Mialgiczne zapalenie mózgu i rdzenia/zespół przewlekłego zmęczenia
Objawy
Mialgiczne zapalenie mózgu i rdzenia/zespół przewlekłego zmęczenia (ME/CFS) to przewlekła, wieloukładowa choroba charakteryzująca się skrajnym zmęczeniem utrzymującym się co najmniej 6 miesięcy u dorosłych, które nie ustępuje po odpoczynku, oraz kluczowym objawem post-exertional malaise (PEM) – pogorszeniem objawów po wysiłku fizycznym, poznawczym lub emocjonalnym, z opóźnionym początkiem (12-48 godzin) i długotrwałym czasem regeneracji. Diagnoza opiera się na kryteriach National Academy of Medicine, wymagających obecności zmęczenia, PEM, nieodświeżającego snu oraz co najmniej jednego z objawów: zaburzeń poznawczych lub nietolerancji ortostatycznej. ME/CFS manifestuje się także bólami mięśniowo-stawowymi, objawami grypopodobnymi, zaburzeniami autonomicznymi i nadwrażliwościami sensorycznymi. Przebieg choroby jest zmienny, z fluktuacjami, remisjami i nawrotami, a około 25% pacjentów doświadcza ciężkiej postaci z koniecznością całodobowej opieki. Rokowanie jest niepewne, całkowite wyleczenie występuje u mniej niż 10% chorych, a dzieci i młodzież mają lepsze prognozy niż dorośli.
- Mialgiczne zapalenie mózgu i rdzenia/zespół przewlekłego zmęczenia (ME/CFS) – objawy i przebieg
- Główne (podstawowe) objawy ME/CFS
- Dodatkowe objawy ME/CFS
- Złe samopoczucie po wysiłku (PEM) – kluczowy objaw ME/CFS
- Stopnie nasilenia ME/CFS
- Przebieg choroby ME/CFS
- Wpływ ME/CFS na codzienne funkcjonowanie
- Ograniczenia w aktywności fizycznej
- Wpływ na edukację i pracę
- Wpływ na jakość życia
- Choroby współistniejące
- Rozpoznanie i leczenie ME/CFS
- ME/CFS a inne choroby
Mialgiczne zapalenie mózgu i rdzenia/zespół przewlekłego zmęczenia (ME/CFS) – objawy i przebieg
Mialgiczne zapalenie mózgu i rdzenia/zespół przewlekłego zmęczenia (ME/CFS) to poważna, przewlekła i wyniszczająca choroba, która wpływa na wiele układów organizmu, w tym układ nerwowy, immunologiczny i autonomiczny. Charakteryzuje się głębokim zmęczeniem oraz szerokim zakresem innych objawów, które znacząco ograniczają zdolność pacjenta do wykonywania codziennych czynności.123
Główne (podstawowe) objawy ME/CFS
Do postawienia diagnozy ME/CFS wymagana jest obecność kilku kluczowych objawów. Według kryteriów diagnostycznych opracowanych przez National Academy of Medicine (dawniej Institute of Medicine), należą do nich:123
- Skrajne zmęczenie – utrzymujące się co najmniej 6 miesięcy (u dorosłych) lub 3 miesiące (u dzieci), które znacząco ogranicza zdolność do wykonywania aktywności na poziomie sprzed choroby. Zmęczenie to nie ustępuje po odpoczynku i nie jest wynikiem nadmiernego wysiłku.12
- Złe samopoczucie po wysiłku (post-exertional malaise, PEM) – pogorszenie objawów po wysiłku fizycznym, poznawczym lub emocjonalnym, który wcześniej nie stanowił problemu. Jest to charakterystyczny objaw ME/CFS, który odróżnia to schorzenie od innych chorób.123
- Nieodświeżający sen – mimo pełnej nocy snu pacjenci nie czują się wypoczęci; mogą mieć problemy z zasypianiem lub utrzymaniem snu.12
Dodatkowo, do postawienia diagnozy konieczna jest obecność co najmniej jednego z następujących objawów:12
- Zaburzenia poznawcze (tzw. „mgła mózgowa”) – problemy z pamięcią, koncentracją, trudności w szybkim myśleniu i przetwarzaniu informacji.12
- Nietolerancja ortostatyczna – objawy pogarszają się podczas pozycji stojącej lub siedzącej i poprawiają się w pozycji leżącej. Może objawiać się zawrotami głowy, osłabieniem, zaburzeniami widzenia.12
Dodatkowe objawy ME/CFS
Poza objawami podstawowymi, pacjenci z ME/CFS mogą doświadczać szeregu innych dolegliwości:123
- Ból – mięśniowy i/lub stawowy, często bez widocznego zapalenia, bóle głowy o nowym typie, wzorcu lub nasileniu12
- Objawy grypopodobne – ból gardła, tkliwe węzły chłonne szyjne lub pachowe12
- Problemy żołądkowo-jelitowe – nudności, wzdęcia, zaparcia, biegunka, zespół jelita drażliwego12
- Zaburzenia autonomiczne – zmiany ciśnienia krwi, kołatanie serca, przyspieszone tętno, duszność po wysiłku lub przy wstawaniu1
- Nadwrażliwość na światło, dźwięk, zapachy, pokarmy, leki i substancje chemiczne12
- Zaburzenia termoregulacji – znaczące zmiany wagi (wzrost lub spadek), pocenie się, dreszcze, złe znoszenie zmian temperatury1
Złe samopoczucie po wysiłku (PEM) – kluczowy objaw ME/CFS
Post-exertional malaise (PEM) to charakterystyczny objaw ME/CFS i jest uważany za oznakę rozpoznawczą tej choroby. PEM znacząco różni się od normalnego zmęczenia doświadczanego przez zdrowe osoby:123
- Pogorszeniem objawów po aktywności fizycznej, umysłowej lub emocjonalnej, która wcześniej nie stanowiła problemu1
- Opóźnionym początkiem – objawy mogą pojawić się natychmiast lub z opóźnieniem 12-48 godzin po wysiłku12
- Nieproporcjonalnym nasileniem objawów w stosunku do wykonanej aktywności1
- Przedłużonym czasem regeneracji – powrót do stanu sprzed wysiłku może trwać dni, tygodnie, a nawet miesiące12
- Brakiem poprawy po odpoczynku1
PEM może być wywołany przez codzienne aktywności, takie jak prysznic, gotowanie, czytanie, a nawet rozmowa. U pacjentów z ciężką postacią ME/CFS nawet szczotkowanie zębów czy przeczytanie jednego zdania może wyzwolić PEM.12
Stopnie nasilenia ME/CFS
ME/CFS może występować w różnym nasileniu i wpływać na pacjentów w różny sposób. Stopień ciężkości choroby dzieli się zazwyczaj na:123
- Łagodny – pacjenci mogą opiekować się sobą i wykonywać niektóre lekkie prace domowe, ale mogą mieć trudności z poruszaniem się. Mogą uczęszczać do szkoły lub pracować na pełny lub niepełny etat, ale często kosztem rezygnacji z innych aktywności.12
- Umiarkowany – pacjenci mają ograniczoną mobilność i mają trudności we wszystkich czynnościach życia codziennego. Mogą doświadczać wzlotów i upadków w nasileniu objawów.12
- Ciężki – pacjenci nie są w stanie wykonywać żadnych czynności samodzielnie lub mogą wykonywać tylko minimalne codzienne zadania. Około 25% osób z ME/CFS jest w pewnym momencie choroby przykutych do łóżka lub domu.123
- Bardzo ciężki – pacjenci pozostają przez cały dzień w łóżku i są całkowicie zależni od opieki innych osób.12
Przebieg choroby ME/CFS
Początek choroby
ME/CFS może rozpocząć się na różne sposoby:12
- Nagły początek – objawy pojawiają się gwałtownie, często po infekcji wirusowej, bakteryjnej lub pasożytniczej. U 64-80% pacjentów choroba rozpoczyna się po infekcji.123
- Stopniowy początek – objawy rozwijają się powoli w ciągu tygodni lub miesięcy. Jest to częstsze u młodszych dzieci.12
Czynniki wyzwalające ME/CFS mogą obejmować:123
- Infekcje (najczęściej wirusowe, jak wirus Epsteina-Barr czy mononukleoza zakaźna)
- Szczepienia
- Znaczący stres fizyczny lub emocjonalny
- Nadmierny wysiłek
- Chroniczny niedobór snu
- Narażenie na toksyny
- Nietypowa reakcja na leki
W niektórych przypadkach nie można zidentyfikować czynnika wyzwalającego.1
Przebieg i progresja choroby
ME/CFS charakteryzuje się nieprzewidywalnym przebiegiem, który może trwać latami. Choroba może przybierać różne wzorce:123
- Fluktuacje objawów – objawy mogą zmieniać się w ciągu dnia, z dnia na dzień lub przez dłuższe okresy. Pacjenci często zgłaszają, że najtrudniej jest im funkcjonować rano, a później w ciągu dnia następuje pewna poprawa.123
- Remisje i nawroty – okresy względnej poprawy mogą być przerywane zaostrzeniami („crashes”) wywołanymi przez infekcje, nadmierny wysiłek lub brak regeneracji po epizodzie PEM.123
- Stabilny przebieg – u niektórych pacjentów objawy pozostają względnie stałe, bez wyraźnych okresów poprawy.1
- Stopniowe pogorszenie – u części pacjentów z czasem następuje pogorszenie objawów.1
Badania wykazały, że w ciągu pierwszych 5 lat około 60% młodych pacjentów zgłasza poprawę, a do 12 lat – 88%. Jednak około jedna trzecia tych „wyleczonych” pacjentów przyznaje, że musiała zmodyfikować swoje aktywności, aby utrzymać dobre samopoczucie. Inne badania pokazują, że 20-48% pacjentów nie wykazuje poprawy lub doświadcza pogorszenia objawów w okresach obserwacji od 2 do 13 lat.1
Ewolucja objawów w czasie
Z czasem objawy ME/CFS mogą się zmieniać:1
- Częstość występowania 12 najczęstszych objawów z czasem zmniejsza się, przy czym zmęczenie, nieodświeżający sen, złe samopoczucie po wysiłku i objawy grypopodobne wykazują największy spadek (o 20-25%).1
- Natomiast objawy poznawcze wykazują najmniejszą zmianę częstości występowania i z czasem mogą stawać się bardziej dominujące.1
Dla wielu pacjentów objawy nigdy nie ustępują całkowicie, często wahają się pod względem nasilenia, ale zawsze są obecne. Według jednego badania, 47% pacjentów nie było w stanie pracować, a tylko 4% odczuwało stałą poprawę stanu zdrowia, podczas gdy większość (59%) opisywała przebieg choroby jako zmienny.1
Rokowania w ME/CFS
Rokowania w ME/CFS są trudne do przewidzenia i mogą się znacznie różnić w zależności od pacjenta:123
- Całkowite wyleczenie jest rzadkie i szacowane na mniej niż 10% pacjentów.1
- Większość pacjentów z ME/CFS pozostaje chorych przez dziesięciolecia, choć niektórzy mogą doświadczyć częściowej poprawy.1
- Wczesna diagnoza i odpowiednie leczenie mogą poprawić rokowanie.12
- Dzieci i młodzież mają lepsze rokowania niż dorośli.1
Czynniki takie jak ciężkość objawów czy wiek w momencie zachorowania nie okazały się wiarygodnymi predyktorami długoterminowych wyników.1
Wpływ ME/CFS na codzienne funkcjonowanie
ME/CFS może mieć głęboki wpływ na wszystkie aspekty życia pacjenta:12
Ograniczenia w aktywności fizycznej
ME/CFS znacząco ogranicza zdolność do wykonywania codziennych czynności:12
- Nawet podstawowe czynności jak mycie się, ubieranie czy przygotowywanie posiłków mogą być wyczerpujące.1
- Około 75% pacjentów nie jest w stanie pracować w pełnym wymiarze godzin.1
- Około 25% pacjentów jest w pewnym momencie choroby przykutych do łóżka lub domu.12
- Najbardziej dotknięci pacjenci wymagają całodobowej opieki.1
Wpływ na edukację i pracę
ME/CFS ma znaczący wpływ na życie zawodowe i edukacyjne:12
- Większość dorosłych z ME/CFS nie jest w stanie pracować w pełnym wymiarze godzin lub w ogóle.1
- Dzieci i młodzież mogą nie być w stanie uczęszczać do szkoły lub wymagają znacznej pomocy w nauce.1
- ME/CFS jest najczęstszą przyczyną długotrwałej nieobecności w szkole.1
- Problemy poznawcze mogą być tak samo upośledzające jak objawy fizyczne, powodując trudności w pracy, szkole i interakcjach społecznych.1
Wpływ na jakość życia
ME/CFS ma znaczący wpływ na ogólną jakość życia:12
- Pacjenci z ME/CFS zgłaszają niższą jakość życia niż osoby z innymi przewlekłymi chorobami, takimi jak cukrzyca, padaczka czy mukowiscydoza.1
- Poziom upośledzenia funkcjonalnego u osób cierpiących na ME/CFS jest porównywalny z stwardnieniem rozsianym, AIDS, schyłkową niewydolnością nerek i przewlekłą obturacyjną chorobą płuc.1
- Nieprzewidywalny charakter choroby może prowadzić do izolacji społecznej, stresu emocjonalnego i trudności finansowych.1
Choroby współistniejące
U pacjentów z ME/CFS często występują choroby współistniejące:12
- Według jednego badania, 97% pacjentów cierpiało na co najmniej jedną inną chorobę.1
- Najczęściej diagnozowane schorzenia współistniejące to: zaburzenia lękowe (48%), depresja (43%), fibromialgia (39%), zespół jelita drażliwego (38%) i migreny (37%).1
- Zaburzenia snu, nietolerancja ortostatyczna i fibromialgia często współistnieją z ME/CFS.12
Warto zauważyć, że ME/CFS nie jest zaburzeniem psychologicznym, choć życie z przewlekłą chorobą może prowadzić do problemów ze zdrowiem psychicznym, takich jak lęk czy depresja.12
Rozpoznanie i leczenie ME/CFS
Diagnostyka
Diagnoza ME/CFS opiera się wyłącznie na objawach klinicznych i wykluczeniu innych chorób powodujących przewlekłe zmęczenie:12
- Nie istnieje specyficzny test laboratoryjny potwierdzający ME/CFS.12
- Diagnoza opiera się na obecności kluczowych objawów i wykluczeniu innych schorzeń poprzez badanie fizykalne i testy medyczne.12
- Proces diagnostyczny może być długotrwały, a pacjenci często zmagają się z chorobą przez lata, zanim otrzymają diagnozę.1
Leczenie
Obecnie nie ma leku na ME/CFS ani zatwierdzonych przez FDA terapii specyficznych dla tego schorzenia. Leczenie koncentruje się na łagodzeniu objawów i poprawie jakości życia:123
- Zarządzanie energią (pacing) – strategia polegająca na znalezieniu równowagi między aktywnością a odpoczynkiem, aby uniknąć PEM. Wymaga starannego planowania aktywności i odpoczynku, aby uniknąć wyzwalania objawów.123
- Leczenie farmakologiczne – choć nie ma leków specyficznych dla ME/CFS, niektóre leki mogą pomóc w łagodzeniu konkretnych objawów, takich jak ból, bezsenność czy nietolerancja ortostatyczna. Pacjenci z ME/CFS mogą być wrażliwi na leki, dlatego zaleca się rozpoczynanie od niskich dawek.12
- Terapia poznawczo-behawioralna (CBT) – może pomóc pacjentom w radzeniu sobie z ograniczeniami i niepewnością związaną z chorobą.1
- Wsparcie psychologiczne – może pomóc pacjentom i ich rodzinom radzić sobie z niepewnością i ograniczeniami związanymi z tym schorzeniem.1
Ważne jest, aby podkreślić, że terapia wysiłkowa (GET) nie jest już zalecana dla pacjentów z ME/CFS, ponieważ może prowadzić do pogorszenia objawów.12
ME/CFS a inne choroby
ME/CFS a Long COVID
Istnieje znaczące nakładanie się objawów między ME/CFS a Long COVID:123
- Badania wykazały, że około połowa osób z Long COVID spełnia kryteria diagnostyczne ME/CFS.1
- Identyfikowano wspólne mechanizmy biologiczne i wzorce ekspresji genów w obu schorzeniach.1
- W obu przypadkach kluczowym objawem jest złe samopoczucie po wysiłku (PEM).1
- Niedawne badanie przeprowadzone przez Kaiser Permanente Northern California wykazało, że 14,1% pacjentów z objawami ME/CFS rozwinęło je po COVID-19.1
ME/CFS a fibromialgia
ME/CFS i fibromialgia mają wiele wspólnych objawów, ale istnieją między nimi pewne różnice:12
- Niektórzy badacze uważają, że te dwa schorzenia są różnymi aspektami tej samej choroby ze względu na nakładające się objawy.1
- Jednak według niektórych źródeł, fibromialgia i ME/CFS rzadko współistnieją u tego samego pacjenta.1
- Punkty spustowe, charakterystyczne dla fibromialgii, są nieobecne u pacjentów z ME/CFS.1
ME/CFS to poważna, wieloukładowa choroba, która może znacząco wpłynąć na jakość życia pacjenta. Charakteryzuje się przede wszystkim głębokim zmęczeniem i złym samopoczuciem po wysiłku (PEM), które nie ustępuje po odpoczynku. Choroba ma zmienny przebieg, z okresami poprawy i zaostrzeń, a całkowite wyleczenie jest rzadkie. Wczesna diagnoza i odpowiednie leczenie objawowe mogą poprawić jakość życia pacjentów, choć obecnie nie ma leku na ME/CFS.123
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Materiały źródłowe
- #1 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – Symptoms and causes – Mayo Clinichttps://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complicated disorder. […] It causes extreme fatigue that lasts for at least six months. Symptoms worsen with physical or mental activity but don’t fully improve with rest. […] Symptoms of ME/CFS can vary from person to person, and the severity of symptoms can fluctuate from day to day. In addition to fatigue, symptoms may include: […] Extreme exhaustion after physical or mental exercise. […] Problems with memory or thinking skills. […] Dizziness that worsens with moving from lying down or sitting to standing. […] Muscle or joint pain. […] Unrefreshing sleep. […] Some people with this condition have headaches, sore throats, and tender lymph nodes in the neck or armpits. People with the condition also may become extra sensitive to light, sound, smells, food and medicines.
- #1 Symptoms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | ME/CFS | CDChttps://www.cdc.gov/me-cfs/signs-symptoms/index.html
Myalgic encephalomyelitis/chronic fatigue syndrome symptoms are common in many other illnesses. […] There is no test to confirm ME/CFS. This makes it hard to diagnose. […] Symptoms are unpredictable and may change or come and go over time. […] However, a combination of core symptoms are used to diagnose ME/CFS. […] ME/CFS has five core symptoms. You must have three main ME/CFS symptoms and at least one of the other two symptoms to be diagnosed with ME/CFS. […] People with ME/CFS have a much lower ability to do activities they could do before they got sick. This limitation comes with fatigue and lasts six months or longer. […] People with ME/CFS experience a worsening of their symptoms after any type of activity – physical or mental. […] This is called Post-Exertional Malaise (PEM).
- #1 Symptoms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | ME/CFS | CDChttps://www.cdc.gov/me-cfs/signs-symptoms/index.html
During a crash, people with ME/CFS may have a variety of symptoms. These can include difficulty thinking, problems sleeping, sore throat, headaches, feeling dizzy, or severe tiredness. […] It may take days, weeks, or longer to recover from a crash. […] People with ME/CFS may not feel better or less tired, even after a full night’s sleep. […] Most people with ME/CFS have trouble thinking quickly, remembering things, and paying attention to details. […] People with ME/CFS often report their symptoms get worse when they are standing or sitting upright. This is called orthostatic intolerance. […] Pain is very common in people with ME/CFS. […] The pain people with ME/CFS feel is not caused by an injury. […] ME/CFS is a serious, debilitating illness that makes it hard for people to do activities they could previously do without difficulty.
- #1 Myalgic Encephalomyelitis (https://www.health.ny.gov/diseases/conditions/me-cfs/
The most severely affected people with ME need around the clock care. […] Since the medical community does not have a test to prove that someone has ME, it can be challenging to diagnose and may take some time to do so. […] Adults typically experience worsening post-exertional malaise (PEM), unrefreshing sleep, cognitive problems and/or orthostatic intolerance, in addition to any of the other symptoms in the list above. […] In 2015, the National Academy of Medicine published new diagnostic criteria for ME, which require the presence of the following: substantial impairment in activity that lasts six months or more and is accompanied by fatigue, post-exertional malaise (PEM), unrefreshing sleep, and either cognitive impairment or orthostatic intolerance. […] Although cognitive behavior therapy (CBT) and graded exercise therapy (GET) were once recommended to treat patients with ME, these interventions assume that patients are afraid to exercise and thus become out of shape (deconditioned). […] Currently, there are no FDA-approved treatments specifically for ME. […] People with ME can be sensitive to medications so it is recommended to start at low doses.
- #1https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/symptoms/
There are 4 main symptoms of myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). […] The extreme tiredness (fatigue) associated with ME/CFS does not go away with rest or sleep. This can make it difficult to carry out everyday tasks and activities. […] Most people with ME/CFS describe their fatigue as overwhelming and a different type of tiredness from what they’ve experienced before. […] Many people with ME/CFS also have serious problems with their sleep that do not get better. […] If you have ME/CFS, it’s also common to have problems remembering certain words, names or numbers. […] Symptoms of ME/CFS can get worse after activity (called post-exertional malaise, or PEM). […] Other symptoms of ME/CFS can include muscle or joint pain, headaches, a sore throat or sore glands that are not swollen, flu-like symptoms, feeling dizzy or sick, fast or irregular heartbeats (heart palpitations), muscle twitches or spasms, intolerance to alcohol or certain foods or chemicals, being very sensitive to light, sound, touch, taste and smell, having hot flushes or cold chills if the temperature changes, feeling dizzy, sick or fainting when standing up from a sitting or lying position. […] Most cases of ME/CFS are mild or moderate, but 1 in 4 people have severe symptoms. […] If your symptoms are severe, a specialist should be involved in your treatment. […] There may be times when your symptoms get worse. These periods are known as relapses.
- #1 Chronic fatigue syndrome (CFS) | Better Health Channelhttps://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs
The core symptom of ME/CFS is called post-exertional malaise (PEM), which is an increase in symptoms and reduction in function after minimal physical or mental activity. […] People living with ME/CFS can experience a wide range of debilitating symptoms. They are not just tired. […] Research shows that people with ME/CFS have a different physical response to activity or exercise from other people. This includes abnormal exhaustion after any physical or mental activity that would not have caused problems before developing ME/CFS. […] Common symptoms include: problems with thinking, concentrating, memory loss, vision, clumsiness, muscle twitching or tingling (sometimes called neurocognitive problems), disrupted sleep, pain or aches in the muscles, joints or head, changes in blood pressure, feeling dizzy or pale, palpitations, increased heart rate or shortness of breath with exertion or on standing, allergies or sensitivities to light, smells, touch, sound, foods, chemicals and medications, gastrointestinal changes such as nausea, bloating, constipation, diarrhoea, urinary problems, sore throat, tender lymph nodes and a flu-like feeling, marked weight change extreme loss or gain, inability to cope with temperature changes.
- #1 Living with ME/CFS | Ausmedhttps://www.ausmed.com/learn/articles/chronic-fatigue-syndrome
The cause of ME/CFS is not yet understood, and there is no cure (Healthdirect 2024). […] ME/CFS is more than just chronic fatigue, which is a symptom associated with many conditions but not an illness itself (Emerge Australia n.d.a). […] In reality, ME/CFS is a multi-systemic illness that can involve a variety of symptoms, including: Persistent and severe fatigue, Sleep issues, Widespread muscle, joint and head pain, Changes in blood pressure, Heart palpitations, rapid heart rate or shortness of breath caused by exertion or standing up, Neurocognitive issues (e.g. confusion, concentration or memory problems, clumsiness, muscle twitching or tingling), Noise or light sensitivity, Difficulty being upright, Gastrointestinal issues (e.g. nausea, abdominal pain, bloating, irritable bowel syndrome, constipation, diarrhoea), Urinary issues, Sore throat and tender lymph nodes, Flu-like symptoms, Extreme weight gain or loss, Temperature regulation issues, Food, medicine or chemical sensitivities (Emerge Australia n.d.a; Better Health Channel 2022; Healthdirect 2024).
- #1 What is ME? – Action for MEVisit our FacebookVisit our InstagramVisit our LinkedInVisit our YouTube channelsearchchevron-rightchevron-downlinkedinfacebookpinterestyoutubersstwitterinstagramfacebook-blankrss-blanklinkedin-blankpinterestyoutubetwitterinstaghttps://www.actionforme.org.uk/get-information/what-is-me/what-does-me-feel-like/
Myalgic Encephalomyelitis (ME), sometimes referred to and diagnosed as Chronic Fatigue Syndrome (CFS), is a chronic, fluctuating disease, causing symptoms such as post-exertional malaise (PEM), sleep problems, problems with thinking and memory (brain fog), pain and crushing fatigue. […] The hallmark symptom of ME is post-exertional (PEM) malaise. This means that simple physical or mental activities, or combinations of activities, can leave people with ME feeling utterly debilitated. […] While there are key symptoms that must be present for an ME diagnosis, not everyone with ME experiences the same set of symptoms and the illness can vary enormously, including how long symptoms last. […] One in four people with ME are so severely affected that they are house or bedbound. […] Around one in four people with ME can become severely affected by the condition. They are often left house or bedbound and accessing appropriate care and support can be challenging.
- #1 Chronic fatigue syndrome: Symptoms, treatment, and causeshttps://www.medicalnewstoday.com/articles/184802
Chronic fatigue syndrome also known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) OR systemic exertional intolerance disease (SEID) is a serious, chronic illness that can cause pain and extreme fatigue. […] The symptoms of ME/CFS can vary widely, but there are three core symptoms: […] A person with ME/CFS experiences fatigue that interferes with their ability to carry out daily tasks. […] The fatigue: is severe, does not improve with rest, is not due to activity, was not previously present. […] For a diagnosis of ME/CFS, this fatigue and the resulting decrease in activity levels must last 6 months or longer. […] A person with post-exertional malaise (PEM) will experience a crash after physical or mental exertion. […] During times of PEM, they may have new or worsening symptoms that include: difficulty thinking, difficulty sleeping, a sore throat, headaches, dizziness, tiredness.
- #1 Health Library | The University of Vermont Health Networkhttps://www.uvmhealth.org/medcenter/wellness-resources/health-library/hw32907
ME/CFS symptoms usually start suddenly. But for some people, they develop slowly over weeks or months. Symptoms can change in a day, and from day to day. And how severe the symptoms are can differ from person to person. […] The core symptoms are: Extreme physical fatigue, mental fatigue, or both. Fatigue can be constant, or it can come and go. It’s not relieved by rest. This fatigue also is so severe that it interferes with your work, play, and social activities. Worsening of symptoms after activity (post-exertional malaise). You may feel ill or weak or that your ME/CFS symptoms are worse after physical or mental activity. Even daily activities like showering, cooking, and reading can trigger symptoms. Often there is a delay of 24 hours before it starts. It can take days, weeks, or more to feel better. Sleep problems. You may have trouble sleeping. Or you may wake up feeling tired or not rested. Problems with thinking (cognitive impairment). You may have problems concentrating, remembering, or thinking of the right word. Feeling dizzy or faint while in an upright position (orthostatic intolerance). You may feel dizzy, weak, exhausted, confused, or in more pain when you have been standing or sitting upright for a long time. These symptoms usually improve or go away when you lie down. […] Most people with ME/CFS find that their symptoms greatly reduce their ability to do the things they want and need to do. But ME/CFS is different for everyone. Symptoms are worse for some people than for others.
- #1 Chronic fatigue syndrome: Symptoms, treatment, and causeshttps://www.medicalnewstoday.com/articles/184802
Following an event that triggers PEM, the person may be unable to leave the house, get out of bed, or do regular chores for several days or even weeks. […] The symptoms tend to become worse 12 to 48 hours after the exertion. […] A range of sleep disorders can occur with ME/CFS. […] The person may feel very sleepy but be unable to sleep or not feel refreshed after sleeping. […] As well as the three core symptoms above, one of the following two symptoms must be present for a diagnosis of ME/CFS, according to the CDC. […] People may experience brain fog, which includes problems with: making decisions, focusing on details, thinking quickly, remembering things. […] Pain is a common symptom. […] A person with ME/CFS will often experience pain or discomfort that does not stem from an injury or other identifiable cause.
- #1 Chronic Fatigue Syndrome: Causes, Symptoms, and Treatmenthttps://patient.info/signs-symptoms/tiredness-fatigue/chronic-fatigue-syndrome-myalgic-encephalomyelitis
Post-exertional malaise (PEM): feeling unwell with no energy after activities, with a worsening of symptoms that: Often doesn’t start until hours or days after the activity. Is much greater than expected for that particular activity. Has a prolonged recovery time that may last hours, days, weeks or longer. […] Unrefreshing sleep problems or sleep disturbance, which may include: Feeling exhausted all the time, feeling flu-like and stiff on waking. […] The diagnosis can only be confirmed after three months of persistent long-term symptoms and only if the symptoms cannot be explained by any other condition. Long Covid may cause similar symptoms to ME/CFS. […] Symptoms vary widely in severity and people may have some symptoms more severely than others. […] Chronic fatigue syndrome can affect anyone. It is estimated that CFS affects an average of between one and five people in every 1,000 in the UK.
- #1 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – symptoms and treatment | healthdirecthttps://www.healthdirect.gov.au/chronic-fatigue-syndrome-cfs-me
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex illness where extreme tiredness and other symptoms reduce your ability to function. […] These symptoms get worse after exercise or mental effort and don’t improve with rest or sleep. […] Persistent and profound fatigue is just one symptom of ME/CFS. Other common symptoms of ME/CFS are: thinking problems, loss of memory or poor concentration, pain headaches, muscle pain or joint pain, unrefreshing sleep or sleep disturbance, a sore throat, feeling dizzy, lightheaded or sick, feeling like your heart is beating fast. […] The key symptom of ME/CFS is post-exertional malaise (PEM). This means that your symptoms get worse after physical or mental activity. […] Your PEM may appear immediately after activities or may be delayed by up to 3 days. It can take 24 hours or more to recover. Symptoms do not improve with rest.
- #1https://111.wales.nhs.uk/encyclopaedia/m/article/myalgicencephalomyelitischronicfatiguesyndrome(mecfs)
Other symptoms of ME/CFS can include a sore throat or sore glands that are not swollen, flu-like symptoms, feeling dizzy or sick, and orthostatic intolerance. […] Most cases of ME/CFS are mild or moderate, but 1 in 4 people have severe symptoms. […] People with mild ME/CFS care for themselves and do some light domestic tasks but may have difficulties with mobility. […] People with moderate ME/CFS have reduced mobility and are restricted in all activities of daily living. […] People with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only. […] People with very severe ME/CFS are in bed all day and dependent on care. […] There may be times when your symptoms get worse. These periods are known as flare-ups or relapses. […] The symptoms of ME/CFS are similar to those of other conditions.
- #1 Chronic fatigue syndrome (CFS) | Better Health Channelhttps://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs
ME/CFS affects different people in different ways, some more severely than others. […] For most people, ME/CFS is a lifelong disease. Full recovery (a return to pre-illness functioning) is rare and estimated at less than 10%. […] The severity of ME/CFS can vary over time. A person living with ME/CFS could be at one level of severity now, then their disease could either improve or deteriorate over time. […] Exercise is not a cure or treatment for ME/CFS. It does not repair the underlying problem, but can help improve functional strength or fitness if done safely. […] About 25% of people with ME/CFS are housebound or bedbound. […] ME/CFS can affect people of all ages, including the very young. […] 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.
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- #1 Onset patterns and course of myalgic encephalomyelitis/ chronic fatigue syndrome, 2019, Chu et al | Science for MEhttps://www.s4me.info/threads/onset-patterns-and-course-of-myalgic-encephalomyelitis-chronic-fatigue-syndrome-2019-chu-et-al.7691/
The most common peri-onset events reported by subjects were infection-related episodes (64%), stressful incidents (39%), and exposure to environmental toxins (20%). […] For 38% of subjects, more than 6 months elapsed from experiencing any initial symptom to developing the set of symptoms comprising their ME/CFS. […] Over time, the 12 most common symptoms persisted but declined in prevalence, with fatigue, unrefreshing sleep, exertion-related sickness, and flu-like symptoms declining the most (by 20%-25%). […] Conversely, cognitive symptoms changed the least in prevalence, rising in symptom ranking. […] Fatigue-related function was not associated with duration of illness or age; during the worst periods of their illness, 48% of subjects could not engage in any productive activity. […] At the time of survey, 47% were unable to work and only 4% felt their condition was improving steadily with the majority (59%) describing a fluctuating course.
- #1 Frontiers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primerhttps://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2017.00121/full
There is evidence that several predisposing and precipitating factors can contribute to the illness, but evidence for perpetuating factors is limited. Being female is a predisposing factor in post-pubertal adolescents. The prevalence of ME/CFS is 3â4 times higher in adolescent girls than in boys. […] Sporadic cases of ME/CFS can be preceded (triggered) by: a viral, bacterial, or parasitic infection, an immunization, significant physical or emotional trauma, overexertion, chronic sleep deprivation, exposure to a toxin, or an atypical adverse reaction to a medication. In some patients no precipitating factor can be identified. […] Myalgic encephalomyelitis/chronic fatigue syndrome can begin suddenly, gradually, or with an abrupt increase in the intensity and frequency of milder chronic symptoms. There can be a history of repeated minor relapsing and remitting prodromal illnesses over the months or years preceding the onset. An acute onset of fever and viral-like symptoms is common, and the onset also can be marked by severe orthostatic symptoms. ME/CFS can follow a known illness such as infectious mononucleosis. A gradual onset is more common in younger children and can occur over months or years.
- #1 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | MedlinePlushttps://medlineplus.gov/myalgicencephalomyelitischronicfatiguesyndrome.html
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. Another name for it is chronic fatigue syndrome (CFS). ME/CFS can often make you unable to do your usual activities. Sometimes you may not even be able to get out of bed. […] The primary, or core, symptoms of ME/CFS are: Not being able to do activities that you used to do before the illness, along with severe fatigue. The fatigue must last six months or longer, and it is not improved by rest. Post-exertional malaise (PEM), which means that your symptoms get worse after any physical or mental activity. Sleep problems. […] Some of the other symptoms that ME/CFS can cause include: Pain, including muscle pain, joint pain, and headaches; Sore throat; Tender lymph nodes (glands) in the neck or armpits; Digestive issues, like irritable bowel syndrome; Chills and night sweats; Allergies and sensitivities to foods, odors, chemicals, light, or noise. […] ME/CFS can be unpredictable. Your symptoms may come and go. They may change over time; sometimes they might get better, and other times they may get worse.
- #1 Chronic Fatigue Syndrome: Causes, Symptoms, and Treatmenthttps://www.healthline.com/health/chronic-fatigue-syndrome
Symptoms of CFS vary based on the individual and the severity of the condition. […] CFS affects some people in cycles, with periods of feeling worse and then better. […] Symptoms may sometimes even disappear completely, which is referred to as remission. However, its still possible for symptoms to return later, which is referred to as a relapse. […] CFS progresses differently in everyone, so its important to work with your doctor to create a treatment plan that meets your needs.
- #1https://www.painscale.com/article/progression-and-potential-complications-of-myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a condition characterized by extreme fatigue, difficulty concentrating, memory issues, trouble sleeping, muscle or joint aches, and other symptoms. These symptoms often worsen after physical or mental activity, which is known as post-exertional malaise (PEM). […] ME/CFS typically develops after a specific occurrence (e.g., an infection or illness, a stressful event or time period, or exposure to environmental toxins, such as mold). The symptoms may be sporadic at first and then progress to more consistent illness. The pace of progression ranges from rapid (days) to gradual (years). […] For the majority of individuals with ME/CFS, symptoms dont ever completely go away; they often fluctuate in severity but are always present. However, some people with ME/CFS may have periods in which symptoms subside, called remission, and periods in which they return, called relapse. A remission period can last for several months. Individuals who do not experience remission may have symptoms that remain relatively consistent or worsen. […] There is no cure for ME/CFS. However, treatments can help reduce symptoms and improve quality of life.
- #1 Patient education: Myalgic encephalomyelitis/chronic fatigue syndrome (Beyond the Basics) – UpToDatehttps://www.uptodate.com/contents/myalgic-encephalomyelitis-chronic-fatigue-syndrome-beyond-the-basics
Chronic fatigue syndrome (CFS) is a disorder that causes unexplained, persistent, and sometimes debilitating fatigue. It is also known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). There is evidence of underlying abnormalities in the nervous system, the immune system, and metabolic function in people with the condition. However, it can be difficult to diagnose CFS due to the general nature of the symptoms and the lack of a definitive diagnostic test. […] At this time, there is no specific therapy for CFS, which can make living with the condition frustrating. The goal of treatment is to manage symptoms. Also, research on how the disorder affects people over time has yielded somewhat conflicting results. Some people notice an improvement in their symptoms over time, while others get worse. Regardless of its long-term prognosis, CFS does not result in organ failure.
- #1 Frontiers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primerhttps://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2017.00121/full
Symptoms often fluctuate significantly during the day and from day-to-day. Commonly, patients are slow to get moving upon awakening, with somewhat better function later in the day. Reduced ability to function after activity (physical, cognitive, emotional, orthostatic stress, or academic pressure)âoften referred to as âa crashâ by patientsâwith prolonged recovery is a feature. […] The course of ME/CFS is very unpredictable but must often be measured in years, not weeks or months. Remissions and relapses are common. Relapses can be caused by overexertion, infectious illnesses or failure to recover from a âcrash.â Dramatic improvement sometimes occurs in the first 4 years, but slow improvement over time is more likely. […] It is generally accepted that young people with ME/CFS have a more favorable prognosis than adults. There have been few studies with sufficient numbers and duration of follow-up to be confident of the findings, but factors such as severity of symptoms or age at onset have not been shown to be reliable predictors of long-term outcomes. In a follow-up study of nearly 700 young people the average duration of illness of those who report having ârecoveredâ was 4â5 years with a range from 1 to 15 years. By 5 years, 60% reported recovery, and by 12 years, 88% reported recovery. Of those who reported recovery, about one-third admitted to modifying their activities to remain feeling well. Several other studies found that although many patients improved, 20â48% showed no improvement or actually had worse fatigue and physical impairment at follow-up times ranging from 2 to 13 years. Even among those who report having completely recovered, many describe persistent symptoms that are not reported by healthy individuals.
- #1 What is ME? – Action for MEVisit our FacebookVisit our InstagramVisit our LinkedInVisit our YouTube channelsearchchevron-rightchevron-downlinkedinfacebookpinterestyoutubersstwitterinstagramfacebook-blankrss-blanklinkedin-blankpinterestyoutubetwitterinstaghttps://www.actionforme.org.uk/get-information/what-is-me/what-does-me-feel-like/
Sadly the majority of people with ME remain ill for decades. A small proportion do recover fully, and others to a degree, however it is not clear why this happens. […] There are an estimated 1.3 million people in the UK with ME or ME-like symptoms, including post-exertional malaise: the hallmark symptoms of ME. […] A recent systematic review found that over half of long Covid patients met the diagnostic criteria for ME and other studies have identified common biological mechanisms and gene expression patterns.
- #1 What is ME? – Action for MEVisit our FacebookVisit our InstagramVisit our LinkedInVisit our YouTube channelsearchchevron-rightchevron-downlinkedinfacebookpinterestyoutubersstwitterinstagramfacebook-blankrss-blanklinkedin-blankpinterestyoutubetwitterinstaghttps://www.actionforme.org.uk/supporting-you/what-is-me/
Around one in four people with ME can become severely affected by the condition. They are often left house or bedbound and accessing appropriate care and support can be challenging. […] Sadly the majority of people with ME remain ill for decades. A small proportion do recover fully, and others to a degree, however it is not clear why this happens. […] There are an estimated 1.3 million people in the UK with ME or ME-like symptoms, including post-exertional malaise: the hallmark symptoms of ME. […] A recent systematic review found that over half of long Covid patients met the diagnostic criteria for ME and other studies have identified common biological mechanisms and gene expression patterns.
- #1 About the Disease – Solve ME/CFS Initiativehttps://solvecfs.org/me-cfs-long-covid/about-the-disease/
The severity of ME/CFS varies greatly from patient to patient, with some people able to maintain fairly active lives. For others, ME/CFS has a profound impact. About 25 percent of people with ME/CFS are housebound or bedbound as a result of their illness. […] The time to recovery from ME/CFS varies. Some patients recover in small to moderate degrees, while others recover almost fully, but no one knows why. Others have progressively worse symptoms over time. Unfortunately, very little data exists about recovery rates for ME/CFS. […] There is currently no cure for ME/CFS but there is evidence that the sooner you get a diagnosis, the greater the chances of recovering. Getting diagnosed early is important!
- #1 ME or CFS | NHS informhttps://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/myalgic-encephalomyelitis-me-or-chronic-fatigue-syndrome-cfs/
Simple physical or mental activities, or combinations of activities, can leave people with ME/CFS feeling completely exhausted. It can also lead to an increase in other symptoms. […] Other symptoms of ME/CFS include: feeling generally unwell, pain, broken sleep, problems with concentration, thinking and memory (brain fog), speech and language problems, including word-finding difficulties, poor temperature control, dizziness, being very sensitive to light and sound, nausea, loss of appetite, muscle pain (myalgia). […] Frustration, anxiety, low mood and depression are sometimes experienced by people with ME/CFS because of the impact of the condition and its symptoms on their lives. This does not mean that ME/CFS is a mental health condition. […] ME/CFS may appear suddenly or more slowly over time. It may follow an infection, typically, but not always, viral. […] Most people with ME/CFS improve over time, although some people don’t make a full recovery. It’s also likely there will be periods when symptoms get better or worse. Children and young people with ME/CFS are more likely to recover fully.
- #1https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/
Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a long-term condition that can affect different parts of the body. The most common symptom is extreme tiredness. The cause of ME/CFS is unknown. […] The 4 main symptoms of ME/CFS are: feeling extremely tired all the time (fatigue), which can make daily activities like taking a shower, or going to work or school, difficult; sleep problems, including insomnia, sleeping too much, feeling like you have not slept properly and feeling exhausted or stiff when you wake up; problems with thinking, concentration and memory (brain fog); symptoms getting worse after physical or mental activity, and possibly taking weeks to get better (also called post-exertional malaise, or PEM). […] Some people with ME/CFS may also have pain in different parts of the body or flu-like symptoms, such as high temperature, headache and aching joints or muscles. […] Living with ME/CFS can be difficult. Extreme tiredness and other physical symptoms can make it hard to carry out everyday activities. You may have to make some major lifestyle changes. […] ME/CFS can also affect your mental and emotional health, and have a negative effect on your self-esteem.
- #1 ME/CFS Basics | ME/CFS | CDChttps://www.cdc.gov/me-cfs/about/index.html
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious and often long-lasting illness that keeps people from doing their usual activities. […] Symptoms include trouble thinking, severe tiredness and other symptoms. […] ME/CFS is a biological illness that affects many body parts. It causes severe fatigue not improved by rest, problems thinking and sleeping, dizziness, pain, and many other symptoms. […] People with ME/CFS may not look sick but can’t do their normal activities. ME/CFS may get worse after they do any activity — physical or mental. This symptom is called post-exertional malaise (PEM). […] About 1 in 4 people with ME/CFS are confined to bed at some point in their illness. […] ME/CFS often makes it hard to keep a job, go to school, and take part in family and social life. ME/CFS can last for years and sometimes leads to serious disability.
- #1 ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome)https://www.informedhealth.org/mecfs-myalgic-encephalomyelitischronic-fatigue-syndrome.html
Depending on how severe the illness is, you may find it very difficult or even impossible to do normal daily activities. […] For people with more severe ME/CFS, simple everyday tasks become extremely tiring like getting dressed, taking a shower or cooking. […] People with very severe ME/CFS need nursing care and a lot of support. […] There is currently no cure for ME/CFS. There also isnt any medication to treat it with. […] ME/CFS might be caused by different things in different people. The type of symptoms and their severity vary a lot too. […] ME/CFS makes it difficult (or impossible) to do activities and doing activities can make your symptoms worse (often called a crash). […] It is important to know your own limits and learn how you can avoid PEM. […] With time, its possible to cope better with the illness despite all the restrictions it brings.
- #1 Long COVID, ME/CFS and the Importance of Studying Infection-Associated Illnesses > News > Yale Medicinehttps://www.yalemedicine.org/news/long-covid-mecfs-and-the-importance-of-studying-infection-associated-illnesses
Research has shown that ME/CFS involves dysfunction of the immune and nervous systems, as well as cardiovascular, connective tissue, gastrointestinal, metabolic, and mitochondrial dysfunction. […] ME/CFS is characterized by prolonged and severe fatigue, and by symptoms that worsen after physical or cognitive exertion (known as post-exertional malaise, or PEM), sleep disturbances, brain fog/difficulty thinking, dizziness and orthostatic intolerance, headaches, muscle weakness and pain, and more. […] Studies over the last few years have found that about half of people with Long COVID meet diagnostic criteria for ME/CFS, and the prevalence of ME/CFS has been growing as a result of the pandemic and Long COVID. […] Fatigue is a hallmark of ME/CFS and Long COVID. […] ME/CFS is a severe, disabling, and life-altering disease: 75% of ME/CFS patients are too ill to work, and a quarter of patients are unable to leave their homes or, in some cases, their beds.
- #1 Myalgic Encephalomyelitis (https://www.health.ny.gov/diseases/conditions/me-cfs/
Myalgic Encephalomyelitis (ME), commonly referred to as chronic fatigue syndrome or ME/CFS, is a serious, debilitating, chronic disease that affects multiple body systems, including the nervous system, the immune system, and the body’s production of energy. […] People with ME can experience a wide range of symptoms and levels of severity. […] The most recognizable symptom of ME is post-exertional malaise (PEM), experienced by all people with ME. […] In addition to PEM, people with ME experience a range of other bodily symptoms that can be severe and impact their daily functioning. […] Most adults with ME are unable to work either full or part time and children may either not be able to attend school or require a lot of help with school. […] One out of four people with ME are housebound or bedbound, and three out of four are housebound or bedbound on their worst days.
- #1 Frontiers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primerhttps://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2017.00121/full
Pediatric myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disease characterized by overwhelming fatigue and a substantial loss of physical and cognitive function. The etiology is uncertain and there is no curative treatment. The cardinal feature is a sensation of feeling ill (malaise) and worsening of symptoms following minimal physical or mental exertion. This post-exertional worsening can persist for hours, days, or weeks, and is not relieved by rest or sleep. Other symptoms include unrefreshing or disturbed sleep, cognitive impairment, and a multitude of immune, neurological, and autonomic symptoms. Orthostatic intolerance (OI) is a common co-morbid condition. […] While all patients experience a substantial loss of physical and cognitive functioning, there is a wide spectrum of severity. Mildly affected young people might be able to attend school full-time or part-time, but they might have to limit sport and after-school activities and have frequent school absences. ME/CFS has been found to be the most common cause of long-term absence from school. More severely affected young people can be wheelchair dependent, housebound, or bedbound. The more impaired might even have difficulty participating in home tutoring sessions. In young persons with ME/CFS, overall self-reported quality of life is often lower than in other illnesses such as diabetes, epilepsy, and cystic fibrosis.
- #1 Myalgic encephalomyelitis/chronic fatigue syndrome – Wikipediahttps://en.wikipedia.org/wiki/Myalgic_encephalomyelitis/chronic_fatigue_syndrome
Unrefreshing sleep is a further core symptom. People wake up exhausted and stiff rather than restored after a night’s sleep. […] Cognitive dysfunction in ME/CFS can be as disabling as physical symptoms, leading to difficulties at work or school, as well as in social interactions. […] People with ME/CFS often experience orthostatic intolerance, symptoms that start or worsen with standing or sitting. […] ME/CFS often leads to serious disability, but the degree varies considerably. […] Roughly a quarter of those living with ME/CFS fall into the mild category, and half fall into the moderate or moderate-to-severe categories. […] The cause of ME/CFS is not yet known. […] Between 60% and 80% of cases start after an infection, usually a viral infection. […] ME/CFS can affect people of all ages, ethnicities, and income levels, but it is more common in women than men.
- #1 Long COVID, ME/CFS and the Importance of Studying Infection-Associated Illnesses > News > Yale Medicinehttps://www.yalemedicine.org/news/long-covid-mecfs-and-the-importance-of-studying-infection-associated-illnesses
The level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure and chronic obstructive pulmonary disease. […] The fatigue drops you where you are. There is usually no pushing through. Its so much worse. You just cant function. […] We need to include severe patient cohorts in research, even if it means visiting them at home while they are in bed. […] These illnesses urgently need effective treatments.
- #1 What Is ME/CFS? – Open Medicine Foundationhttps://www.omf.ngo/what-is-mecfs/
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) significantly impacts daily living, with profound fatigue that makes routine tasks challenging. This condition often leads to cognitive difficulties, such as memory issues and concentration problems, affecting work and social interactions. Physical symptoms like muscle pain and post-exertional malaise restrict activity levels and may necessitate days of recovery after even minor exertions. The unpredictable nature of the illness can cause social isolation, emotional distress, and financial strain due to reduced work capacity. Additionally, sleep disturbances further exacerbate daily fatigue, complicating overall management and quality of life.
- #1 Onset patterns and course of myalgic encephalomyelitis/ chronic fatigue syndrome, 2019, Chu et al | Science for MEhttps://www.s4me.info/threads/onset-patterns-and-course-of-myalgic-encephalomyelitis-chronic-fatigue-syndrome-2019-chu-et-al.7691/
Ninety-seven percent suffered from at least one other illness: anxiety (48%), depression (43%), fibromyalgia (39%), irritable bowel syndrome (38%), and migraine headaches (37%) were the most diagnosed conditions. […] This paper offers a broad epidemiologic overview of one ME/CFS cohort in the United States. […] While most of our findings are consistent with prior studies, we highlight underexamined aspects of this condition (e.g. the evolution of symptoms) and propose new interpretations of findings. […] Studying these aspects can offer insight and solutions to the diagnosis, etiology, pathophysiology, and treatment of this condition.
- #1 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – Diagnosis and treatment – Mayo Clinichttps://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/diagnosis-treatment/drc-20360510
There’s no single test to confirm a diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Symptoms can mimic those of many other health problems, including: […] It’s also common for people who have ME/CFS to also have other health problems at the same time, such as sleep disorders, irritable bowel syndrome or fibromyalgia. […] In fact, there are so many overlapping symptoms between this condition and fibromyalgia that some researchers consider the two disorders to be different aspects of the same disease. […] Guidelines proposed by the United States Institute of Medicine define the fatigue associated with ME/CFS as being: […] To meet the Institute of Medicine’s diagnostic criteria for this condition, a person would also need to experience at least one of these two symptoms:
- #1 Patient education: Myalgic encephalomyelitis/chronic fatigue syndrome (Beyond the Basics) – UpToDatehttps://www.uptodate.com/contents/myalgic-encephalomyelitis-chronic-fatigue-syndrome-beyond-the-basics
The symptoms of CFS also can occur with other medical conditions. For this reason, if you have persistent fatigue or related symptoms, it’s very important to see a health care provider to rule out other potential causes. However, CFS can also occur at the same time as other illnesses, which can make diagnosis challenging. […] Despite extensive research, the cause of chronic fatigue syndrome (CFS) is not known. The illness sometimes follows a new infection, such as with Epstein-Barr virus (EBV) infection or Lyme disease, but ongoing, active infection with these triggers is not the cause of ME/CFS. […] Although the underlying cause of CFS has not been identified, health care providers understand that the syndrome and its symptoms are real. […] There is no test that is accurate enough to definitively diagnose chronic fatigue syndrome (CFS). CFS is diagnosed based on your medical history (including a review of the duration and severity of your symptoms) and physical examination.
- #1 Myalgic Encephalomyelitis: Causes, Symptoms, and Treatmenthttps://patient.info/doctor/myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs-pro
Diagnosing ME/CFS remains a challenge. Patients often struggle with their illness for years before an identification is made. Once diagnosed, patients often complain of receiving hostility from their healthcare provider as well as being subjected to treatment strategies that exacerbate their symptoms. […] 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. […] Approximately 50-80% of people with ME/CFS start suddenly with a flu-like illness. […] ME/CFS is often found after infection by a virus, bacterium, or parasite, suggesting an immunological dysfunction, accompanied by a strong genetic predisposition, as shown in twin analysis.
- #1 ME/CFS Basics | ME/CFS | CDChttps://www.cdc.gov/me-cfs/about/index.html
Symptoms of ME/CFS may appear similar to many other illnesses. There is no test to confirm ME/CFS. This makes it difficult to diagnose. […] There is no cure or approved treatment for ME/CFS. But some symptoms can be treated or managed. Treating these symptoms might provide relief for some people with ME/CFS but not others. […] People with ME/CFS, their families, and healthcare providers need to work together to decide which symptom causes the most problems.
- #1 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – symptoms and treatment | healthdirecthttps://www.healthdirect.gov.au/chronic-fatigue-syndrome-cfs-me
ME/CFS can be very disabling and can reduce your ability to complete your regular daily activities. Many people are unable to continue with their work or studies. […] There is no single test to diagnose ME/CFS. Your doctor will ask you about your symptoms, and how long you have had them. […] You can only receive a diagnosis of ME/CFS after you have had disabling fatigue for 6 months or more. In children and adolescents, these symptoms need to last for 3 months or more. […] There is no cure for ME/CFS, but there are several things your doctor may suggest to help manage your symptoms. […] Pacing, or energy management, aims to find the right balance between rest and everyday activities. This involves carefully planning activities and rest to avoid triggering symptoms. […] The combination of chronic symptoms and limited social support may place you at risk of depression.
- #1https://111.wales.nhs.uk/encyclopaedia/m/article/myalgicencephalomyelitischronicfatiguesyndrome(mecfs)
Energy management is a treatment that aims to teach you how to make best use of your energy levels in your day-to-day life, without making your symptoms worse. […] Cognitive behavioural therapy (CBT) aims to help you live with your symptoms. […] There’s no specific medicine for treating ME/CFS, but medicine can be used to relieve some of the symptoms. […] You may have sleep problems that make your ME/CFS symptoms worse. […] If you have severe ME/CFS and need to spend much of your time in bed, it can cause problems, including pressure sores and blood clots. […] A setback or relapse is when your symptoms get worse for a period of time.
- #1 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – Diagnosis and treatment – Mayo Clinichttps://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/diagnosis-treatment/drc-20360510
These symptoms must last for at least six months and occur at least half the time at moderate, substantial or severe intensity. […] There is no cure for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Treatment focuses on symptom relief. The most disruptive or disabling symptoms should be addressed first. […] People with ME/CFS have a worsening of their symptoms after physical, mental or emotional effort. This is called post-exertional malaise. It usually begins within 12 to 24 hours after the activity, and it can last for days or weeks. […] The goal of pacing is to reduce post-exertional malaise, rather than getting back to the same activity level you had when you were healthy. […] Lack of sleep can make other symptoms more difficult to deal with. […] Many alternative therapies have been promoted for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), but very few have evidence that they work. […] The experience of ME/CFS varies from person to person. Emotional support and counseling may help you and your loved ones deal with the uncertainties and restrictions of this disorder.
- #1 COVID-19 may trigger chronic fatigue syndrome – Kaiser Permanente Division of Researchhttps://divisionofresearch.kaiserpermanente.org/covid-may-trigger-chronic-fatigue-syndrome/
A study following Kaiser Permanente Northern California (KPNC) patients with symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in 2022 found 14% of them developed symptoms after having COVID-19. […] The study explored the relationship between COVID-19 and ME/CFS, a debilitating condition that can include extreme fatigue, post-exertional malaise, sleep issues, and brain fog or dizziness. […] Overall, the researchers estimated that 1.67%, or 45,892, of 2.7 million adult KPNC members had ME/CFS-like syndrome during the study period, July to October 2022. Of those, 14.1% developed the illness after COVID-19. […] All the patients with ME/CFS-like illness had significant impairment in physical, mental, emotional, social, and occupational functioning compared with patients without the illness.
- #1 Chronic Fatigue Syndrome (Myalgic Encephalomyelitis) Clinical Presentation: History, Physical Examinationhttps://emedicine.medscape.com/article/235980-clinical
In the oropharynx, purple or crimson crescent discoloration of both anterior tonsillar pillars in the absence of pharyngitis is a frequent marker in patients with CFS. […] The cause of crimson crescents is unknown, but they are common in patients with CFS. […] Nonetheless, crimson crescents are not specific for CFS. […] Trigger points, which suggest fibromyalgia, are absent in patients with CFS. […] Fibromyalgia and CFS rarely coexist in the same patient. […] How Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Progresses: The Natural History of ME/CFS.
- #1 Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness | The National Academies Presshttps://nap.nationalacademies.org/catalog/19012/beyond-myalgic-encephalomyelitischronic-fatigue-syndrome-redefining-an-illness
Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that affect millions of people in the United States and around the world. ME/CFS can cause significant impairment and disability. Despite substantial efforts by researchers to better understand ME/CFS, there is no known cause or effective treatment. Diagnosing the disease remains a challenge, and patients often struggle with their illness for years before an identification is made. Some health care providers have been skeptical about the serious physiological – rather than psychological – nature of the illness. Once diagnosed, patients often complain of receiving hostility from their health care provider as well as being subjected to treatment strategies that exacerbate their symptoms. […] This report lists the major symptoms of SEID and recommends a diagnostic process. One of the report’s most important conclusions is that a thorough history, physical examination, and targeted work-up are necessary and often sufficient for diagnosis. The new criteria will allow a large percentage of undiagnosed patients to receive an accurate diagnosis and appropriate care.
- #2 ME/CFS Basics | ME/CFS | CDChttps://www.cdc.gov/me-cfs/about/index.html
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious and often long-lasting illness that keeps people from doing their usual activities. […] Symptoms include trouble thinking, severe tiredness and other symptoms. […] ME/CFS is a biological illness that affects many body parts. It causes severe fatigue not improved by rest, problems thinking and sleeping, dizziness, pain, and many other symptoms. […] People with ME/CFS may not look sick but can’t do their normal activities. ME/CFS may get worse after they do any activity — physical or mental. This symptom is called post-exertional malaise (PEM). […] About 1 in 4 people with ME/CFS are confined to bed at some point in their illness. […] ME/CFS often makes it hard to keep a job, go to school, and take part in family and social life. ME/CFS can last for years and sometimes leads to serious disability.
- #2 Chronic Fatigue Syndrome – Harvard Healthhttps://www.health.harvard.edu/a_to_z/chronic-fatigue-syndrome-a-to-z
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complicated illness characterized by at least six months of extreme fatigue that is not relieved by rest, and a group of additional symptoms that also are constant for at least six months. […] The most prominent symptom of ME/CFS is an unexplained feeling of fatigue, which is not relieved by rest. […] To better identify people with ME/CFS, diagnostic criteria should include these four types of symptoms: A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social or personal activities for longer than 6 months; Post-exertional malaise (PEM), which is a worsening of symptoms following physical, mental, or emotional exertion that would not have caused a problem before the illness; Unrefreshing sleep that leaves not feeling better or perhaps even feeling worse after a full nights sleep and no other reason for poor sleep quality; One or both of these neurological symptoms: Cognitive impairment, such as problems with thinking, memory, attention, organization skills, and information processing.
- #2 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): MedlinePlus Medical EncyclopediaLockhttps://medlineplus.gov/ency/article/001244.htm
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a long-term illness that affects many body systems. People with this illness are not able to do their usual activities. Sometimes, they may be confined to bed. The condition can also be called systemic exertional intolerance disease (SEID). […] One common symptom is severe fatigue. It does not get better with rest and is not directly caused by other medical problems. Other symptoms can include problems with thinking and concentrating, pain, and dizziness. […] There are three main, or „core,” symptoms in people with ME/CFS: Profound fatigue, Worsening symptoms after physical or mental activity, Sleep problems. […] People with ME/CFS have persistent and profound fatigue and are unable to do activities they were able to do before the illness. This extreme fatigue is: New, Lasts at least 6 months, Not due to unusual or intense activity, Not relieved by sleep or bed rest, Severe enough to keep you from participating in certain activities.
- #2 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – symptoms and treatment | healthdirecthttps://www.healthdirect.gov.au/chronic-fatigue-syndrome-cfs-me
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex illness where extreme tiredness and other symptoms reduce your ability to function. […] These symptoms get worse after exercise or mental effort and don’t improve with rest or sleep. […] Persistent and profound fatigue is just one symptom of ME/CFS. Other common symptoms of ME/CFS are: thinking problems, loss of memory or poor concentration, pain headaches, muscle pain or joint pain, unrefreshing sleep or sleep disturbance, a sore throat, feeling dizzy, lightheaded or sick, feeling like your heart is beating fast. […] The key symptom of ME/CFS is post-exertional malaise (PEM). This means that your symptoms get worse after physical or mental activity. […] Your PEM may appear immediately after activities or may be delayed by up to 3 days. It can take 24 hours or more to recover. Symptoms do not improve with rest.
- #2 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)https://my.clevelandclinic.org/health/diseases/17720-myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs
Chronic fatigue syndrome (CFS) is a type of fatigue or exhaustion that lasts six months or longer. This can prevent you from completing your daily routine or getting out of bed. In addition, it can cause headaches and joint and muscle pain. Treatment can help manage symptoms with medication, sleep hygiene and activity management. […] Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) or chronic fatigue syndrome (CFS) is a condition that causes you to feel so tired and exhausted that it interferes with your ability to complete your daily routine or even get out of bed. Your fatigue doesn’t improve with rest and gets worse after physical activity or mental exertion. Symptoms usually last for six months or longer. […] Symptoms of chronic fatigue syndrome include: Severe fatigue lasting at least six months that doesn’t improve with rest or sleep. Difficulty sleeping (falling or staying asleep). Headaches. Joint pain. Muscle aches. Difficulty with thinking, attention, concentration and memory.
- #2 Patient education: Myalgic encephalomyelitis/chronic fatigue syndrome (Beyond the Basics) – UpToDatehttps://www.uptodate.com/contents/myalgic-encephalomyelitis-chronic-fatigue-syndrome-beyond-the-basics
Persistent fatigue that can be overwhelming is a hallmark of chronic fatigue syndrome (CFS). The fatigue may develop suddenly, often after an infection such as an upper respiratory infection (eg, the common cold or flu) or mononucleosis („mono”). However, in some people, fatigue may develop gradually over several months. The fatigue can produce substantial impairment in your ability to function at home or at work, is not substantially relieved by resting, and must be present for more than six months in order to be diagnosed as CFS. […] Other important features include: Post-exertional malaise â This is the term for a prolonged worsening of symptoms after certain stressors such as physical exertion, using a lot of mental energy (for example, doing your taxes), or standing for a long time. Unrefreshing sleep â This is typically characterized by awakening feeling unrefreshed nearly every morning. Memory and concentration problems. Orthostatic intolerance â This is when symptoms worsen when you stand up and maintain an upright posture and improve (though not necessarily resolve) when you lie down.
- #2https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/symptoms/
There are 4 main symptoms of myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). […] The extreme tiredness (fatigue) associated with ME/CFS does not go away with rest or sleep. This can make it difficult to carry out everyday tasks and activities. […] Most people with ME/CFS describe their fatigue as overwhelming and a different type of tiredness from what they’ve experienced before. […] Many people with ME/CFS also have serious problems with their sleep that do not get better. […] If you have ME/CFS, it’s also common to have problems remembering certain words, names or numbers. […] Symptoms of ME/CFS can get worse after activity (called post-exertional malaise, or PEM). […] Other symptoms of ME/CFS can include muscle or joint pain, headaches, a sore throat or sore glands that are not swollen, flu-like symptoms, feeling dizzy or sick, fast or irregular heartbeats (heart palpitations), muscle twitches or spasms, intolerance to alcohol or certain foods or chemicals, being very sensitive to light, sound, touch, taste and smell, having hot flushes or cold chills if the temperature changes, feeling dizzy, sick or fainting when standing up from a sitting or lying position. […] Most cases of ME/CFS are mild or moderate, but 1 in 4 people have severe symptoms. […] If your symptoms are severe, a specialist should be involved in your treatment. […] There may be times when your symptoms get worse. These periods are known as relapses.
- #2 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | MedlinePlushttps://medlineplus.gov/myalgicencephalomyelitischronicfatiguesyndrome.html
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. Another name for it is chronic fatigue syndrome (CFS). ME/CFS can often make you unable to do your usual activities. Sometimes you may not even be able to get out of bed. […] The primary, or core, symptoms of ME/CFS are: Not being able to do activities that you used to do before the illness, along with severe fatigue. The fatigue must last six months or longer, and it is not improved by rest. Post-exertional malaise (PEM), which means that your symptoms get worse after any physical or mental activity. Sleep problems. […] Some of the other symptoms that ME/CFS can cause include: Pain, including muscle pain, joint pain, and headaches; Sore throat; Tender lymph nodes (glands) in the neck or armpits; Digestive issues, like irritable bowel syndrome; Chills and night sweats; Allergies and sensitivities to foods, odors, chemicals, light, or noise. […] ME/CFS can be unpredictable. Your symptoms may come and go. They may change over time; sometimes they might get better, and other times they may get worse.
- #2 Chronic fatigue syndrome Information | Mount Sinai – New Yorkhttps://www.mountsinai.org/health-library/report/chronic-fatigue-syndrome
Other symptoms may include: […] Muscle pain […] Joint pain without redness or swelling […] Headaches that are new or different […] Sore throat that is frequent or recurring […] Sore lymph nodes in neck or under arms […] Stomach problems […] Sensitivity to substances found in food, medications, or chemicals. […] Additional symptoms that have been associated with CFS include abdominal bloating, urinary problems, alcohol intolerance, and sensitivity to light and loud noise.
- #2 Chronic fatigue syndrome (CFS) | Better Health Channelhttps://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs
The core symptom of ME/CFS is called post-exertional malaise (PEM), which is an increase in symptoms and reduction in function after minimal physical or mental activity. […] People living with ME/CFS can experience a wide range of debilitating symptoms. They are not just tired. […] Research shows that people with ME/CFS have a different physical response to activity or exercise from other people. This includes abnormal exhaustion after any physical or mental activity that would not have caused problems before developing ME/CFS. […] Common symptoms include: problems with thinking, concentrating, memory loss, vision, clumsiness, muscle twitching or tingling (sometimes called neurocognitive problems), disrupted sleep, pain or aches in the muscles, joints or head, changes in blood pressure, feeling dizzy or pale, palpitations, increased heart rate or shortness of breath with exertion or on standing, allergies or sensitivities to light, smells, touch, sound, foods, chemicals and medications, gastrointestinal changes such as nausea, bloating, constipation, diarrhoea, urinary problems, sore throat, tender lymph nodes and a flu-like feeling, marked weight change extreme loss or gain, inability to cope with temperature changes.
- #2 Chronic fatigue syndrome: Symptoms, treatment, and causeshttps://www.medicalnewstoday.com/articles/184802
Following an event that triggers PEM, the person may be unable to leave the house, get out of bed, or do regular chores for several days or even weeks. […] The symptoms tend to become worse 12 to 48 hours after the exertion. […] A range of sleep disorders can occur with ME/CFS. […] The person may feel very sleepy but be unable to sleep or not feel refreshed after sleeping. […] As well as the three core symptoms above, one of the following two symptoms must be present for a diagnosis of ME/CFS, according to the CDC. […] People may experience brain fog, which includes problems with: making decisions, focusing on details, thinking quickly, remembering things. […] Pain is a common symptom. […] A person with ME/CFS will often experience pain or discomfort that does not stem from an injury or other identifiable cause.
- #2 Living with ME/CFS | Ausmedhttps://www.ausmed.com/learn/articles/chronic-fatigue-syndrome
ME/CFS is a disabling illness estimated to affect up to 250,000 Australians (DoHaAC 2024). […] Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), also known as myalgic encephalomyelitis (ME), is a complex, chronic neurological condition affecting the brain, muscles, digestive system, immune system, cardiac system and other areas of the body (Emerge Australia n.d.a). […] ME/CFS is characterised by post-exertional malaise (PEM), which describes the worsening of symptoms after physical or mental activity. Some people might experience PEM after going on a walk, while those with a more severe illness might trigger it by simply brushing their teeth or reading a sentence. Once triggered, PEM may persist for days, weeks or months (Emerge Australia n.d.a). […] PEM may not occur immediately after exertion and can start 24 to 48 hours later in some cases (Better Health Channel 2022).
- #2 Myalgic Encephalomyelitis | PM&R KnowledgeNowhttps://now.aapmr.org/myalgic-encephalomyelitis/
The crashes can vary in severity and time of onset, ranging from hours to days until patients experience the peak decline in function or worsening of their specific ME/CFS symptoms. […] The specific types of exertion that cause the crashes will vary from patient to patient, sometimes even simple activities of daily living can trigger a crash. […] When the crash resolves, the patients return to their prior level of function and typical ME/CFS symptom burden. […] Over time, patients can develop an understanding of their own triggering activities to minimize crashes. Other patients may get stuck in a cycle of over-exertion followed by crashes if they have not been educated on PEM which can appear to patients as progressive decline in function.
- #2 Myalgic encephalomyelitis/chronic fatigue syndrome – Wikipediahttps://en.wikipedia.org/wiki/Myalgic_encephalomyelitis/chronic_fatigue_syndrome
Unrefreshing sleep is a further core symptom. People wake up exhausted and stiff rather than restored after a night’s sleep. […] Cognitive dysfunction in ME/CFS can be as disabling as physical symptoms, leading to difficulties at work or school, as well as in social interactions. […] People with ME/CFS often experience orthostatic intolerance, symptoms that start or worsen with standing or sitting. […] ME/CFS often leads to serious disability, but the degree varies considerably. […] Roughly a quarter of those living with ME/CFS fall into the mild category, and half fall into the moderate or moderate-to-severe categories. […] The cause of ME/CFS is not yet known. […] Between 60% and 80% of cases start after an infection, usually a viral infection. […] ME/CFS can affect people of all ages, ethnicities, and income levels, but it is more common in women than men.
- #2 Myalgic Encephalomyelitis: Causes, Symptoms, and Treatmenthttps://patient.info/doctor/myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs-pro
Definitions of severity are not clear-cut because individual symptoms vary widely in severity, and people may have some symptoms more severely than others. […] Mild ME/CFS: able to care for themselves and do some light domestic tasks (sometimes needing support) but may have difficulties with mobility. […] Moderate ME/CFS: reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. […] Severe ME/CFS: unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). […] Very severe ME/CFS: remain in bed all day and dependent on care. […] ME/CFS in children and adolescents is characterised by overwhelming fatigue with a substantial loss of physical and mental stamina.
- #2 About the Disease – Solve ME/CFS Initiativehttps://solvecfs.org/me-cfs-long-covid/about-the-disease/
The severity of ME/CFS varies greatly from patient to patient, with some people able to maintain fairly active lives. For others, ME/CFS has a profound impact. About 25 percent of people with ME/CFS are housebound or bedbound as a result of their illness. […] The time to recovery from ME/CFS varies. Some patients recover in small to moderate degrees, while others recover almost fully, but no one knows why. Others have progressively worse symptoms over time. Unfortunately, very little data exists about recovery rates for ME/CFS. […] There is currently no cure for ME/CFS but there is evidence that the sooner you get a diagnosis, the greater the chances of recovering. Getting diagnosed early is important!
- #2 Frontiers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primerhttps://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2017.00121/full
There is evidence that several predisposing and precipitating factors can contribute to the illness, but evidence for perpetuating factors is limited. Being female is a predisposing factor in post-pubertal adolescents. The prevalence of ME/CFS is 3â4 times higher in adolescent girls than in boys. […] Sporadic cases of ME/CFS can be preceded (triggered) by: a viral, bacterial, or parasitic infection, an immunization, significant physical or emotional trauma, overexertion, chronic sleep deprivation, exposure to a toxin, or an atypical adverse reaction to a medication. In some patients no precipitating factor can be identified. […] Myalgic encephalomyelitis/chronic fatigue syndrome can begin suddenly, gradually, or with an abrupt increase in the intensity and frequency of milder chronic symptoms. There can be a history of repeated minor relapsing and remitting prodromal illnesses over the months or years preceding the onset. An acute onset of fever and viral-like symptoms is common, and the onset also can be marked by severe orthostatic symptoms. ME/CFS can follow a known illness such as infectious mononucleosis. A gradual onset is more common in younger children and can occur over months or years.
- #2 ME or CFS | NHS informhttps://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/myalgic-encephalomyelitis-me-or-chronic-fatigue-syndrome-cfs/
Simple physical or mental activities, or combinations of activities, can leave people with ME/CFS feeling completely exhausted. It can also lead to an increase in other symptoms. […] Other symptoms of ME/CFS include: feeling generally unwell, pain, broken sleep, problems with concentration, thinking and memory (brain fog), speech and language problems, including word-finding difficulties, poor temperature control, dizziness, being very sensitive to light and sound, nausea, loss of appetite, muscle pain (myalgia). […] Frustration, anxiety, low mood and depression are sometimes experienced by people with ME/CFS because of the impact of the condition and its symptoms on their lives. This does not mean that ME/CFS is a mental health condition. […] ME/CFS may appear suddenly or more slowly over time. It may follow an infection, typically, but not always, viral. […] Most people with ME/CFS improve over time, although some people don’t make a full recovery. It’s also likely there will be periods when symptoms get better or worse. Children and young people with ME/CFS are more likely to recover fully.
- #2 Myalgic encephalomyelitis/chronic fatigue syndrome – Wikipediahttps://en.wikipedia.org/wiki/Myalgic_encephalomyelitis/chronic_fatigue_syndrome
ME/CFS negatively impacts people’s social lives and relationships. […] Information on the prognosis of ME/CFS is limited. Complete recovery, partial improvement, and worsening are all possible, but full recovery is uncommon. […] Symptoms generally fluctuate over days, weeks, or longer periods, and some people may experience periods of remission.
- #2 Frontiers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primerhttps://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2017.00121/full
Symptoms often fluctuate significantly during the day and from day-to-day. Commonly, patients are slow to get moving upon awakening, with somewhat better function later in the day. Reduced ability to function after activity (physical, cognitive, emotional, orthostatic stress, or academic pressure)âoften referred to as âa crashâ by patientsâwith prolonged recovery is a feature. […] The course of ME/CFS is very unpredictable but must often be measured in years, not weeks or months. Remissions and relapses are common. Relapses can be caused by overexertion, infectious illnesses or failure to recover from a âcrash.â Dramatic improvement sometimes occurs in the first 4 years, but slow improvement over time is more likely. […] It is generally accepted that young people with ME/CFS have a more favorable prognosis than adults. There have been few studies with sufficient numbers and duration of follow-up to be confident of the findings, but factors such as severity of symptoms or age at onset have not been shown to be reliable predictors of long-term outcomes. In a follow-up study of nearly 700 young people the average duration of illness of those who report having ârecoveredâ was 4â5 years with a range from 1 to 15 years. By 5 years, 60% reported recovery, and by 12 years, 88% reported recovery. Of those who reported recovery, about one-third admitted to modifying their activities to remain feeling well. Several other studies found that although many patients improved, 20â48% showed no improvement or actually had worse fatigue and physical impairment at follow-up times ranging from 2 to 13 years. Even among those who report having completely recovered, many describe persistent symptoms that are not reported by healthy individuals.
- #2
- #2 Myalgic Encephalomyelitis: Causes, Symptoms, and Treatmenthttps://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 often severely disabling and can result in a very poor quality of life. […] ME/CFS can affect different aspects of the lives of people with ME/CFS and their families and carers, including activities of daily living, family life, social life, emotional well-being, work and education. […] ME/CFS is also a fluctuating condition in which a person’s symptoms can change unpredictably in nature and severity over a day, week or longer. […] The impacts of ME/CFS can be worsened by particular triggers (can be known or new triggers or in some cases there is no clear trigger), can be self-managed with support and advice, and can involve flare-ups and relapses even if symptoms are well managed.
- #2 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – symptoms and treatment | healthdirecthttps://www.healthdirect.gov.au/chronic-fatigue-syndrome-cfs-me
ME/CFS can be very disabling and can reduce your ability to complete your regular daily activities. Many people are unable to continue with their work or studies. […] There is no single test to diagnose ME/CFS. Your doctor will ask you about your symptoms, and how long you have had them. […] You can only receive a diagnosis of ME/CFS after you have had disabling fatigue for 6 months or more. In children and adolescents, these symptoms need to last for 3 months or more. […] There is no cure for ME/CFS, but there are several things your doctor may suggest to help manage your symptoms. […] Pacing, or energy management, aims to find the right balance between rest and everyday activities. This involves carefully planning activities and rest to avoid triggering symptoms. […] The combination of chronic symptoms and limited social support may place you at risk of depression.
- #2 Living with ME/CFS | Ausmedhttps://www.ausmed.com/learn/articles/chronic-fatigue-syndrome
These symptoms may fluctuate from hour to hour (Better Health Channel 2022). […] At least 25% of people living with ME/CFS are housebound or bed-bound due to severe symptoms (Emerge Australia n.d.a). […] Depending on the severity of their illness, people with ME/CFS may have difficulty: Performing daily tasks (e.g. having a shower or cooking), Keeping a job, attending school and participating in family and social life, Functioning the way they used to, Leaving the house (CDC 2024a; Better Health Channel 2022). […] Diagnosing ME/CFS often involves excluding other illnesses, as there is no single diagnostic test available (Better Health Channel 2022). […] As there is no cure for ME/CFS, treatment focuses on managing symptoms and optimising quality of life (Healthdirect 2024). […] People living with ME/CFS should never be pushed past their limits, as this can be harmful to their health (Better Health Channel 2022).
- #2 Long COVID, ME/CFS and the Importance of Studying Infection-Associated Illnesses > News > Yale Medicinehttps://www.yalemedicine.org/news/long-covid-mecfs-and-the-importance-of-studying-infection-associated-illnesses
The level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure and chronic obstructive pulmonary disease. […] The fatigue drops you where you are. There is usually no pushing through. Its so much worse. You just cant function. […] We need to include severe patient cohorts in research, even if it means visiting them at home while they are in bed. […] These illnesses urgently need effective treatments.
- #2 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – Diagnosis and treatment – Mayo Clinichttps://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/diagnosis-treatment/drc-20360510
There’s no single test to confirm a diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Symptoms can mimic those of many other health problems, including: […] It’s also common for people who have ME/CFS to also have other health problems at the same time, such as sleep disorders, irritable bowel syndrome or fibromyalgia. […] In fact, there are so many overlapping symptoms between this condition and fibromyalgia that some researchers consider the two disorders to be different aspects of the same disease. […] Guidelines proposed by the United States Institute of Medicine define the fatigue associated with ME/CFS as being: […] To meet the Institute of Medicine’s diagnostic criteria for this condition, a person would also need to experience at least one of these two symptoms:
- #2 Health Library | The University of Vermont Health Networkhttps://www.uvmhealth.org/medcenter/wellness-resources/health-library/hw32907
ME/CFS symptoms usually start suddenly. But for some people, they develop slowly over weeks or months. Symptoms can change in a day, and from day to day. And how severe the symptoms are can differ from person to person. […] The core symptoms are: Extreme physical fatigue, mental fatigue, or both. Fatigue can be constant, or it can come and go. It’s not relieved by rest. This fatigue also is so severe that it interferes with your work, play, and social activities. Worsening of symptoms after activity (post-exertional malaise). You may feel ill or weak or that your ME/CFS symptoms are worse after physical or mental activity. Even daily activities like showering, cooking, and reading can trigger symptoms. Often there is a delay of 24 hours before it starts. It can take days, weeks, or more to feel better. Sleep problems. You may have trouble sleeping. Or you may wake up feeling tired or not rested. Problems with thinking (cognitive impairment). You may have problems concentrating, remembering, or thinking of the right word. Feeling dizzy or faint while in an upright position (orthostatic intolerance). You may feel dizzy, weak, exhausted, confused, or in more pain when you have been standing or sitting upright for a long time. These symptoms usually improve or go away when you lie down. […] Most people with ME/CFS find that their symptoms greatly reduce their ability to do the things they want and need to do. But ME/CFS is different for everyone. Symptoms are worse for some people than for others.
- #2 Frontiers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primerhttps://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2017.00121/full
The diagnosis of ME/CFS is purely clinical and is based on the history and the exclusion of other fatiguing illnesses by physical examination and medical testing. Co-morbid illnesses are common and require appropriate treatment. Establishing a diagnosis frequently provides the patient and parents much relief. Early diagnosis of ME/CFS can lessen the impact of the illness through timely support and intervention. The unequivocal advice for careful avoidance of overexertion can help to both avoid deterioration and facilitate improvement. […] The underlying etiology of ME/CFS has not been established. Well-documented pathophysiological changes demonstrate that ME/CFS is a multisystem physical disease, not a psychological disorder. The wide variety of pathophysiological findings has led to multiple hypotheses for etiology. These include: infectious agents, immune dysfunction, autoimmune disorders, circulatory abnormalities, neuroendocrine disorders, metabolic disturbances, brain dysfunction, toxins, genetic susceptibility, abnormal gene expression, or a combination of any of these mechanisms.
- #2 About the Disease – Solve ME/CFS Initiativehttps://solvecfs.org/me-cfs-long-covid/about-the-disease/
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, complex, neuroimmune disease that profoundly limits the health and productivity of patients and, like Long Covid, is often triggered by an infection. […] At this time, the cause of ME/CFS is not fully understood. There is no diagnostic test, cure, nor FDA-approved treatments or drugs for ME/CFS, and patients often suffer for life. […] ME/CFS symptoms, which can often be made worse by standing upright, include: Post-exertional malaise (PEM), the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks. Persistent fatigue for six months or more. Non-restorative sleep/sleep disturbance. Brain fog/cognitive impairment. Joint pain. Inflamed lymph nodes. Neurological abnormalities. Complete organ system shutdown. Sensitivity to light, sound, odors, chemicals, foods, and medications. Headaches. Migraine. Dizziness. Muscle Pain. Sore Throat.
- #2 Myalgic Encephalomyelitis (https://www.health.ny.gov/diseases/conditions/me-cfs/
The most severely affected people with ME need around the clock care. […] Since the medical community does not have a test to prove that someone has ME, it can be challenging to diagnose and may take some time to do so. […] Adults typically experience worsening post-exertional malaise (PEM), unrefreshing sleep, cognitive problems and/or orthostatic intolerance, in addition to any of the other symptoms in the list above. […] In 2015, the National Academy of Medicine published new diagnostic criteria for ME, which require the presence of the following: substantial impairment in activity that lasts six months or more and is accompanied by fatigue, post-exertional malaise (PEM), unrefreshing sleep, and either cognitive impairment or orthostatic intolerance. […] Although cognitive behavior therapy (CBT) and graded exercise therapy (GET) were once recommended to treat patients with ME, these interventions assume that patients are afraid to exercise and thus become out of shape (deconditioned). […] Currently, there are no FDA-approved treatments specifically for ME. […] People with ME can be sensitive to medications so it is recommended to start at low doses.
- #2 ME/CFS Patient Education – Bateman Horne Centerhttps://batemanhornecenter.org/education/me-cfs/
Pacing reduces the frequency and severity of PEM and improves both symptoms and function. […] Sleep that remains non-restorative regardless of sleep duration, is a key factor when identifying the presence of this symptom. […] Impairments of cognitive function, and particularly slowed information processing are frequently reported in those with ME/CFS. […] Orthostatic Intolerance (OI), Orthostatic Hypotension (OH), Neurally Mediated Hypotension (NMH), and Postural Orthostatic Tachycardia Syndrome (POTS) are terms used to describe the exacerbation of symptoms during upright posture, that are relieved or ameliorated by lying down or reclining. […] Common Food Items High in Sodium […] Immune impairment: Acute infection-like onset, susceptibility to infection, perpetual flu-like symptoms, sore throat, tender lymph nodes, fever, new or worsened sensitivities to certain substances (e.g. foods, odors, medications, chemicals).
- #2https://111.wales.nhs.uk/encyclopaedia/m/article/myalgicencephalomyelitischronicfatiguesyndrome(mecfs)
Energy management is a treatment that aims to teach you how to make best use of your energy levels in your day-to-day life, without making your symptoms worse. […] Cognitive behavioural therapy (CBT) aims to help you live with your symptoms. […] There’s no specific medicine for treating ME/CFS, but medicine can be used to relieve some of the symptoms. […] You may have sleep problems that make your ME/CFS symptoms worse. […] If you have severe ME/CFS and need to spend much of your time in bed, it can cause problems, including pressure sores and blood clots. […] A setback or relapse is when your symptoms get worse for a period of time.
- #2 Long COVID, ME/CFS and the Importance of Studying Infection-Associated Illnesses > News > Yale Medicinehttps://www.yalemedicine.org/news/long-covid-mecfs-and-the-importance-of-studying-infection-associated-illnesses
Research has shown that ME/CFS involves dysfunction of the immune and nervous systems, as well as cardiovascular, connective tissue, gastrointestinal, metabolic, and mitochondrial dysfunction. […] ME/CFS is characterized by prolonged and severe fatigue, and by symptoms that worsen after physical or cognitive exertion (known as post-exertional malaise, or PEM), sleep disturbances, brain fog/difficulty thinking, dizziness and orthostatic intolerance, headaches, muscle weakness and pain, and more. […] Studies over the last few years have found that about half of people with Long COVID meet diagnostic criteria for ME/CFS, and the prevalence of ME/CFS has been growing as a result of the pandemic and Long COVID. […] Fatigue is a hallmark of ME/CFS and Long COVID. […] ME/CFS is a severe, disabling, and life-altering disease: 75% of ME/CFS patients are too ill to work, and a quarter of patients are unable to leave their homes or, in some cases, their beds.
- #2 Chronic Fatigue Syndrome (Myalgic Encephalomyelitis) Clinical Presentation: History, Physical Examinationhttps://emedicine.medscape.com/article/235980-clinical
In the oropharynx, purple or crimson crescent discoloration of both anterior tonsillar pillars in the absence of pharyngitis is a frequent marker in patients with CFS. […] The cause of crimson crescents is unknown, but they are common in patients with CFS. […] Nonetheless, crimson crescents are not specific for CFS. […] Trigger points, which suggest fibromyalgia, are absent in patients with CFS. […] Fibromyalgia and CFS rarely coexist in the same patient. […] How Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Progresses: The Natural History of ME/CFS.
- #2 Patient education: Myalgic encephalomyelitis/chronic fatigue syndrome (Beyond the Basics) – UpToDatehttps://www.uptodate.com/contents/myalgic-encephalomyelitis-chronic-fatigue-syndrome-beyond-the-basics
To be diagnosed with CFS, the above symptoms must have been present for at least six months with moderate, substantial, or severe intensity at least one-half of the time. […] There is no cure for chronic fatigue syndrome (CFS); instead, the goal of treatment is to reduce symptoms of the illness and help improve your quality of life. Many therapies have been tried in CFS, but none have been consistently successful. […] Living with chronic fatigue syndrome (CFS) can be frustrating and stressful, as the symptoms can affect your quality of life. Most people who develop CFS were generally healthy and active previously, which can make it particularly distressing. […] The most important factor in your ability to successfully cope with CFS is establishing a strong relationship with an experienced health care provider. Having a provider you can trust, who listens to you and understands that your symptoms are real, can be validating and helpful.
- #3 About ME/CFS | National Institutes of Health (NIH)https://www.nih.gov/mecfs/about-mecfs
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is a serious, chronic, complex, and systemic disease associated with neurological, immunological, autonomic, and energy metabolism dysfunction. Individuals with ME/CFS experience a range of symptoms including significant impairment in function, post-exertional malaise, sleep impairment, cognitive issues, pain, orthostatic intolerance, flu-like symptoms, sensory intolerance, gastrointestinal and genitourinary issues. Post-exertional malaise (PEM) is the hallmark of the disease in which even trivial amounts of activity result in a prolonged exacerbation of symptoms and a further reduction in function. […] At least one-quarter of individuals with ME/CFS are bedbound or housebound at some point in the disease and most never regain their pre-disease level of functioning. ME/CFS strikes people of all ages and racial, ethnic, and socioeconomic groups, and is diagnosed two to four times more often in women.
- #3 Chronic Fatigue Syndrome (Myalgic Encephalomyelitis): Practice Essentials, Background, Pathophysiologyhttps://emedicine.medscape.com/article/235980-overview
Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME) and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is a complex and debilitating condition characterized by unexplained severe fatigue that is not relieved by rest, cognitive dysfunction, and impaired daily functioning. It affects people of all ages and can have significant personal, social, and economic consequences. […] According to the National Academy of Medicine, diagnosis of ME/CFS requires the presence of the following 3 symptoms for more than 6 months, and the intensity of the symptoms should be moderate or severe for at least 50% of the time: Fatigue: A noticeable decrease or impairment in the ability of a patient to engage in activities that they enjoyed before the onset of the illness, with this impairment continuing for more than 6 months and associated with new-onset severe fatigue, unrelated to exertion, and not relieved by rest. Post-exertional malaise (PEM): Patients experience worsening symptoms and function after exposure to physical or cognitive stressors that were previously well tolerated. Unrefreshing sleep: Patients feel tired after a night’s sleep.
- #3 Chronic fatigue syndrome (CFS) | Better Health Channelhttps://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs
The core symptom of ME/CFS is called post-exertional malaise (PEM), which is an increase in symptoms and reduction in function after minimal physical or mental activity. […] People living with ME/CFS can experience a wide range of debilitating symptoms. They are not just tired. […] Research shows that people with ME/CFS have a different physical response to activity or exercise from other people. This includes abnormal exhaustion after any physical or mental activity that would not have caused problems before developing ME/CFS. […] Common symptoms include: problems with thinking, concentrating, memory loss, vision, clumsiness, muscle twitching or tingling (sometimes called neurocognitive problems), disrupted sleep, pain or aches in the muscles, joints or head, changes in blood pressure, feeling dizzy or pale, palpitations, increased heart rate or shortness of breath with exertion or on standing, allergies or sensitivities to light, smells, touch, sound, foods, chemicals and medications, gastrointestinal changes such as nausea, bloating, constipation, diarrhoea, urinary problems, sore throat, tender lymph nodes and a flu-like feeling, marked weight change extreme loss or gain, inability to cope with temperature changes.
- #3 About the Disease – Solve ME/CFS Initiativehttps://solvecfs.org/me-cfs-long-covid/about-the-disease/
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, complex, neuroimmune disease that profoundly limits the health and productivity of patients and, like Long Covid, is often triggered by an infection. […] At this time, the cause of ME/CFS is not fully understood. There is no diagnostic test, cure, nor FDA-approved treatments or drugs for ME/CFS, and patients often suffer for life. […] ME/CFS symptoms, which can often be made worse by standing upright, include: Post-exertional malaise (PEM), the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks. Persistent fatigue for six months or more. Non-restorative sleep/sleep disturbance. Brain fog/cognitive impairment. Joint pain. Inflamed lymph nodes. Neurological abnormalities. Complete organ system shutdown. Sensitivity to light, sound, odors, chemicals, foods, and medications. Headaches. Migraine. Dizziness. Muscle Pain. Sore Throat.
- #3 Patient education: Myalgic encephalomyelitis/chronic fatigue syndrome (Beyond the Basics) – UpToDatehttps://www.uptodate.com/contents/myalgic-encephalomyelitis-chronic-fatigue-syndrome-beyond-the-basics
Persistent fatigue that can be overwhelming is a hallmark of chronic fatigue syndrome (CFS). The fatigue may develop suddenly, often after an infection such as an upper respiratory infection (eg, the common cold or flu) or mononucleosis („mono”). However, in some people, fatigue may develop gradually over several months. The fatigue can produce substantial impairment in your ability to function at home or at work, is not substantially relieved by resting, and must be present for more than six months in order to be diagnosed as CFS. […] Other important features include: Post-exertional malaise â This is the term for a prolonged worsening of symptoms after certain stressors such as physical exertion, using a lot of mental energy (for example, doing your taxes), or standing for a long time. Unrefreshing sleep â This is typically characterized by awakening feeling unrefreshed nearly every morning. Memory and concentration problems. Orthostatic intolerance â This is when symptoms worsen when you stand up and maintain an upright posture and improve (though not necessarily resolve) when you lie down.
- #3 What is ME? – #MEAction Networkhttps://www.meaction.net/learn/what-is-me/
Myalgic encephalomyelitis (ME) or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is a complex chronic disease that presents with symptoms in multiple body systems. ME is a neurological disease according to the World Health Organization. […] The cardinal symptom of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion. PEM is a flare of symptoms and/or the appearance of new symptoms after exertion, often presenting ~24 hours after the triggering event. […] People with ME experience a substantial loss of physical and/or cognitive function. The average person with ME scores as more disabled on quality of life surveys than those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure, and cancer. […] ME is a relapsing-remitting condition. Individual patients experience significant fluctuations in their well-being from day to day, week to week, and month to month.
- #3 Myalgic Encephalomyelitis: Causes, Symptoms, and Treatmenthttps://patient.info/doctor/myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs-pro
Definitions of severity are not clear-cut because individual symptoms vary widely in severity, and people may have some symptoms more severely than others. […] Mild ME/CFS: able to care for themselves and do some light domestic tasks (sometimes needing support) but may have difficulties with mobility. […] Moderate ME/CFS: reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. […] Severe ME/CFS: unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). […] Very severe ME/CFS: remain in bed all day and dependent on care. […] ME/CFS in children and adolescents is characterised by overwhelming fatigue with a substantial loss of physical and mental stamina.
- #3 Long COVID, ME/CFS and the Importance of Studying Infection-Associated Illnesses > News > Yale Medicinehttps://www.yalemedicine.org/news/long-covid-mecfs-and-the-importance-of-studying-infection-associated-illnesses
Research has shown that ME/CFS involves dysfunction of the immune and nervous systems, as well as cardiovascular, connective tissue, gastrointestinal, metabolic, and mitochondrial dysfunction. […] ME/CFS is characterized by prolonged and severe fatigue, and by symptoms that worsen after physical or cognitive exertion (known as post-exertional malaise, or PEM), sleep disturbances, brain fog/difficulty thinking, dizziness and orthostatic intolerance, headaches, muscle weakness and pain, and more. […] Studies over the last few years have found that about half of people with Long COVID meet diagnostic criteria for ME/CFS, and the prevalence of ME/CFS has been growing as a result of the pandemic and Long COVID. […] Fatigue is a hallmark of ME/CFS and Long COVID. […] ME/CFS is a severe, disabling, and life-altering disease: 75% of ME/CFS patients are too ill to work, and a quarter of patients are unable to leave their homes or, in some cases, their beds.
- #3 Chronic Fatigue Syndrome (CFS) Causes – Who Gets It and Whyhttps://www.webmd.com/chronic-fatigue-syndrome/what-is-chronic-fatigue-syndrome
ME/CFS often, but not always, begins with a sudden infectious-like illness (fever, sore throat, aching muscles, upset stomach). […] Several studies indicate that serotonin, a major brain chemical, plays an important role in ME/CFS symptoms. People with the illness have low levels of cortisol, a hormone the body releases in response to stress.
- #3 Myalgic Encephalomyelitis: Causes, Symptoms, and Treatmenthttps://patient.info/doctor/myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs-pro
Diagnosing ME/CFS remains a challenge. Patients often struggle with their illness for years before an identification is made. Once diagnosed, patients often complain of receiving hostility from their healthcare provider as well as being subjected to treatment strategies that exacerbate their symptoms. […] 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. […] Approximately 50-80% of people with ME/CFS start suddenly with a flu-like illness. […] ME/CFS is often found after infection by a virus, bacterium, or parasite, suggesting an immunological dysfunction, accompanied by a strong genetic predisposition, as shown in twin analysis.
- #3https://www.painscale.com/article/progression-and-potential-complications-of-myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a condition characterized by extreme fatigue, difficulty concentrating, memory issues, trouble sleeping, muscle or joint aches, and other symptoms. These symptoms often worsen after physical or mental activity, which is known as post-exertional malaise (PEM). […] ME/CFS typically develops after a specific occurrence (e.g., an infection or illness, a stressful event or time period, or exposure to environmental toxins, such as mold). The symptoms may be sporadic at first and then progress to more consistent illness. The pace of progression ranges from rapid (days) to gradual (years). […] For the majority of individuals with ME/CFS, symptoms dont ever completely go away; they often fluctuate in severity but are always present. However, some people with ME/CFS may have periods in which symptoms subside, called remission, and periods in which they return, called relapse. A remission period can last for several months. Individuals who do not experience remission may have symptoms that remain relatively consistent or worsen. […] There is no cure for ME/CFS. However, treatments can help reduce symptoms and improve quality of life.
- #3 Living with ME/CFS | Ausmedhttps://www.ausmed.com/learn/articles/chronic-fatigue-syndrome
These symptoms may fluctuate from hour to hour (Better Health Channel 2022). […] At least 25% of people living with ME/CFS are housebound or bed-bound due to severe symptoms (Emerge Australia n.d.a). […] Depending on the severity of their illness, people with ME/CFS may have difficulty: Performing daily tasks (e.g. having a shower or cooking), Keeping a job, attending school and participating in family and social life, Functioning the way they used to, Leaving the house (CDC 2024a; Better Health Channel 2022). […] Diagnosing ME/CFS often involves excluding other illnesses, as there is no single diagnostic test available (Better Health Channel 2022). […] As there is no cure for ME/CFS, treatment focuses on managing symptoms and optimising quality of life (Healthdirect 2024). […] People living with ME/CFS should never be pushed past their limits, as this can be harmful to their health (Better Health Channel 2022).
- #3https://111.wales.nhs.uk/encyclopaedia/m/article/myalgicencephalomyelitischronicfatiguesyndrome(mecfs)
Other symptoms of ME/CFS can include a sore throat or sore glands that are not swollen, flu-like symptoms, feeling dizzy or sick, and orthostatic intolerance. […] Most cases of ME/CFS are mild or moderate, but 1 in 4 people have severe symptoms. […] People with mild ME/CFS care for themselves and do some light domestic tasks but may have difficulties with mobility. […] People with moderate ME/CFS have reduced mobility and are restricted in all activities of daily living. […] People with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only. […] People with very severe ME/CFS are in bed all day and dependent on care. […] There may be times when your symptoms get worse. These periods are known as flare-ups or relapses. […] The symptoms of ME/CFS are similar to those of other conditions.
- #3 Chronic Fatigue Syndrome (Myalgic Encephalomyelitis): Practice Essentials, Background, Pathophysiologyhttps://emedicine.medscape.com/article/235980-overview
Recovery rates for patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are not well-documented, but early diagnosis and appropriate management may be influential. Some patients recover fully, whereas others show improvement but do not return to their pre-illness levels of function. […] Individuals with ME/CFS have a poor prognosis with low rates of recovery or improvement.
- #3 Patient education: Myalgic encephalomyelitis/chronic fatigue syndrome (Beyond the Basics) – UpToDatehttps://www.uptodate.com/contents/myalgic-encephalomyelitis-chronic-fatigue-syndrome-beyond-the-basics
To be diagnosed with CFS, the above symptoms must have been present for at least six months with moderate, substantial, or severe intensity at least one-half of the time. […] There is no cure for chronic fatigue syndrome (CFS); instead, the goal of treatment is to reduce symptoms of the illness and help improve your quality of life. Many therapies have been tried in CFS, but none have been consistently successful. […] Living with chronic fatigue syndrome (CFS) can be frustrating and stressful, as the symptoms can affect your quality of life. Most people who develop CFS were generally healthy and active previously, which can make it particularly distressing. […] The most important factor in your ability to successfully cope with CFS is establishing a strong relationship with an experienced health care provider. Having a provider you can trust, who listens to you and understands that your symptoms are real, can be validating and helpful.
- #3https://111.wales.nhs.uk/encyclopaedia/m/article/myalgicencephalomyelitischronicfatiguesyndrome(mecfs)
Energy management is a treatment that aims to teach you how to make best use of your energy levels in your day-to-day life, without making your symptoms worse. […] Cognitive behavioural therapy (CBT) aims to help you live with your symptoms. […] There’s no specific medicine for treating ME/CFS, but medicine can be used to relieve some of the symptoms. […] You may have sleep problems that make your ME/CFS symptoms worse. […] If you have severe ME/CFS and need to spend much of your time in bed, it can cause problems, including pressure sores and blood clots. […] A setback or relapse is when your symptoms get worse for a period of time.
- #3 COVID-19 may trigger chronic fatigue syndrome – Kaiser Permanente Division of Researchhttps://divisionofresearch.kaiserpermanente.org/covid-may-trigger-chronic-fatigue-syndrome/
A study following Kaiser Permanente Northern California (KPNC) patients with symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in 2022 found 14% of them developed symptoms after having COVID-19. […] The study explored the relationship between COVID-19 and ME/CFS, a debilitating condition that can include extreme fatigue, post-exertional malaise, sleep issues, and brain fog or dizziness. […] Overall, the researchers estimated that 1.67%, or 45,892, of 2.7 million adult KPNC members had ME/CFS-like syndrome during the study period, July to October 2022. Of those, 14.1% developed the illness after COVID-19. […] All the patients with ME/CFS-like illness had significant impairment in physical, mental, emotional, social, and occupational functioning compared with patients without the illness.
- #3 Myalgic encephalomyelitis/chronic fatigue syndrome – Wikipediahttps://en.wikipedia.org/wiki/Myalgic_encephalomyelitis/chronic_fatigue_syndrome
ME/CFS negatively impacts people’s social lives and relationships. […] Information on the prognosis of ME/CFS is limited. Complete recovery, partial improvement, and worsening are all possible, but full recovery is uncommon. […] Symptoms generally fluctuate over days, weeks, or longer periods, and some people may experience periods of remission.