of the United Kingdom found there was not enough support in the UK for CFS patients in terms of access to government benefits and health care. […] Governments and health organisations have been criticised for their lack of funding into ME/CFS research. ME/CFS is one of the most underfunded diseases compared to disease burden. […] The funds are only approximately 3-7 percent of what comparable diseases are allocated. […] The economic impact of ME/CFS is estimated at 149-362 billion USD in the United States alone.
#123 Myalgic encephalomyelitis/chronic fatigue syndrome – Wikipedia
https://en.wikipedia.org/wiki/Myalgic_encephalomyelitis/chronic_fatigue_syndrome
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling chronic illness. […] The hallmark symptom is post-exertional malaise, a worsening of the illness which can start immediately or hours to days after even minor physical or mental activity. […] ME/CFS often starts after an infection, such as mononucleosis. […] Before the COVID-19 pandemic, ME/CFS affected two to nine out of every 1,000 people, depending on the definition. […] However, many people fit ME/CFS diagnostic criteria after contracting long COVID. […] ME/CFS occurs more often in women than in men. […] It is more common in middle age, but can occur at all ages, including childhood. […] ME/CFS has a large social and economic impact, and the disease can be socially isolating. […] About a quarter of those affected are unable to leave their bed or home.
#124 COVID-19 May Be a Trigger for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | University at Albany
https://www.albany.edu/cihs/news/2022-covid-19-may-be-trigger-myalgic-encephalomyelitischronic-fatigue-syndrome
UAlbany researcher Roxana Moslehi from the Department of Epidemiology and Biostatistics is conducting important investigations on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to better understand the illness, including its potential connection to cancer, auto-immune disease, and long-haul COVID-19. […] Research suggests that COVID-19 may be a trigger for ME/CFS. […] It is estimated that in the wake of the COVID-19 pandemic, more than 10 million new ME/CFS cases may be triggered around the world, Moslehi explains. […] The study found that those with ME/CFS were five times more likely to have a family history of auto-immune diseases than the control group. […] Our multidimensional analysis of pedigree, epidemiologic, and molecular data not only provides the most objective evidence to date that ME/CFS may be an auto-immune disease it provides etiologic clues and leads for prevention says Moslehi. […] The ultimate goal is to conduct an integrative analysis of multi-omics (genomics, proteomics, transcriptomics) data to gain deeper insight into the biologic mechanisms of ME/CFS and identify druggable targets for ME/CFS therapy, she says.
#125 Was ist ME/CFS? — Deutsche Gesellschaft fÃ¼r ME/CFS
https://www.mecfs.de/was-ist-me-cfs/
Nach der SARS-Pandemie 2002/2003 entwickelte ein Teil der Erkrankten ME/CFS. […] Seit Beginn der COVID-19-Pandemie zeigt sich ebenfalls, dass eine Subgruppe nach einer Coronainfektion ME/CFS entwickelt. […] Daher wird mit einer deutlichen Zunahme ME/CFS-Erkrankter gerechnet. […] Die genauen Mechanismen der Erkrankung sind bisher noch ungeklÃ¤rt. […] Ein validierter Biomarker fehlt bislang, sodass die Diagnose ME/CFS nach differenzialdiagnostischer AbklÃ¤rung anhand etablierter klinischer Kriterienkataloge gestellt wird. […] FÃ¼r ME/CFS gibt es bisher keine zugelassene kurative Behandlung oder Heilung. […] ME/CFS wird aktuell anhand klinischer Kriterien diagnostiziert. […] Nach der ICD (Internationale statistische Klassifikation der Krankheiten und verwandter Gesundheitsprobleme) in der Revision 10, wird ME/CFS mit dem DiagnoseschlÃ¼ssel G93.3 kodiert.
#126 Incidence and prevalence of post-COVID-19 myalgic encephalomyelitis: A report from the observational RECOVER-Adult study | RECOVER COVID Initiative
https://recovercovid.org/publications/incidence-and-prevalence-post-covid-19-myalgic-encephalomyelitis-report-observational
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may occur after infection. […] To determine the incidence and prevalence of post-COVID-19 ME/CFS among adults enrolled in the Researching COVID to Enhance Recovery (RECOVER-Adult) study. […] The incidence rate of ME/CFS in participants followed from time of SARS-CoV-2 infection was 2.66 (95% CI 2.63-2.70) per 100 person-years while the rate in matched uninfected participants was 0.93 (95% CI 0.91-10.95) per 100 person-years: a hazard ratio of 4.93 (95% CI 3.62-6.71). […] The proportion of all RECOVER-Adult participants that met criteria for ME/CFS following SARS-CoV-2 infection was 4.5% (531 of 11,785) compared to 0.6% (9 of 1439) in uninfected participants. […] ME/CFS is a diagnosable sequela that develops at an increased rate following SARS-CoV-2 infection. […] These findings highlight the need for healthcare professionals to be aware that ME/CFS can develop after a COVID infection.
#127 What Is ME/CFS? – Open Medicine Foundation
https://www.omf.ngo/what-is-mecfs/
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a life-altering multi-system chronic, complex disease (msCCD). […] 20+ million worldwide have ME/CFS (pre-Long COVID). […] 3.3 million are affected in the USA alone. […] Estimated 70% cannot work. […] 25% are homebound. […] No diagnostic test. […] No FDA approved treatment. […] No cure. […] Huge economic burden: 36-51 billion dollars per year in the USA. […] ME/CFS affects men, women and children. Anyone. Any time. […] An NIH-funded study found that new cases of ME/CFS were 15 times higher than pre-pandemic levels. […] According to the results, 4.5% post-COVID-19 participants met ME/CFS diagnostic criteria, compared to 0.6% participants that had not been infected by SARS-CoV-2 virus. […] These findings provide additional evidence that infections, including those caused by SARS-CoV-2, can lead to ME/CFS.
#128 Incidence and prevalence of post-COVID-19 myalgic encephalomyelitis: A report from the observational RECOVER-Adult study | RECOVER COVID Initiative
https://recovercovid.org/publications/incidence-and-prevalence-post-covid-19-myalgic-encephalomyelitis-report-observational
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may occur after infection. […] To determine the incidence and prevalence of post-COVID-19 ME/CFS among adults enrolled in the Researching COVID to Enhance Recovery (RECOVER-Adult) study. […] The incidence rate of ME/CFS in participants followed from time of SARS-CoV-2 infection was 2.66 (95% CI 2.63-2.70) per 100 person-years while the rate in matched uninfected participants was 0.93 (95% CI 0.91-10.95) per 100 person-years: a hazard ratio of 4.93 (95% CI 3.62-6.71). […] The proportion of all RECOVER-Adult participants that met criteria for ME/CFS following SARS-CoV-2 infection was 4.5% (531 of 11,785) compared to 0.6% (9 of 1439) in uninfected participants. […] ME/CFS is a diagnosable sequela that develops at an increased rate following SARS-CoV-2 infection. […] These findings highlight the need for healthcare professionals to be aware that ME/CFS can develop after a COVID infection.
#129 Was ist ME/CFS? — Deutsche Gesellschaft fÃ¼r ME/CFS
https://www.mecfs.de/was-ist-me-cfs/
Nach der SARS-Pandemie 2002/2003 entwickelte ein Teil der Erkrankten ME/CFS. […] Seit Beginn der COVID-19-Pandemie zeigt sich ebenfalls, dass eine Subgruppe nach einer Coronainfektion ME/CFS entwickelt. […] Daher wird mit einer deutlichen Zunahme ME/CFS-Erkrankter gerechnet. […] Die genauen Mechanismen der Erkrankung sind bisher noch ungeklÃ¤rt. […] Ein validierter Biomarker fehlt bislang, sodass die Diagnose ME/CFS nach differenzialdiagnostischer AbklÃ¤rung anhand etablierter klinischer Kriterienkataloge gestellt wird. […] FÃ¼r ME/CFS gibt es bisher keine zugelassene kurative Behandlung oder Heilung. […] ME/CFS wird aktuell anhand klinischer Kriterien diagnostiziert. […] Nach der ICD (Internationale statistische Klassifikation der Krankheiten und verwandter Gesundheitsprobleme) in der Revision 10, wird ME/CFS mit dem DiagnoseschlÃ¼ssel G93.3 kodiert.
#130 Chronic fatigue syndrome (CFS) | Better Health Channel
https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs
About 25% of people with ME/CFS are housebound or bedbound. […] ME/CFS can affect people of all ages, including the very young. […] There is very little information on getting older and ME/CFS, however people can develop ME/CFS at any age. […] Having a supportive community of family, friends, school, work, employers and health workers, who understand the potential seriousness of ME/CFS, can also help improve the quality of life of people living with ME/CFS. […] ME/CFS is not a psychological disorder. However, living with a chronic illness is challenging, especially one that involves missing out on normal life activities, and this may lead to mental health problems like anxiety or depression. […] Long-COVID may be several different conditions, as some people have persistent symptoms due to organ damage or symptoms from being on ventilation in hospital. Yet others have a condition which is similar or identical to ME/CFS, and for which PEM and exertion intolerance are key features.
#131 Chronic fatigue syndrome (CFS) | Better Health Channel
https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs
About 25% of people with ME/CFS are housebound or bedbound. […] ME/CFS can affect people of all ages, including the very young. […] There is very little information on getting older and ME/CFS, however people can develop ME/CFS at any age. […] Having a supportive community of family, friends, school, work, employers and health workers, who understand the potential seriousness of ME/CFS, can also help improve the quality of life of people living with ME/CFS. […] ME/CFS is not a psychological disorder. However, living with a chronic illness is challenging, especially one that involves missing out on normal life activities, and this may lead to mental health problems like anxiety or depression. […] Long-COVID may be several different conditions, as some people have persistent symptoms due to organ damage or symptoms from being on ventilation in hospital. Yet others have a condition which is similar or identical to ME/CFS, and for which PEM and exertion intolerance are key features.
#132 Prevalence: How many people have ME/CFS in the UK? – The ME Association
https://meassociation.org.uk/2024/05/how-many-people-have-me-cfs-in-the-uk/
We might consider that the number of people with self-reported Long Covid whose ability to undertake everyday activities had been limited a lot (i.e., around 380,000 people from ONS data) could potentially meet the diagnostic criteria for ME/CFS. […] A new and comprehensive UK epidemiology study is clearly needed. […] While any decision to increase the estimated number of people affected by ME/CFS might have positive implications for future research funding, health and social care provision and for public recognition of ME/CFS, we need to be sure that any new figure can be justified.
#133 Prevalence: How many people have ME/CFS in the UK? – The ME Association
https://meassociation.org.uk/2024/05/how-many-people-have-me-cfs-in-the-uk/
We might consider that the number of people with self-reported Long Covid whose ability to undertake everyday activities had been limited a lot (i.e., around 380,000 people from ONS data) could potentially meet the diagnostic criteria for ME/CFS. […] A new and comprehensive UK epidemiology study is clearly needed. […] While any decision to increase the estimated number of people affected by ME/CFS might have positive implications for future research funding, health and social care provision and for public recognition of ME/CFS, we need to be sure that any new figure can be justified.
#134 JMIR Research Protocols – Personalized Management of Fatigue in Individuals With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID Using a Smart Digital mHealth Solution: Protocol for a Participatory Design Approach
https://www.researchprotocols.org/2024/1/e50157/
Fatigue is the most common symptom in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID, impacting patients quality of life; however, there is currently a lack of evidence-based context-aware tools for fatigue self-management in these populations. […] The effective fatigue management of ME/CFS and long COVID would minimize the consequences of the disease, significantly impacting patients and caregivers quality of life. […] Despite the potential benefits of digital health solutions for the self-management of ME/CFS and long COVID, there are no evidence-based, personalized, and context-aware solutions designed specifically for supporting patients with ME/CFS or long COVID in fatigue self-management. […] The MyFatigue project will generate new knowledge on the relevance and relationships of factors impacting perceived fatigue severity in ME/CFS and long COVID, analyzing similarities and differences between both study populations.
#135 JMIR Research Protocols – Personalized Management of Fatigue in Individuals With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Long COVID Using a Smart Digital mHealth Solution: Protocol for a Participatory Design Approach
https://www.researchprotocols.org/2024/1/e50157/
The MyFatigue project aims to make a significant scientific and technical impact in the field of ME/CFS and long COVID. It seeks to advance the understanding of fatigue by investigating the influence of contextual and behavioral factors on its severity and identifying similarities and differences between ME/CFS and long COVID symptoms. […] The result of the described study has the potential to advance knowledge, develop personalized management strategies, involve stakeholders, and contribute to improving the well-being of individuals with ME/CFS and long COVID.
#136 Was ist ME/CFS? — Deutsche Gesellschaft fÃ¼r ME/CFS
https://www.mecfs.de/was-ist-me-cfs/
Die Myalgische Enzephalomyelitis/das Chronic Fatigue Syndrome ist eine schwere neuroimmunologische Erkrankung, die zu einem hohen Grad der kÃ¶rperlichen Behinderung fÃ¼hrt. […] Weltweit sind etwa 17 Mio. Menschen betroffen. In Deutschland wurde die Zahl ME/CFS-Betroffener vor der COVID-19-Pandemie auf etwa 250.000 geschÃ¤tzt, darunter 40.000 Kinder und Jugendliche. […] Expert*innen gehen davon aus, dass sich die Zahl der Erkrankten durch COVID-19 verdoppelt hat. […] Passend hierzu ergibt sich aus den Daten der KassenÃ¤rztlichen Bundesvereinigung ein Anstieg der BehandlungsfÃ¤lle mit ME/CFS auf 620.000 im Jahr 2023. […] Damit ist ME/CFS relativ weit verbreitet. […] Die WHO stuft ME/CFS seit 1969 als neurologische Erkrankung ein. […] ME/CFS ist ein eigenstÃ¤ndiges, komplexes Krankheitsbild und nicht mit dem Symptom Fatigue zu verwechseln, das ein typisches Begleitsymptom vieler chronisch-entzÃ¼ndlicher Erkrankungen ist.
#137 Was ist ME/CFS? — Deutsche Gesellschaft fÃ¼r ME/CFS
https://www.mecfs.de/was-ist-me-cfs/
Es gibt viele kleine Studien, die pathologische AuffÃ¤lligkeiten bei ME/CFS gefunden haben. […] In Deutschland gab es bis vor wenigen Jahren noch keine FÃ¶rderung der ME/CFS-Forschung. […] Seit ca. 2020 gibt es erste Ã¶ffentliche ForschungsfÃ¶rderungen. […] GroÃe deutsche Forschungsprojekte sind unter anderem das Projekt zur Grundlagenforschung IMMME sowie die Nationale Klinische Studiengruppe, welche Therapiestudien zu ME/CFS und dem Post-COVID-Syndrom durchfÃ¼hrt. […] Long COVID ist ein von Patient*innen etablierter Begriff fÃ¼r Ã¼ber Wochen oder Monate anhaltende neu aufgetretene Symptome nach einer akuten COVID-19-Erkrankung. […] Expert*innen rechnen daher mit einem drastischen Anstieg der Zahl der ME/CFS-Erkrankten weltweit.
#138 COVID-19 May Be a Trigger for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | University at Albany
https://www.albany.edu/cihs/news/2022-covid-19-may-be-trigger-myalgic-encephalomyelitischronic-fatigue-syndrome
UAlbany researcher Roxana Moslehi from the Department of Epidemiology and Biostatistics is conducting important investigations on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to better understand the illness, including its potential connection to cancer, auto-immune disease, and long-haul COVID-19. […] Research suggests that COVID-19 may be a trigger for ME/CFS. […] It is estimated that in the wake of the COVID-19 pandemic, more than 10 million new ME/CFS cases may be triggered around the world, Moslehi explains. […] The study found that those with ME/CFS were five times more likely to have a family history of auto-immune diseases than the control group. […] Our multidimensional analysis of pedigree, epidemiologic, and molecular data not only provides the most objective evidence to date that ME/CFS may be an auto-immune disease it provides etiologic clues and leads for prevention says Moslehi. […] The ultimate goal is to conduct an integrative analysis of multi-omics (genomics, proteomics, transcriptomics) data to gain deeper insight into the biologic mechanisms of ME/CFS and identify druggable targets for ME/CFS therapy, she says.
#139 Was ist ME/CFS? — Deutsche Gesellschaft fÃ¼r ME/CFS
https://www.mecfs.de/was-ist-me-cfs/
Die Myalgische Enzephalomyelitis/das Chronic Fatigue Syndrome ist eine schwere neuroimmunologische Erkrankung, die zu einem hohen Grad der kÃ¶rperlichen Behinderung fÃ¼hrt. […] Weltweit sind etwa 17 Mio. Menschen betroffen. In Deutschland wurde die Zahl ME/CFS-Betroffener vor der COVID-19-Pandemie auf etwa 250.000 geschÃ¤tzt, darunter 40.000 Kinder und Jugendliche. […] Expert*innen gehen davon aus, dass sich die Zahl der Erkrankten durch COVID-19 verdoppelt hat. […] Passend hierzu ergibt sich aus den Daten der KassenÃ¤rztlichen Bundesvereinigung ein Anstieg der BehandlungsfÃ¤lle mit ME/CFS auf 620.000 im Jahr 2023. […] Damit ist ME/CFS relativ weit verbreitet. […] Die WHO stuft ME/CFS seit 1969 als neurologische Erkrankung ein. […] ME/CFS ist ein eigenstÃ¤ndiges, komplexes Krankheitsbild und nicht mit dem Symptom Fatigue zu verwechseln, das ein typisches Begleitsymptom vieler chronisch-entzÃ¼ndlicher Erkrankungen ist.
#140 Myalgic EncephalomyelitisÂ | PM&R KnowledgeNow
https://now.aapmr.org/myalgic-encephalomyelitis/
Myalgic Encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is a disease process that is characterized by excessive fatigue, cognitive dysfunction, autonomic disruptions, pain and a variety of less common features. The symptoms are exacerbated by physical, emotional, and autonomic stressors and can significantly impair a patients day-to-day function. […] ME/CFS is thought to be up to three times more common in women. Although most patients diagnosed with ME/CFS are Caucasian, several studies suggest it may be more common in minority populations such as Latino and African American communities in addition to rural populations. […] It is estimated that there are around 1.7 to 3.8 million patients diagnosed with ME/CFS in the US based on 2017 estimate. Post COVID it is estimated that his number has risen significantly to about 5 to 9 million.
#141 Impact of COVID-19 on myalgic encephalomyelitis/chronic fatigue syndrome-like illness prevalence: A cross-sectional survey | PLOS One
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0309810
Our study estimates the prevalence of ME/CFS-like illness in the KPNC population and the percentage of ME/CFS-like illness occurring after COVID-19. It assesses factors associated with ME/CFS-like illness and describes the symptoms and physical, mental, emotional, social, and occupational functioning among persons with ME/CFS-like illness in a large, diverse, well-defined population. […] Our study suggests that vaccination has a protective effect against ME/CFS-like illness after COVID-19, which is consistent with current literature suggesting that COVID-19 vaccination reduces the risk of post-COVID-19 conditions. […] In our large, integrated health system, an estimated 1.67% of persons have ME/CFS-like illness. ME/CFS-like illness has a substantial long-term impact on overall health as persons with ME/CFS-like illness experience many severe symptoms and considerable reductions in physical, mental, emotional, social, and occupational functioning. In our study, 14.12% of those with ME/CFS-like illness developed it after a case of COVID-19, suggesting that the COVID-19 pandemic added to the overall burden of ME/CFS-like illness in our population.
#142 6. Research and development – Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME-CFS): good practice statement – gov.scot
https://www.gov.scot/publications/scottish-good-practice-statement-myalgic-encephalomyelitis-chronic-fatigue-syndrome-cfs/pages/7/
Good epidemiological studies pivot on robust case definitions and diagnostic criteria. […] Regrettably, available diagnostic criteria for ME-CFS continue to prove controversial. […] Most research to date has been based on the US Centers for Disease Control and Prevention (CDC Fukuda definition 1994), while the more recent Canadian Consensus Document definition (2003 see Appendix 2) is favoured by a number of patient groups, including UK based ME-CFS charities, as they believe it better reflects patients’ experience of the illness. […] The effective relief of pain in ME-CFS is of paramount importance. […] There has been considerable recent interest in the role of vitamin D in the aetiology and treatment of a number of chronic diseases including ME-CFS. […] As indicated previously, it is vitally important that Scotland develops effective mechanisms for bringing together researchers, practising clinicians and people with ME-CFS to drive forward the optimal care, research and development agenda. […] ME-CFS is a strategic priority area for the MRC and they are continuing to promote research in this area and encourage applications for funding.
#143 Clinical Overview of ME/CFS | ME/CFS | CDC
https://www.cdc.gov/me-cfs/hcp/clinical-overview/index.html
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, life-altering disease affecting many organ systems. It goes well beyond „being tired” and profoundly impacts patients’ quality of life and abilities. Patients frequently experience a substantial impairment in physical and mental function at some point in their illness. It’s estimated that as many as 3.3 million people in the United States have ME/CFS. The vast majority are undiagnosed. […] Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, chronic, debilitating disease. The disease is identified by three required symptoms and at least one of two additional symptoms. […] Many patients have multiple symptoms, in different systems. Long COVID brings greater attention to ME/CFS, as both illnesses share many of the same symptoms.
#144 COVID-19 May Be a Trigger for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | University at Albany
https://www.albany.edu/cihs/news/2022-covid-19-may-be-trigger-myalgic-encephalomyelitischronic-fatigue-syndrome
UAlbany researcher Roxana Moslehi from the Department of Epidemiology and Biostatistics is conducting important investigations on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to better understand the illness, including its potential connection to cancer, auto-immune disease, and long-haul COVID-19. […] Research suggests that COVID-19 may be a trigger for ME/CFS. […] It is estimated that in the wake of the COVID-19 pandemic, more than 10 million new ME/CFS cases may be triggered around the world, Moslehi explains. […] The study found that those with ME/CFS were five times more likely to have a family history of auto-immune diseases than the control group. […] Our multidimensional analysis of pedigree, epidemiologic, and molecular data not only provides the most objective evidence to date that ME/CFS may be an auto-immune disease it provides etiologic clues and leads for prevention says Moslehi. […] The ultimate goal is to conduct an integrative analysis of multi-omics (genomics, proteomics, transcriptomics) data to gain deeper insight into the biologic mechanisms of ME/CFS and identify druggable targets for ME/CFS therapy, she says.
#145 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Comprehensive Review
https://pmc.ncbi.nlm.nih.gov/articles/PMC6787585/
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating chronic disease of unknown aetiology that is recognized by the World Health Organization (WHO) and the United States Center for Disease Control and Prevention (US CDC) as a disorder of the brain. […] The estimated prevalence is estimated at 0.10.5%. […] In a recent review of the ME/CFS literature reported by The Institute of Medicine (IOM) of the United States (US), it was estimated that between 836,000 and 2.5 million Americans suffer from ME/CFS, causing an annual financial cost that ranges between 1724 billion (USD) dollars per year. […] ME/CFS constitutes a particular enigmatic, debilitating and costly significant public health problem. […] The disease affects all ages, races and socioeconomic groups and some studies showed that approximately three to four times as many women as men present the symptoms.
#146 Summary | Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | The National Academies Press
https://nap.nationalacademies.org/read/19012/chapter/2
ME/CFS can cause significant impairment and disability that have negative economic consequences at both the individual and the societal level. At least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives (Marshall et al., 2011; NIH, 2011; Shepherd and Chaudhuri, 2001). The direct and indirect economic costs of ME/CFS to society have been estimated at $17 to $24 billion annually (Jason et al., 2008), $9.1 billion of which has been attributed to lost household and labor force productivity (Reynolds et al., 2004). […] The primary message of this report is that ME/CFS is a serious, chronic, complex, and systemic disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is real. It is not appropriate to dismiss these patients by saying, I am chronically fatigued, too.
#147 Summary | Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | The National Academies Press
https://nap.nationalacademies.org/read/19012/chapter/2
ME/CFS can cause significant impairment and disability that have negative economic consequences at both the individual and the societal level. At least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives (Marshall et al., 2011; NIH, 2011; Shepherd and Chaudhuri, 2001). The direct and indirect economic costs of ME/CFS to society have been estimated at $17 to $24 billion annually (Jason et al., 2008), $9.1 billion of which has been attributed to lost household and labor force productivity (Reynolds et al., 2004). […] The primary message of this report is that ME/CFS is a serious, chronic, complex, and systemic disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is real. It is not appropriate to dismiss these patients by saying, I am chronically fatigued, too.
#148 ME/CFS Patient Education – Bateman Horne Center
https://batemanhornecenter.org/education/me-cfs/
Myalgic encephalomyelitis/chronic fatigue syndrome, commonly referred to as ME/CFS, is a disease characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort (physical, cognitive, emotional, orthostatic stressors). […] It is estimated that ME/CFS affects upwards of 3 million Americans, 80% of which remain undiagnosed, even after years of cycling through specialty care. […] The direct and indirect economic costs of ME/CFS on a societal level, have been estimated between $17-$24 billion annually, including $9.1 billion attributed to lost household and labor force productivity. […] A diagnosis of ME/CFS requires the patient to have three core symptoms: 1. Impairment of normal function accompanied by fatigue persisting 6 months 2. Post-exertional malaise (PEM) 3. Unrefreshing Sleep.
#149 2 Background | Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | The National Academies Press
https://nap.nationalacademies.org/read/19012/chapter/4
Patients with ME/CFS spend considerably more on health care than the general medical patient population. They also see more physicians and visit their health care providers more often relative to the general medical patient population. Many patients report barriers to accessing health care as well, including the nature of their illness and financial considerations. […] ME/CFS symptoms often are so debilitating that patients are unable to work or attend school full-time. A review of 15 studies conducted between 1966 and 2004 showed that unemployment rates among those with the disorder ranged from 35 to 69 percent in 13 of these studies. ME/CFS was found to account for $8,554 in lost household earnings, 19 percent of which was attributable to lower educational attainment. Another study, conducted among ME/CFS patients in Kansas, found that ME/CFS resulted in reduced household and labor force productivity that caused individual income losses of approximately $20,000 annually. […] The direct and indirect economic costs of ME/CFS to society are estimated to be approximately over $18 to $24 billion annually.
#150 2 Background | Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | The National Academies Press
https://nap.nationalacademies.org/read/19012/chapter/4
Patients with ME/CFS spend considerably more on health care than the general medical patient population. They also see more physicians and visit their health care providers more often relative to the general medical patient population. Many patients report barriers to accessing health care as well, including the nature of their illness and financial considerations. […] ME/CFS symptoms often are so debilitating that patients are unable to work or attend school full-time. A review of 15 studies conducted between 1966 and 2004 showed that unemployment rates among those with the disorder ranged from 35 to 69 percent in 13 of these studies. ME/CFS was found to account for $8,554 in lost household earnings, 19 percent of which was attributable to lower educational attainment. Another study, conducted among ME/CFS patients in Kansas, found that ME/CFS resulted in reduced household and labor force productivity that caused individual income losses of approximately $20,000 annually. […] The direct and indirect economic costs of ME/CFS to society are estimated to be approximately over $18 to $24 billion annually.
#151 2 Background | Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | The National Academies Press
https://nap.nationalacademies.org/read/19012/chapter/4
Patients with ME/CFS spend considerably more on health care than the general medical patient population. They also see more physicians and visit their health care providers more often relative to the general medical patient population. Many patients report barriers to accessing health care as well, including the nature of their illness and financial considerations. […] ME/CFS symptoms often are so debilitating that patients are unable to work or attend school full-time. A review of 15 studies conducted between 1966 and 2004 showed that unemployment rates among those with the disorder ranged from 35 to 69 percent in 13 of these studies. ME/CFS was found to account for $8,554 in lost household earnings, 19 percent of which was attributable to lower educational attainment. Another study, conducted among ME/CFS patients in Kansas, found that ME/CFS resulted in reduced household and labor force productivity that caused individual income losses of approximately $20,000 annually. […] The direct and indirect economic costs of ME/CFS to society are estimated to be approximately over $18 to $24 billion annually.
#152 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Comprehensive Review
https://pmc.ncbi.nlm.nih.gov/articles/PMC6787585/
The prevalence of ME/CFS varies among different studies depending on how this pathological condition is defined, the population surveyed, and the employed methodology. […] ME/CFS is an endemic disorder that affects all racial/ethnic groups and is seen across all socioeconomic strata. […] The median duration of the illness is approximately seven years, a quarter of those with the disease are unemployed or disabled, and the average affected family forgoes approximately $20,000 in annual earnings and wages. […] The prognosis of patients with ME/CFS is variable. […] Death in patients with ME/CFS is usually caused by another co-existing illness, in which cancer and cardiovascular abnormalities are the most common causes of death among this population. […] The primary symptom is the post-exertional fatigue accompanied by various neurological, cardiovascular, respiratory, and gastrointestinal manifestations.
#153 Summary | Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | The National Academies Press
https://nap.nationalacademies.org/read/19012/chapter/2
Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that impose a burden of illness on millions of people in the United States and around the world. Somewhere between 836,000 and 2.5 million Americans are estimated to have these disorders (Jason et al., 1999, 2006b). The cause of ME/CFS remains unknown, although in many cases, symptoms may have been triggered by an infection or other prodromal event, such as immunization, anesthetics, physical trauma, exposure to environmental pollutants, chemicals and heavy metals, and rarely blood transfusions (Carruthers and van de Sande, 2005, p. 1). […] Diagnosing ME/CFS in the clinical setting remains a challenge. Patients often struggle with their illness for years before receiving a diagnosis, and an estimated 84 to 91 percent of patients affected by ME/CFS are not yet diagnosed (Jason et al., 2006b; Solomon and Reeves, 2004).
#154 Myalgic Encephalomyelitis: Causes, Symptoms, and Treatment
https://patient.info/doctor/myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs-pro
Myalgic encephalomyelitis (ME), or chronic fatigue syndrome (CFS), is a complex, chronic medical condition affecting multiple body systems and of unknown cause. It affects everyone differently. […] ME/CFS is not uncommon but the true prevalence is unknown and depends on the criteria used for diagnosis. […] The estimated prevalence is 0.1-0.5%. ME/CFS predominantly affects adults, with a peak age of onset of between 20 and 45 years with a female:male ratio of 3:1. […] Research has shown a higher incidence in socially deprived families. […] Diagnosing ME/CFS remains a challenge. Patients often struggle with their illness for years before an identification is made. […] There is currently no diagnostic test for ME/CFS and it is recognised on clinical grounds alone. […] ME/CFS is a relatively common cause of long-term sickness absence from school. Up to 2% of children have ME/CFS.
#155 Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS) | NHMRCNHMRCNHMRC TaglineNHMRC Tagline
https://www.nhmrc.gov.au/health-advice/me-cfs
ME/CFS is a complex and debilitating condition, characterised by profound fatigue following exertion (not relieved by sleep or rest), unrefreshing sleep and cognitive impairment. […] The aetiology of ME/CFS is not established, although many hypotheses exist. […] Diagnosis is also a challenge in the absence of a diagnostic test and lack of a universally accepted case definition among researchers and clinicians. […] Diagnosis currently relies on elimination of other similar disease patterns and self-reported symptom based criteria. […] NHMRC has never issued or approved guidelines for ME/CFS and there are no current Australian clinical practice guidelines for ME/CFS. […] In August 2024, the Department of Health and Ageing allocated $1.1 million to NHMRC to develop clinical practice guidelines for ME/CFS.
#156 Summary | Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | The National Academies Press
https://nap.nationalacademies.org/read/19012/chapter/2
Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that impose a burden of illness on millions of people in the United States and around the world. Somewhere between 836,000 and 2.5 million Americans are estimated to have these disorders (Jason et al., 1999, 2006b). The cause of ME/CFS remains unknown, although in many cases, symptoms may have been triggered by an infection or other prodromal event, such as immunization, anesthetics, physical trauma, exposure to environmental pollutants, chemicals and heavy metals, and rarely blood transfusions (Carruthers and van de Sande, 2005, p. 1). […] Diagnosing ME/CFS in the clinical setting remains a challenge. Patients often struggle with their illness for years before receiving a diagnosis, and an estimated 84 to 91 percent of patients affected by ME/CFS are not yet diagnosed (Jason et al., 2006b; Solomon and Reeves, 2004).
#157 Myalgic EncephalomyelitisÂ | PM&R KnowledgeNow
https://now.aapmr.org/myalgic-encephalomyelitis/
However, due to general lack of understanding of the disease process or definition and varying clinical guidance in the medical community, many cases of ME/CFS are not diagnosed. Additionally, because the cause of ME/CFS is unknown, there are no targeted strategies for preventing the development of the disease. […] Overall, many patients with ME/CFS continue to have functional impairments chronically. […] A delay in diagnosis has been shown to predict poorer outcomes. […] Education on the disease process and PEM phenomenon are important aspects of helping patients not only feel validated in their experience but also assist in improving quality of life and preventing acute exacerbations.
#158 Controversies related to ME/CFS – Wikipedia
https://en.wikipedia.org/wiki/Controversies_related_to_ME/CFS
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an illness with a long history of controversy. Some professionals within the medical community do not recognize ME/CFS as a genuine condition, nor is there agreement on its prevalence. […] The diagnosis is controversial, and its etiology is still not fully understood. […] ME/CFS suffers from a lack of awareness among clinical professionals. Despite being a relatively common and disabling disease, a large proportion of professionals are either unaware or dismissive of it. This often leads to patient neglect, which happens in clinical, government, bureaucratic, and research settings. […] Despite ample evidence that ME/CFS is an organic disease, many clinicians do not recognise it as genuine or underestimate its seriousness.
#159 Myalgic encephalomyelitis/chronic fatigue syndrome – Wikipedia
https://en.wikipedia.org/wiki/Myalgic_encephalomyelitis/chronic_fatigue_syndrome
People with ME/CFS often face stigma in healthcare settings, and care is complicated by controversies around the cause and treatments of the illness. […] Historically, research funding for ME/CFS has been far below that of diseases with comparable impact. […] Reported prevalence rates vary widely depending on how ME/CFS is defined and diagnosed. […] Overall, around one in 150 people have ME/CFS. […] In England and Wales, over 250,000 people are estimated to be affected. […] It is likely that numbers have increased as a large share of people with long COVID meet the diagnostic criteria of ME/CFS. […] A 2021-2022 CDC survey found that 1.3% of adults in the United States, or 3.3 million, had ME/CFS. […] Women are diagnosed with ME/CFS about 1.5 to four times more often than men. […] The incidence rate (the onset of ME/CFS) has two peaks, one at 10-19 and another at 30-39 years, and the prevalence is highest in middle age.
#160 Prevalence and characteristics of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in Poland: a cross-sectional study | BMJ Open
https://bmjopen.bmj.com/content/9/3/e023955
Our study has confirmed that fatigue is a common and under-recognised symptom affecting the Polish population. It impacts on quality of life and is associated with a range of other symptoms that have been previously recognised in other cohort studies. Despite this, there are no clinical services for fatigue or CFS/ME in Poland and it is poorly understood and infrequently diagnosed.
#161 Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) | Journal of Translational Medicine | Full Text
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02269-0
However, due to the lack of an objective diagnostic tool, an accurate estimation of prevalence has been challenging. […] Accurate prevalence rate and defining factor-related prevalence characteristics are essential for exploring the pathophysiological basis of any disease. […] The average prevalence of CFS/ME based on the 56 prevalence data reported was 1.40-1.57% (95% CI: 0.98-1.82), and the pooled prevalence was 0.39% (5370 CFS/ME patients of 1387,787 participants). […] The meta-analysis yielded an estimate of 0.68% (95% CI: 0.48-0.97) with high heterogeneity I2=99.4%. […] Regarding gender-related differences, 24 data (from 21 studies that included information about gender) indicated an approximately 2.0-fold preponderance of females of 2.24-2.59% vs. 1.11-1.05% for the total population and 2.83 vs. 1.39% for the general population.
#162 Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care | BMC Medicine | Full Text
https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-9-91
Annual incident risks also varied among and within the three regions, with an overall risk of 0.15. […] Despite the lower disease frequency we found compared to some other studies, the consequences for health and social care are still considerable, given the disabling nature of ME/CFS and the high economic impact for patients, families and the wider society. […] Our study yielded a minimum prevalence in primary care of 0.2% and a minimum incidence risk of 0.015%. […] However, it is important to recognize that frequency estimates vary according to how disease status or caseness is defined, and that the true burden of chronically fatiguing conditions is far higher, with the health needs for those with non-ME/CFS chronic fatigue also requiring attention.
#163 Overview | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE
https://www.nice.org.uk/guidance/ng206
This guideline covers diagnosing and managing myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) in children, young people and adults. It aims to improve awareness and understanding about ME/CFS and when to suspect it, so that people are diagnosed earlier. It includes recommendations on diagnosis, assessment and care planning, safeguarding, access to care and managing ME/CFS and its symptoms. […] This guideline includes recommendations on: […] suspecting ME/CFS and diagnosis […] managing ME/CFS […] symptom management […] care for people with severe or very severe ME/CFS.
#164 Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS) | NHMRCNHMRCNHMRC TaglineNHMRC Tagline
https://www.nhmrc.gov.au/health-advice/me-cfs
ME/CFS is a complex and debilitating condition, characterised by profound fatigue following exertion (not relieved by sleep or rest), unrefreshing sleep and cognitive impairment. […] The aetiology of ME/CFS is not established, although many hypotheses exist. […] Diagnosis is also a challenge in the absence of a diagnostic test and lack of a universally accepted case definition among researchers and clinicians. […] Diagnosis currently relies on elimination of other similar disease patterns and self-reported symptom based criteria. […] NHMRC has never issued or approved guidelines for ME/CFS and there are no current Australian clinical practice guidelines for ME/CFS. […] In August 2024, the Department of Health and Ageing allocated $1.1 million to NHMRC to develop clinical practice guidelines for ME/CFS.
#165 Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS) | NHMRCNHMRCNHMRC TaglineNHMRC Tagline
https://www.nhmrc.gov.au/health-advice/me-cfs
The goal of these guidelines is to improve diagnosis, treatment and care of patients living with ME/CFS. […] Johnston, S, Staines, D, Marshall-Gradisnik, S, 2016. 'Epidemiological characteristics of chronic fatigue syndrome/ Myalgic encephalomyelitis in Australian patients’, Clinical Epidemiology, vol. 8 pp. 97-107.
#166 Systematic Review of the Epidemiological Burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology – American ME and CFS Society
https://ammes.org/2020/06/02/systematic-review-of-the-epidemiological-burden-of-myalgic-encephalomyelitis-chronic-fatigue-syndrome-across-europe-current-evidence-and-euromene-research-recommendations-for-epidemiology/
This review aimed at determining the prevalence and incidence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in Europe. […] Prevalence ranged from 0.1% to 2.2%. […] In conclusion, studies on the prevalence and incidence of ME/CFS in Europe were scarce. Our findings point to the pressing need for well-designed and statistically powered epidemiological studies. […] EUROMENE recommends that future research is better conducted in the community, reviewing the clinical history of potential cases, obtaining additional objective information (when needed) and using adequate ME/CFS case definitions; namely, the Centers for Disease Control Prevention1994, Canadian Consensus Criteria, or Institute of Medicine criteria.
#167 LSHTM LSHTM Research Online
https://researchonline.lshtm.ac.uk/id/eprint/4660411/
This review aimed at determining the prevalence and incidence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in Europe. […] Prevalence ranged from 0.1% to 2.2%. […] In conclusion, studies on the prevalence and incidence of ME/CFS in Europe were scarce. Our findings point to the pressing need for well-designed and statistically powered epidemiological studies. […] EUROMENE recommends that future research is better conducted in the community, reviewing the clinical history of potential cases, obtaining additional objective information (when needed) and using adequate ME/CFS case definitions; namely, the Centers for Disease Control Prevention-1994, Canadian Consensus Criteria, or Institute of Medicine criteria.
#168 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
New cases of ME/CFS have been in children as young as eight and adults in their eighties. […] In terms of incidence, a study in Norway found two age peaks, one between 10 and 19 years and a second peak between 30 and 39 years. […] In terms of prevalence, Jason found that individuals in the 40- to 49-year-old age range exhibited the highest prevalence rates of chronic fatigue syndrome (CFS). […] In 1999, a community-based study by Dr Leonard Jason, et al, performed in the Chicago area found that individuals who identified as people of color exhibited higher rates of CFS than whites, with Latino participants demonstrating the highest CFS prevalence. […] The prevalence of CFS was highest among skilled workers and lowest among professionals. […] People with ME/CFS are more disabled and socially marginalized than for most other chronic illnesses.
#169 Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | Jason | Reviews in Health Care
https://journals.seedmedicalpublishers.com/index.php/rhc/article/view/280/377
A major limitation of this study and a comparable study in Australia was that the samples were obtained through physician referral; therefore, members of the community that do not or cannot access medical care for their symptoms were not included. […] The pediatric case definition for ME/CFS also diagnoses children and adolescents with subtype variations of ME/CFS for those who experience idiopathic chronic fatigue. […] Given the lack of effective treatments available, the prognosis for children and adolescents with ME/CFS tends to be poor. […] A lack of rigorous prevalence studies in this area limits the validity of current prevalence estimates; a pediatric case definition has been demonstrated to accurately distinguish between children with ME/CFS and controls; prognosis for children with ME/CFS is poor, and while health may improve, returning to pre-morbid functioning is rare. […] Future studies should aim to establish the prevalence rate of pediatric ME/CFS using a community-based sample, rather than relying on physician referral.
#170 COVID-19 May Be a Trigger for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | University at Albany
https://www.albany.edu/cihs/news/2022-covid-19-may-be-trigger-myalgic-encephalomyelitischronic-fatigue-syndrome
UAlbany researcher Roxana Moslehi from the Department of Epidemiology and Biostatistics is conducting important investigations on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to better understand the illness, including its potential connection to cancer, auto-immune disease, and long-haul COVID-19. […] Research suggests that COVID-19 may be a trigger for ME/CFS. […] It is estimated that in the wake of the COVID-19 pandemic, more than 10 million new ME/CFS cases may be triggered around the world, Moslehi explains. […] The study found that those with ME/CFS were five times more likely to have a family history of auto-immune diseases than the control group. […] Our multidimensional analysis of pedigree, epidemiologic, and molecular data not only provides the most objective evidence to date that ME/CFS may be an auto-immune disease it provides etiologic clues and leads for prevention says Moslehi. […] The ultimate goal is to conduct an integrative analysis of multi-omics (genomics, proteomics, transcriptomics) data to gain deeper insight into the biologic mechanisms of ME/CFS and identify druggable targets for ME/CFS therapy, she says.
#171 A Conversation about Myalgic Encephalomyelitis with Dr. Nina Muirhead – CIHR
https://cihr-irsc.gc.ca/e/52474.html
The current and future research on ME is exciting. We are getting close to finding biomarkers. The global pandemic has brought the world closerwere sharing big data, artificial intelligence is growing exponentially, we have improved imaging and neuroimaging, plus more information on epidemiology. […] ME is a devastating, chronic, complex, multi-system, heterogeneous disease. […] There is a crash or significant flaring of symptoms, called post exertional malaise (PEM), following physical or cognitive exertion. Research has shown that in this illness, exercise and activity-based programs, can make patients much worse, rather than helping. […] Early diagnosis, resting/pacing, symptom management and disability support can reduce morbidity.
#172 COVID-19 May Be a Trigger for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | University at Albany
https://www.albany.edu/cihs/news/2022-covid-19-may-be-trigger-myalgic-encephalomyelitischronic-fatigue-syndrome
UAlbany researcher Roxana Moslehi from the Department of Epidemiology and Biostatistics is conducting important investigations on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to better understand the illness, including its potential connection to cancer, auto-immune disease, and long-haul COVID-19. […] Research suggests that COVID-19 may be a trigger for ME/CFS. […] It is estimated that in the wake of the COVID-19 pandemic, more than 10 million new ME/CFS cases may be triggered around the world, Moslehi explains. […] The study found that those with ME/CFS were five times more likely to have a family history of auto-immune diseases than the control group. […] Our multidimensional analysis of pedigree, epidemiologic, and molecular data not only provides the most objective evidence to date that ME/CFS may be an auto-immune disease it provides etiologic clues and leads for prevention says Moslehi. […] The ultimate goal is to conduct an integrative analysis of multi-omics (genomics, proteomics, transcriptomics) data to gain deeper insight into the biologic mechanisms of ME/CFS and identify druggable targets for ME/CFS therapy, she says.
#173 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)and Long COVID | ANU National Centre for Epidemiology and Population Health
https://nceph.anu.edu.au/research/research-projects/myalgic-encephalomyelitischronic-fatigue-syndrome-mecfsand-long-covid
The investigation of diverse clinical, biological and social data (including pathology, and at times obtained directly via volunteer studies) to inform and improve clinical practice for the diagnosis and monitoring of ME/CFS and long COVID patients. […] This includes research on potential biomarkers and/or biomarker patterns for diagnosis/monitoring, the development of simple diagnostic guidelines to assist community GPs with frontline assessment of patients, along with understanding of the impacts of these conditions on individual mental health, as well as the societal implications of workforce participation and caring roles within communities. Interests in infection and immune response are included for this project.
#174 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Comprehensive Review
https://pmc.ncbi.nlm.nih.gov/articles/PMC6787585/
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating chronic disease of unknown aetiology that is recognized by the World Health Organization (WHO) and the United States Center for Disease Control and Prevention (US CDC) as a disorder of the brain. […] The estimated prevalence is estimated at 0.10.5%. […] In a recent review of the ME/CFS literature reported by The Institute of Medicine (IOM) of the United States (US), it was estimated that between 836,000 and 2.5 million Americans suffer from ME/CFS, causing an annual financial cost that ranges between 1724 billion (USD) dollars per year. […] ME/CFS constitutes a particular enigmatic, debilitating and costly significant public health problem. […] The disease affects all ages, races and socioeconomic groups and some studies showed that approximately three to four times as many women as men present the symptoms.
#175 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) | Symptoms, Causes, & Treatment | Britannica
https://www.britannica.com/science/myalgic-encephalomyelitis-chronic-fatigue-syndrome
myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), condition characterized by persistent debilitating fatigue that has no identifiable cause. ME/CFS is a remarkably complex illness and remains incompletely understood. […] Worldwide, an estimated 0.2 to 2.8 percent of people are affected by ME/CFS. However, prevalence rates likely are much higher because an estimated 90 percent of persons living with ME/CFS may be undiagnosed. […] Moreover, although anyone can be affected by ME/CFS, it is most common in adults between ages 40 and 60 and tends to affect women more often than men; this age range and gender difference presents significant challenges, particularly in differentiating ME/CFS from symptoms of early menopause. […] Diagnosis of ME/CFS is based primarily on two criteria: severe fatigue lasting six months or longer and the coexistence of any four other characteristic symptoms, which are mild fever, sore throat, tender lymph nodes, muscle pain and weakness, joint pain, headache, sleep disorders, confusion, and memory loss. […] There is no cure for ME/CFS. Patients can be treated with drugs to control their most severe symptoms; for example, some patients are treated with antihistamines to control allergy-like symptoms or with sedatives to treat sleep disorders.
#176 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Comprehensive Review
https://pmc.ncbi.nlm.nih.gov/articles/PMC6787585/
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating chronic disease of unknown aetiology that is recognized by the World Health Organization (WHO) and the United States Center for Disease Control and Prevention (US CDC) as a disorder of the brain. […] The estimated prevalence is estimated at 0.10.5%. […] In a recent review of the ME/CFS literature reported by The Institute of Medicine (IOM) of the United States (US), it was estimated that between 836,000 and 2.5 million Americans suffer from ME/CFS, causing an annual financial cost that ranges between 1724 billion (USD) dollars per year. […] ME/CFS constitutes a particular enigmatic, debilitating and costly significant public health problem. […] The disease affects all ages, races and socioeconomic groups and some studies showed that approximately three to four times as many women as men present the symptoms.
#177 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
Statistics on the prevalence of myalgic encephalomyelitis and chronic fatigue syndrome vary. The CDC estimates that one million people in the US have ME/CFS and as many as 17-24 million people worldwide have ME/CFS. […] A recent UK biobank study places that estimate at 30 million. […] In 2015, the Institute of Medicine Report estimated there were between 836,000 and 2.5 million ME/CFS patients in the United States. […] 90% of patients are not diagnosed. […] Twenty-five percent of ME/CFS patients have a very severe form of it. […] This 25% of patients are severely ill and are either bed-bound, wheelchair bound, or are housebound or nearly so. […] ME/CFS is more prevalent in women than men, can affect children or adults but is most common in adults between the ages of 30 to 50 years old, or ages 40-60 in the United States.
#178 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
In 72% of causes reported by ME/CFS patients, the onset follows an acute infection, for example a virus or bacterial infection. […] The prevalence rate is projected at 0.2%-0.4% although estimates vary widely due to different definitions and sampling methods used. […] Estimated incidence rates generally, the number of new cases in a single year vary from 0.025% to 0.3% of the population. […] Numerous studies have found the rates of ME/CFS to be substantially higher in adult women than in men, with estimates ranging from 75-85%. […] A higher preponderance of women has also been noted in numerous outbreaks including Los Angeles, Akureyri, Rockville, MD, Royal Free Hospital, and Punta Gorda, Florida. […] In some cases, this was thought to do with the occupational hazard of nursing, but this female-skewed sex ratio was also found in several outbreaks among the general population.
#179 Incidence and prevalence of post-COVID-19 myalgic encephalomyelitis: A report from the observational RECOVER-Adult study | RECOVER COVID Initiative
https://recovercovid.org/publications/incidence-and-prevalence-post-covid-19-myalgic-encephalomyelitis-report-observational
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may occur after infection. […] To determine the incidence and prevalence of post-COVID-19 ME/CFS among adults enrolled in the Researching COVID to Enhance Recovery (RECOVER-Adult) study. […] The incidence rate of ME/CFS in participants followed from time of SARS-CoV-2 infection was 2.66 (95% CI 2.63-2.70) per 100 person-years while the rate in matched uninfected participants was 0.93 (95% CI 0.91-10.95) per 100 person-years: a hazard ratio of 4.93 (95% CI 3.62-6.71). […] The proportion of all RECOVER-Adult participants that met criteria for ME/CFS following SARS-CoV-2 infection was 4.5% (531 of 11,785) compared to 0.6% (9 of 1439) in uninfected participants. […] ME/CFS is a diagnosable sequela that develops at an increased rate following SARS-CoV-2 infection. […] These findings highlight the need for healthcare professionals to be aware that ME/CFS can develop after a COVID infection.
#180 Epidemiology of myalgic encephalomyelitis and chronic fatigue syndrome – MEpedia
https://me-pedia.org/wiki/Epidemiology_of_myalgic_encephalomyelitis_and_chronic_fatigue_syndrome
Around 25 percent of people with ME/CFS will have a mild form and are able to go to school or work either part-time or full-time, while reducing other activities. […] About 50 percent will have a moderate to severe form of ME/CFS and are unlikely to able to study or work. […] Another 25 percent will experience severe ME/CFS and have to stay at home or in bed. […] According to the CDC, up to the 75% of United States patients with ME/CFS are too ill to work, with rates of between 50 and 75% too ill to work worldwide. […] A study in France by Ghali et al 2020 looked at factors associated with increased severity of post-exertional malaise (PEM), the hallmark symptom, and found that onset at age 32 or later, a gastrointestinal illness triggering ME/CFS and recurrent infections during the illness all increased risk of having more severe PEM.
#181 Summary | Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | The National Academies Press
https://nap.nationalacademies.org/read/19012/chapter/2
ME/CFS can cause significant impairment and disability that have negative economic consequences at both the individual and the societal level. At least one-quarter of ME/CFS patients are house- or bedbound at some point in their lives (Marshall et al., 2011; NIH, 2011; Shepherd and Chaudhuri, 2001). The direct and indirect economic costs of ME/CFS to society have been estimated at $17 to $24 billion annually (Jason et al., 2008), $9.1 billion of which has been attributed to lost household and labor force productivity (Reynolds et al., 2004). […] The primary message of this report is that ME/CFS is a serious, chronic, complex, and systemic disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is real. It is not appropriate to dismiss these patients by saying, I am chronically fatigued, too.
#182 Summary | Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | The National Academies Press
https://nap.nationalacademies.org/read/19012/chapter/2
Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that impose a burden of illness on millions of people in the United States and around the world. Somewhere between 836,000 and 2.5 million Americans are estimated to have these disorders (Jason et al., 1999, 2006b). The cause of ME/CFS remains unknown, although in many cases, symptoms may have been triggered by an infection or other prodromal event, such as immunization, anesthetics, physical trauma, exposure to environmental pollutants, chemicals and heavy metals, and rarely blood transfusions (Carruthers and van de Sande, 2005, p. 1). […] Diagnosing ME/CFS in the clinical setting remains a challenge. Patients often struggle with their illness for years before receiving a diagnosis, and an estimated 84 to 91 percent of patients affected by ME/CFS are not yet diagnosed (Jason et al., 2006b; Solomon and Reeves, 2004).
#183 Systematic Review of the Epidemiological Burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Across Europe: Current Evidence and EUROMENE Research Recommendations for Epidemiology – American ME and CFS Society
https://ammes.org/2020/06/02/systematic-review-of-the-epidemiological-burden-of-myalgic-encephalomyelitis-chronic-fatigue-syndrome-across-europe-current-evidence-and-euromene-research-recommendations-for-epidemiology/
This review aimed at determining the prevalence and incidence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in Europe. […] Prevalence ranged from 0.1% to 2.2%. […] In conclusion, studies on the prevalence and incidence of ME/CFS in Europe were scarce. Our findings point to the pressing need for well-designed and statistically powered epidemiological studies. […] EUROMENE recommends that future research is better conducted in the community, reviewing the clinical history of potential cases, obtaining additional objective information (when needed) and using adequate ME/CFS case definitions; namely, the Centers for Disease Control Prevention1994, Canadian Consensus Criteria, or Institute of Medicine criteria.
#184 LSHTM LSHTM Research Online
https://researchonline.lshtm.ac.uk/id/eprint/4660411/
This review aimed at determining the prevalence and incidence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in Europe. […] Prevalence ranged from 0.1% to 2.2%. […] In conclusion, studies on the prevalence and incidence of ME/CFS in Europe were scarce. Our findings point to the pressing need for well-designed and statistically powered epidemiological studies. […] EUROMENE recommends that future research is better conducted in the community, reviewing the clinical history of potential cases, obtaining additional objective information (when needed) and using adequate ME/CFS case definitions; namely, the Centers for Disease Control Prevention-1994, Canadian Consensus Criteria, or Institute of Medicine criteria.