Materiały źródłowe

• #1 ME/CFS Basics | ME/CFS | CDC

  https://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. […] Care usually means treating the symptoms that most affect a person’s life. […] 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. […] 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. […] Healthcare providers need to support their patients’ families as they come to understand how to live with this illness.

• #1 Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

  https://pmc.ncbi.nlm.nih.gov/articles/PMC8544443/

  Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can cause a wide range of severity and functional impairment, leaving some patients able to work while others are homebound or bedbound. […] The most severely ill patients may need total care. […] Yet, patients with severe or very severe ME/CFS struggle to receive appropriate medical care because they cannot travel to doctors offices and their doctors lack accurate information about the nature of this disease and how to diagnose and manage it. […] This article is intended to fill that gap. Based on published clinical guidance and clinical experience, we describe the clinical presentation of severe ME/CFS and provide patient-centered recommendations on diagnosis, assessment and approaches to treatment and management. […] This article is intended to fill the gap in clinical knowledge and guidance for severe and very severe ME/CFS in adults and reinforce the importance of compassion, humility, and respect in all clinical interactions.

• #1 About the Disease – Solve ME/CFS Initiative

  https://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. […] We know its so important to share personal experiences to increase understanding of ME/CFS.

• #1 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – Diagnosis and treatment – Mayo Clinic

  https://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). […] 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. […] Guidelines proposed by the United States Institute of Medicine define the fatigue associated with ME/CFS as being: So severe that it interferes with the ability to engage in pre-illness activities. […] There is no cure for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Treatment focuses on symptom relief. […] Some problems associated with ME/CFS can be improved with certain medicines. […] People with ME/CFS have a worsening of their symptoms after physical, mental or emotional effort. This is called post-exertional malaise.

• #1 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – Symptoms and causes – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490

  Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complicated disorder. […] 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. […] There’s no single test to confirm a diagnosis. You may need a variety of medical tests to rule out other health problems that have similar symptoms. Treatment for the condition focuses on easing symptoms. […] 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.

• #1 Manage Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | ME/CFS | CDC

  https://www.cdc.gov/me-cfs/management/index.html

  People living with ME/CFS may find that everyday activities may be enough to cause a relapse or „crash”. […] Exercise is not a cure for ME/CFS. […] Standard exercise recommendations for healthy people can be harmful for patients with ME/CFS. However, it is important that patients with ME/CFS undertake activities that they can tolerate, as described above. […] Good sleep habits are important for all people, including those with ME/CFS. […] People might continue to feel unrefreshed even after the medications help them get a full night of sleep. […] People with ME/CFS often have deep pain in their muscles and joints. […] People with ME/CFS should always talk to their healthcare provider before trying any medication. […] Other pain management methods include stretching and movement therapies, gentle massage, heat, toning exercises, and water therapy.

• #1 ME/CFS Patient Education – Bateman Horne Center

  https://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. […] Recognizing comorbid conditions early, and treating them appropriately, may improve the patients health, function, and quality of life. […] ME/CFS is often thought of as an adult disease, but children (both adolescents and younger children) are diagnosed with ME/CFS. […] This disease is more common in adolescents than in younger children.

• #1 Manage Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | ME/CFS | CDC

  https://www.cdc.gov/me-cfs/management/index.html

  Adjusting to a chronic, debilitating illness sometimes leads to depression, stress, and anxiety. […] If people with ME/CFS have depression or anxiety, they should be treated. […] Some people with ME/CFS might benefit from trying deep breathing, muscle relaxation and massage. […] Some people with ME/CFS might also have symptoms of orthostatic intolerance triggered — or made worse — when standing or sitting upright. […] Healthcare providers will often check the person’s heart rate and blood pressure to make sure nothing else is wrong. […] Tools like organizers and calendars can help people manage memory problems. […] Those with concentration problems may be prescribed stimulant medications, like those typically used to treat Attention-Deficit/Hyperactivity Disorder (ADHD).

• #1 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – Symptoms and causes – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490

  Muscle or joint pain. […] Unrefreshing sleep. […] Some people with this condition have headaches, sore throats, and tender lymph nodes in the neck or armpits. […] Symptoms of ME/CFS can come and go, and often are triggered by physical activity or emotional stress. This can make it difficult for people to maintain a regular work schedule or to even take care of themselves at home. […] Many people may be too weak to get out of bed at different points during their illness. Some may need to use a wheelchair.

• #1 Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

  https://pmc.ncbi.nlm.nih.gov/articles/PMC8544443/

  The severity of specific symptoms and the level of functional impairment seen in ME/CFS can vary widely from person to person and over time. […] A given patient may experience a combination of symptoms of differing levels of severity—for instance, very severe cognitive and physical impairment coupled with somewhat less severe orthostatic intolerance. […] A mildly affected patient may be able to work or attend school with accommodations while the most severely affected patient may be bedbound and need total care. […] These are general categories intended to convey the wide spectrum of disease severity and functional impairment seen in ME/CFS. […] The clinical presentation of severe or very severe ME/CFS includes the features seen in those with milder disease, but some features are more prevalent, and all are much more extreme. […] Compounding the physical debility, patients with severe or very severe ME/CFS are often isolated, sometimes from their own families, and must deal with the complete loss of their former lives and all that defined them.

• #1 Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

  https://www.mdpi.com/2227-9032/9/10/1331

  The following assessments are particularly important for the person with severe or very severe ME/CFS: Evaluate the patient’s basic and instrumental activities of daily living (ADLs and IADLs). […] Because ME/CFS is often unrecognized clinically, people with severe or very severe ME/CFS have sometimes been stigmatized or misdiagnosed with a mental illness such as anorexia nervosa. […] Recommendations for treatment and management of severe or very severe ME/CFS must be individually tailored to each patient. […] This is especially true for people with very severe ME/CFS, for whom even basic ADLs may exceed their extreme energy limits. […] The health status of a severe or very severe ME/CFS patient can change over time, sometimes rapidly and potentially requiring hospitalization. […] Caring for such vulnerable patients requires a patient-centered, collaborative approach in all clinical interactions, one that is grounded in compassion, humility, and respect for the nature and severity of the patient’s disease.

• #1 Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

  https://pmc.ncbi.nlm.nih.gov/articles/PMC8544443/

  Primary care providers and other healthcare providers may not have seen patients with this level of severity before. […] A patient-centered, collaborative approach to care that is grounded in compassion and respect for the patient in all interactions will be of benefit to everyone. […] Plan for the need to see the patient in their home. […] Respect the nature and severity of the patients disease in all clinical interactions. […] Accept the validity of the patients report of symptoms. […] Partner closely with the caregiver, if one is involved, and if needed, other healthcare professionals to provide the resources, services, education, and practical help needed by the patient and caregiver. […] In addition to the diagnostic approaches used for all ME/CFS patients, the following assessments are particularly important for the person with severe or very severe ME/CFS: Evaluate the patients basic and instrumental activities of daily living (ADLs and IADLs). […] Assess the patients individual energy limits (their energy envelope) and the energy they expend on ADLs and IADLs. […] Investigate medical issues that may be impacting the patients symptom burden or level of functioning.

• #1 Patient education: Myalgic encephalomyelitis/chronic fatigue syndrome (Beyond the Basics) – UpToDate

  https://www.uptodate.com/contents/myalgic-encephalomyelitis-chronic-fatigue-syndrome-beyond-the-basics

  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. […] General approach — 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.

• #1

  https://journals.lww.com/nursingmanagement/fulltext/2020/10000/chronic_fatigue_syndrome.4.aspx

  The fatigue of CFS isn’t relieved by sleep due to disturbances in sleep rhythm or quantity. […] Like patients with other chronic illnesses, patients with CFS may experience depression and anxiety as they deal with a chronic disease. However, it’s important to note that CFS is a biologic, not a psychologic, illness. […] Diagnosis is based on the patient’s signs and symptoms and the exclusion of other disorders. […] To date, no treatments for CFS have been proven effective in large randomized trials. […] The main goal of treatment is helping patients improve their quality of life through symptom relief. […] Nurses caring for patients with CFS should keep these points in mind: Patients may need additional assistance with activities of daily living and take more time to recover from surgery and other medical procedures, as well as any kind of emotional or mental stress. […] It’s important for nurses to be advocates for patients with CFS by acknowledging the significant and ongoing impact that the disease has on their lives and validating their experience and concerns.

• #1 4. Interventions, management and rehabilitation – Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME-CFS): good practice statement – gov.scot

  https://www.gov.scot/publications/scottish-good-practice-statement-myalgic-encephalomyelitis-chronic-fatigue-syndrome-cfs/pages/5/

  It is vital that those who are helping to support and care for the patient with ME-CFS are given advice on how to help maintain physical functioning and mobility. […] When considering strategies to help maintain and prevent deterioration of physical functioning and mobility in the care and support plan it is important that these are in small amounts and spaced throughout the day. […] It is important to be aware that those with severe to very severe ME-CFS and those with long periods of immobility will need assessed for the following at each clinical review: Pressure ulcers, Deep vein thrombosis, Risk of contractures. […] It is important that education or training is not the only activity the child or young person takes part in. They should aim to find a balance between education, family and social activities. […] Speedy diagnosis of ME-CFS is important to allay fears of other serious illness, to protect the patient from undue pressure and to allow symptom control and appropriate management to begin.

• #1 Manage Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | ME/CFS | CDC

  https://www.cdc.gov/me-cfs/management/index.html

  Healthcare providers need to support their patients’ families as they come to understand how to live with this life-altering illness. Providers and families should also remember that this process might be extremely difficult for people with ME/CFS. […] PEM can be addressed by activity management, also called pacing. The goal of pacing is to learn to balance activity and rest to avoid PEM flare-ups. […] People with ME/CFS have different limits for physical or mental activity, compared to others without the disease. […] Keeping activity and symptom diaries may help them find their personal limits, especially early in their illness. […] Being mindful of personal limits can help people with ME/CFS cope with their illness. It can help them feel like they are managing the illness, rather than the illness controlling them.

• #1 Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

  https://pmc.ncbi.nlm.nih.gov/articles/PMC8544443/

  Historically, the debility of ME/CFS was incorrectly assumed to be the result of deconditioning that could be treated with graded exercise therapy. […] However, studies have demonstrated that ME/CFS is not deconditioning and that overexertion can cause harm to patients. […] This is especially true for people with very severe ME/CFS, for whom even basic ADLs may exceed their extreme energy limits. […] The following approaches can be used to help manage post-exertional malaise and sensory sensitivities: Ensure the patient and caregiver understand post-exertional malaise. […] Minimize those stimuli to which the patient is sensitive, such as light, noise, touch, movement, chemicals, and odors. […] Accommodate the patients restricted energy. […] Caring for such vulnerable patients requires a patient-centered, collaborative approach in all clinical interactions, one that is grounded in compassion, humility, and respect for the nature and severity of the patients disease. […] Using these approaches, the primary care provider can make a significant difference in the lives of these underserved patients.

• #1

  https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/treatment/

  There are a number of specialist treatments for ME/CFS. […] 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. […] Some people with ME/CFS have found that exercise programmes can make their symptoms better. […] If you think you would benefit from increased levels of exercise you should be offered a personalised plan with support from a healthcare professional (such as a physiotherapist) with experience in working with people with ME/CFS. […] Graded exercise therapy (GET), which aims to gradually increase physical activity levels, is not recommended for people with ME/CFS. […] Your doctor may discuss with you whether cognitive behavioural therapy (CBT) is a suitable option.

• #1 4. Interventions, management and rehabilitation – Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME-CFS): good practice statement – gov.scot

  https://www.gov.scot/publications/scottish-good-practice-statement-myalgic-encephalomyelitis-chronic-fatigue-syndrome-cfs/pages/5/

  Give honest, realistic information about ME-CFS at diagnosis. Encourage cautious optimism. […] Facilitate discussion about the patient’s acceptance of the diagnosis and the attitudes of other people in their life to the diagnosis. […] Offer advice on control of specific symptoms. […] Offer support and monitoring; listening, interpreting, guiding. […] Discuss the possibility of setbacks or more serious relapses and plan for how they might best be coped with. […] Support strategies with appropriate literature when available. […] In general terms, it is usually beneficial to start with very low doses of medicines and then steadily increase over time. […] Pain is often problematic. […] The importance of a good sleep pattern should not be underestimated. […] The prognosis is variable. The majority of patients will show some degree of improvement over time, especially with treatment, although many will pursue a fluctuating course with periods of relative remission and relapse.

• #1

  https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/treatment/

  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. […] Painkillers you buy from a pharmacy or supermarket can help ease headaches, as well as muscle and joint pain. […] Antidepressants can be useful for people with ME/CFS who are in pain or having trouble sleeping. […] As well as specialist treatments for ME/CFS, making lifestyle changes can also help. […] You should be offered practical advice about how to achieve this if, for example, your ME/CFS symptoms are making it difficult for you to shop or prepare food. […] You may be referred to a dietitian who has experience of working with people with ME/CFS. […] You should be given advice about how to establish a normal sleeping pattern.

• #1 Myalgic encephalomyelitis/chronic fatigue syndrome – Wikipedia

  https://en.wikipedia.org/wiki/Myalgic_encephalomyelitis/chronic_fatigue_syndrome

  ME/CFS has a large social and economic impact, and the disease can be socially isolating. About a quarter of those affected are unable to leave their bed or home. People with ME/CFS often face stigma in healthcare settings, and care is complicated by controversies around the cause and treatments of the illness. […] Care for ME/CFS involves multidisciplinary healthcare professionals. Usually, the primary care clinician plays an important role in coordinating health care, social care and educational support for those still in school. This coordinator can help provide access to community resources such as occupational therapy and district nursing. Management may start with treating the most disabling symptom first, and tackle symptoms one by one in further health care visits. […] Pacing, or managing one’s activities to stay within energy limits, can reduce episodes of PEM. Addressing sleep problems with good sleep hygiene, or medication if required, may be beneficial. Chronic pain is common in ME/CFS, and the CDC recommends consulting with a pain management specialist if over-the-counter painkillers are insufficient.

• #1 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Care Instructions | Kaiser Permanente

  https://healthy.kaiserpermanente.org/health-wellness/health-encyclopedia/he.myalgic-encephalomyelitis-chronic-fatigue-syndrome-care-instructions.uh4339

  If you have problems with your ability to think, remember, or concentrate, you may try finding ways to simplify your daily tasks. […] Consider joining a support group with other people who have ME/CFS. These groups can be a good source of information and tips for what to do to feel better. […] Consider going to counseling. It can help you learn to cope with ME/CFS. […] Watch closely for changes in your health, and be sure to contact your doctor if your fatigue continues to get worse. […] Your use of this information means that you agree to the Terms of Use and Privacy Policy.

• #1 Understanding Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in the School-aged child – Considerations for School Nurses

  https://www.massmecfs.org/nurse-patti-s-blog/765-patti-s-blog-1

  The school nurse is instrumental in educating teachers, administrators and other school personnel of the educational challenges brought on by ME/CFS and issues with OI (orthostatic intolerance) that accompany the disease. […] In summary, Pediatric ME/CFS is a disease associated with substantial impairment of normal activities that impact a young persons entire life. Coping with debilitating medical symptoms, changed relationships within the family, absence from school and loss of socializing with peers can all result from the illness causing extreme confusion and crisis. Many of the symptoms of ME/CFS are amenable to specific therapies and accommodations. Successful management is based on determining the optimum balance of rest and activity to help prevent post-exertional symptom worsening. Medications are helpful to treat pain, insomnia OI and other symptoms. School nurses can help improve recognition, identify comorbid conditions, provide emotional support and encouragement, and suggest reasonable accommodations.

• #1 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | Kaiser Permanente

  https://healthy.kaiserpermanente.org/health-wellness/health-encyclopedia/he.myalgic-encephalomyelitis-chronic-fatigue-syndrome.hw32907

  Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disease that causes you to feel so ill that you can’t do your normal activities. […] There isn’t a cure yet for ME/CFS. So the keys to living with ME/CFS are learning how to pace your activities and treating your symptoms. […] The most common ME/CFS symptoms can also be the most treatable. […] When you have ME/CFS, you may not be able to do the things you would like to do. This may lead to feelings of frustration and anxiety. It can also lead to depression. […] An ME/CFS support group can be a good source of information and tips for managing your illness. It also gives you a chance to share your frustrations and problems with others who have ME/CFS. […] Visit your doctor every few months to help track your symptoms and check for any need to change your treatment. […] Medicines don’t cure ME/CFS. But they can help relieve your symptoms. […] Along with daily self-care and the treatment you get from your doctor, you might find that other treatments help too.

• #1 Myalgic Encephalomyelitis  | PM&R KnowledgeNow

  https://now.aapmr.org/myalgic-encephalomyelitis/

  Education on the disease process and PEM phenomenon are important aspects of helping patients not only feel validated in their experience but also assist in improving quality of life and preventing acute exacerbations. Patient self-management guides and handouts are available to download freely and such use should be encouraged.

• #1 Myalgic encephalomyelitis (Chronic fatigue syndrome) – Symptoms, diagnosis and treatment | BMJ Best Practice

  https://bestpractice.bmj.com/topics/en-gb/277

  Primary care clinicians play a key role in management of patients with ME/CFS, typically retaining responsibility for long-term care and monitoring, in partnership with the ME/CFS specialist team in secondary care. […] Newer diagnostic criteria emphasise the importance of PEM as a key, defining feature of ME/CFS. […] Symptoms of PEM include fatigue, headaches, muscle aches, cognitive deficits, and insomnia. […] Patients are often limited to a few hours per day of productive endeavours, with the remainder of the time spent resting with slow and partial recovery of their debilitating symptoms.

• #1 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | Cigna

  https://www.cigna.com/knowledge-center/hw/medical-topics/myalgic-encephalomyelitis-chronic-fatigue-syndrome-hw32907

  Get specialized care if you need it. For example: A rehabilitation specialist can help you treat pain and improve your ability to do your daily tasks. […] Consider going to counseling. It can help you learn to cope with ME/CFS. It may also help to work with a professional counselor who understands ME/CFS.

• #1

  https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/treatment/

  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. […] There may be equipment you can use to help with daily living, such as a wheelchair or a stairlift. […] You should not take up vigorous unsupervised exercise, such as going to the gym or for a run as this may make your symptoms worse. […] A setback or relapse is when your symptoms get worse for a period of time. […] The doctors treating you can help you manage a setback or relapse by including more breaks with your current levels of activities.

• #1

• #1 Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

  https://www.mdpi.com/2227-9032/9/10/1331

  A patient-centered, collaborative approach to care that is grounded in compassion and respect for the patient in all interactions will be of benefit to everyone. […] The following approaches can help: Plan for the need to see the patient in their home. […] Respect the nature and severity of the patient’s disease in all clinical interactions. […] Accept the validity of the patient’s report of symptoms. […] Partner closely with the caregiver, if one is involved, and if needed, other healthcare professionals to provide the resources, services, education, and practical help needed by the patient and caregiver. […] Be alert to caregiver stress. […] Some severely ill ME/CFS patients may not have caregivers. Be alert to their non-medical needs, such as their ability to obtain and prepare food.

• #1 4. Interventions, management and rehabilitation – Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME-CFS): good practice statement – gov.scot

  https://www.gov.scot/publications/scottish-good-practice-statement-myalgic-encephalomyelitis-chronic-fatigue-syndrome-cfs/pages/5/

  Acknowledge the reality of the patient’s symptoms and the impact on their life. […] Share decision-making with the patient. […] Be explicit about diagnosis and co-morbidity (if relevant). […] Explain the possible causes, nature and fluctuating course of the illness, together with possible management options (benefits/risks), taking account of the person’s age and the stage, severity and variability of their illness. […] Explore the range of management options that can be utilised, as appropriate to the particular patient’s condition. […] Offer information on other sources of support (e.g. national charities, local groups and services). […] Involve family members and care givers (where appropriate) when discussing care plans. […] The following are usually helpful areas to discuss: Diagnosis: A clear diagnosis, with an explanation of why the diagnosis has been made in the particular patient’s case, can be helpful and therapeutic.

• #1 Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – PubMed

  https://pubmed.ncbi.nlm.nih.gov/34683011/

  Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can cause a wide range of severity and functional impairment, leaving some patients able to work while others are homebound or bedbound. […] The most severely ill patients may need total care. […] Yet, patients with severe or very severe ME/CFS struggle to receive appropriate medical care because they cannot travel to doctors’ offices and their doctors lack accurate information about the nature of this disease and how to diagnose and manage it. […] Recently published clinical guidance provides updated information about ME/CFS but advice on caring for the severely ill is limited. […] This article is intended to fill that gap. […] Based on published clinical guidance and clinical experience, we describe the clinical presentation of severe ME/CFS and provide patient-centered recommendations on diagnosis, assessment and approaches to treatment and management.

• #1 The ‘all in the mind’ myth of myalgic encephalomyelitis/chronic fatigue syndrome | Nursing in Practice | 27 June 2016 – The ME Association

  https://meassociation.org.uk/2016/06/the-all-in-the-mind-myth-of-myalgic-encephalomyelitischronic-fatigue-syndrome-nursing-in-practice-27-june-2016/

  Health professionals should be made aware that ME/CFS is not a psychological illness and in order to improve patient care, nurses need to better understand this illness and its impact on patients. […] Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is one illness that nurses may encounter that causes profound life changes for many sufferers. […] This controversial illness is sometimes presented as a psychosomatic disorder that requires psychological treatment. However, there is no compelling evidence that ME/CFS is a mental health condition and increasing evidence shows it is a biological disease with a range of complex symptoms. […] The US National Institutes for Health confirmed ME/CFS as a disabling physical illness and stated that the medical profession has been responsible for causing distress to patients with ME/CFS by ignoring patients calls for medical help and failing to adequately research the disease.

• #1 The ‘all in the mind’ myth of myalgic encephalomyelitis/chronic fatigue syndrome | Nursing in Practice | 27 June 2016 – The ME Association

  https://meassociation.org.uk/2016/06/the-all-in-the-mind-myth-of-myalgic-encephalomyelitischronic-fatigue-syndrome-nursing-in-practice-27-june-2016/

  In the absence of a cure for ME/CFS, nurses are well placed to provide supportive care. […] By understanding the symptoms generated by the illness, nurses may be able to offer patients better care. […] Nurses should not underestimate the power and importance of the nursing position to relieve suffering, prevent harm and promote better care for ME/CFS patients.

• #1 Patient education: Myalgic encephalomyelitis/chronic fatigue syndrome (Beyond the Basics) – UpToDate

  https://www.uptodate.com/contents/myalgic-encephalomyelitis-chronic-fatigue-syndrome-beyond-the-basics

  Patient education: 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. […] 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.

• #1 Manage Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | ME/CFS | CDC

  https://www.cdc.gov/me-cfs/management/index.html

  There is no cure or approved treatment for myalgic encephalomyelitis/chronic fatigue syndrome. […] However, some symptoms can be treated or managed. […] Taking these actions may provide some relief for people’s worst symptoms and improve quality of life. […] Unfortunately, these strategies may not be effective for everyone who has ME/CFS. […] ME/CFS is a particularly difficult disease to treat or manage because its cause remains unknown. Treatment is also complicated by the fact that the disease affects people differently. So, there is no one-size-fits-all solution to managing the disease. […] People with ME/CFS, their families, and healthcare providers need to work together to decide which symptom causes the most problems. This should be treated first. […] Before starting a management plan, people with ME/CFS, their families, and healthcare providers should also discuss the treatment. This discussion should include the possible benefits and harms of any treatment plans, including medicines and other therapies.

• #1 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/diagnosis-treatment/drc-20360510

  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. […] If you have signs and symptoms of ME/CFS, you’re likely to start by seeing your family’s health care professional.

• #1 4. Interventions, management and rehabilitation – Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME-CFS): good practice statement – gov.scot

  https://www.gov.scot/publications/scottish-good-practice-statement-myalgic-encephalomyelitis-chronic-fatigue-syndrome-cfs/pages/5/

  Patient support and wellbeing are key all patients will benefit from the general skills of good medical practice including being treated with respect, being listened to with empathy, and having the opportunity to build a rapport with their general practitioner. […] In general clinicians should adopt a holistic approach in treating the symptoms of ME-CFS. No single treatment has yet been shown to be consistently effective. However, various rehabilitative approaches have often been found to be beneficial in modifying symptoms of this illness in some patients, and assisting the recovery process. […] What works for one patient may not work for another and therefore it is crucial to tailor interventions to the needs and circumstances of the individual patient. […] A standard approach to management will involve: It is important to give advice and support from the outset, even in the absence of a firm diagnosis.

• #1 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – Hancock Health

  https://www.hancockhealth.org/mayo-health-library/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs/

  Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complicated disorder. […] Treatment for the condition focuses on easing symptoms. […] Symptoms of ME/CFS can come and go, and often are triggered by physical activity or emotional stress. This can make it difficult for people to maintain a regular work schedule or to even take care of themselves at home. […] 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. […] Many alternative therapies have been promoted for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), but very few have evidence that they work.

• #1 Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

  https://www.mdpi.com/2227-9032/9/10/1331

  This article is intended to fill the gap in clinical knowledge and guidance for severe and very severe ME/CFS in adults and reinforce the importance of compassion, humility, and respect in all clinical interactions. Using already existing interventions and resources, primary care providers and other healthcare professionals can meet patients where they are in their sickness and potentially significantly improve their health, quality of life, and function. […] The clinical presentation of severe or very severe ME/CFS includes the features seen in those with milder disease, but some features are more prevalent, and all are much more extreme. […] Compassionate, high-quality clinical care can help improve the quality of life, decrease the overall symptom burden, and prevent a worsening of the disease.

• #2 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – Symptoms and causes – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490

  Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complicated disorder. […] 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. […] There’s no single test to confirm a diagnosis. You may need a variety of medical tests to rule out other health problems that have similar symptoms. Treatment for the condition focuses on easing symptoms. […] 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.

• #2 About the Disease – Solve ME/CFS Initiative

  https://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. […] We know its so important to share personal experiences to increase understanding of ME/CFS.

• #2 Manage Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | ME/CFS | CDC

  https://www.cdc.gov/me-cfs/management/index.html

  There is no cure or approved treatment for myalgic encephalomyelitis/chronic fatigue syndrome. […] However, some symptoms can be treated or managed. […] Taking these actions may provide some relief for people’s worst symptoms and improve quality of life. […] Unfortunately, these strategies may not be effective for everyone who has ME/CFS. […] ME/CFS is a particularly difficult disease to treat or manage because its cause remains unknown. Treatment is also complicated by the fact that the disease affects people differently. So, there is no one-size-fits-all solution to managing the disease. […] People with ME/CFS, their families, and healthcare providers need to work together to decide which symptom causes the most problems. This should be treated first. […] Before starting a management plan, people with ME/CFS, their families, and healthcare providers should also discuss the treatment. This discussion should include the possible benefits and harms of any treatment plans, including medicines and other therapies.

• #2 Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – PubMed

  https://pubmed.ncbi.nlm.nih.gov/34683011/

  Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can cause a wide range of severity and functional impairment, leaving some patients able to work while others are homebound or bedbound. […] The most severely ill patients may need total care. […] Yet, patients with severe or very severe ME/CFS struggle to receive appropriate medical care because they cannot travel to doctors’ offices and their doctors lack accurate information about the nature of this disease and how to diagnose and manage it. […] Recently published clinical guidance provides updated information about ME/CFS but advice on caring for the severely ill is limited. […] This article is intended to fill that gap. […] Based on published clinical guidance and clinical experience, we describe the clinical presentation of severe ME/CFS and provide patient-centered recommendations on diagnosis, assessment and approaches to treatment and management.

• #2 Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

  https://www.mdpi.com/2227-9032/9/10/1331

  Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome […] Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can cause a wide range of severity and functional impairment, leaving some patients able to work while others are homebound or bedbound. The most severely ill patients may need total care. Yet, patients with severe or very severe ME/CFS struggle to receive appropriate medical care because they cannot travel to doctors’ offices and their doctors lack accurate information about the nature of this disease and how to diagnose and manage it. […] This article is intended to fill that gap. Based on published clinical guidance and clinical experience, we describe the clinical presentation of severe ME/CFS and provide patient-centered recommendations on diagnosis, assessment and approaches to treatment and management.

• #2 Chronic fatigue syndrome (CFS) | Better Health Channel

  https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs

  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%. […] While there is currently no cure and no evidence-based treatments, it is important to find a doctor who is not only sympathetic to ME/CFS, but can work with you to help manage your symptoms. […] Pacing, or keeping within your available energy, is a self-management strategy to help people with ME/CFS make sure that they dont overdo activity or exercise. […] 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. […] Having a supportive community of family, friends, school, work, employers and health workers, who understand the potential seriousness of ME/CFS, can also help improve the quality of life of people living with ME/CFS.

• #2 Myalgic encephalomyelitis/chronic fatigue syndrome – Wikipedia

  https://en.wikipedia.org/wiki/Myalgic_encephalomyelitis/chronic_fatigue_syndrome

  Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling chronic illness. People with ME/CFS experience profound fatigue that does not go away with rest, as well as sleep issues and problems with memory or concentration. The hallmark symptom is post-exertional malaise, a worsening of the illness which can start immediately or hours to days after even minor physical or mental activity. This „crash” can last from hours or days to several months. Further common symptoms include dizziness or faintness when upright and pain. […] Diagnosis is based on symptoms and a differential diagnosis because no diagnostic test such as a blood test or imaging is available. […] Symptoms of ME/CFS can sometimes be treated and the illness can improve or worsen over time, but a full recovery is uncommon. No therapies or medications are approved to treat the condition, and management is aimed at relieving symptoms. Pacing of activities can help avoid worsening symptoms, and counselling may help in coping with the illness.

• #2

  https://journals.lww.com/nursingmanagement/fulltext/2020/10000/chronic_fatigue_syndrome.4.aspx

  Chronic fatigue syndrome (CFS) is a long-term, often misunderstood disorder that affects multiple body systems. This article describes the pathophysiology, signs and symptoms, diagnostic criteria, and nursing considerations for adult patients with CFS. […] CFS affects more women than men and is more likely to occur in middle age, although it can happen at any age, including childhood. […] The hallmark of CFS is debilitating fatigue that doesn’t improve with rest and can’t be explained by an underlying medical disorder. […] In CFS, fatigue may be severe enough to prevent the patient from conducting normal daily activities or even getting out of bed. […] A characteristic of the fatigue associated with CFS is that it may flare up after even light physical, emotional, or cognitive effort—a phenomenon called postexertional malaise (PEM).

• #2 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – Symptoms and causes – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/symptoms-causes/syc-20360490

  Muscle or joint pain. […] Unrefreshing sleep. […] Some people with this condition have headaches, sore throats, and tender lymph nodes in the neck or armpits. […] Symptoms of ME/CFS can come and go, and often are triggered by physical activity or emotional stress. This can make it difficult for people to maintain a regular work schedule or to even take care of themselves at home. […] Many people may be too weak to get out of bed at different points during their illness. Some may need to use a wheelchair.

• #2 ME/CFS Patient Education – Bateman Horne Center

  https://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. […] Recognizing comorbid conditions early, and treating them appropriately, may improve the patients health, function, and quality of life. […] ME/CFS is often thought of as an adult disease, but children (both adolescents and younger children) are diagnosed with ME/CFS. […] This disease is more common in adolescents than in younger children.

• #2 Myalgic encephalomyelitis / chronic fatigue syndrome » Global Autoimmune Institute

  https://www.autoimmuneinstitute.org/autoimmune-resources/autoimmune-diseases-list/me-cfs/

  Typically, memory issues or orthostatic intolerance (exacerbation of symptoms when standing upright) are also included in the diagnostic criteria. […] Other symptoms include muscle pain, joint pain, headaches, tender lymph nodes in the neck/armpits, recurring sore throat, digestive problems, chills and night sweats, allergies, muscle weakness, shortness of breath, irregular heartbeat, and sensitivity to food, odors, noise, light, or chemicals. […] Symptom management is the current care strategy for most patients.

• #2 Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

  https://www.mdpi.com/2227-9032/9/10/1331

  This article is intended to fill the gap in clinical knowledge and guidance for severe and very severe ME/CFS in adults and reinforce the importance of compassion, humility, and respect in all clinical interactions. Using already existing interventions and resources, primary care providers and other healthcare professionals can meet patients where they are in their sickness and potentially significantly improve their health, quality of life, and function. […] The clinical presentation of severe or very severe ME/CFS includes the features seen in those with milder disease, but some features are more prevalent, and all are much more extreme. […] Compassionate, high-quality clinical care can help improve the quality of life, decrease the overall symptom burden, and prevent a worsening of the disease.

• #2 Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

  https://www.mdpi.com/2227-9032/9/10/1331

  A patient-centered, collaborative approach to care that is grounded in compassion and respect for the patient in all interactions will be of benefit to everyone. […] The following approaches can help: Plan for the need to see the patient in their home. […] Respect the nature and severity of the patient’s disease in all clinical interactions. […] Accept the validity of the patient’s report of symptoms. […] Partner closely with the caregiver, if one is involved, and if needed, other healthcare professionals to provide the resources, services, education, and practical help needed by the patient and caregiver. […] Be alert to caregiver stress. […] Some severely ill ME/CFS patients may not have caregivers. Be alert to their non-medical needs, such as their ability to obtain and prepare food.

• #2 The ‘all in the mind’ myth of myalgic encephalomyelitis/chronic fatigue syndrome | Nursing in Practice | 27 June 2016 – The ME Association

  https://meassociation.org.uk/2016/06/the-all-in-the-mind-myth-of-myalgic-encephalomyelitischronic-fatigue-syndrome-nursing-in-practice-27-june-2016/

  Health professionals should be made aware that ME/CFS is not a psychological illness and in order to improve patient care, nurses need to better understand this illness and its impact on patients. […] Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is one illness that nurses may encounter that causes profound life changes for many sufferers. […] This controversial illness is sometimes presented as a psychosomatic disorder that requires psychological treatment. However, there is no compelling evidence that ME/CFS is a mental health condition and increasing evidence shows it is a biological disease with a range of complex symptoms. […] The US National Institutes for Health confirmed ME/CFS as a disabling physical illness and stated that the medical profession has been responsible for causing distress to patients with ME/CFS by ignoring patients calls for medical help and failing to adequately research the disease.

• #2 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | Cigna

  https://www.cigna.com/knowledge-center/hw/medical-topics/myalgic-encephalomyelitis-chronic-fatigue-syndrome-hw32907

  When you have ME/CFS, you may not be able to do the things you would like to do. This may lead to feelings of frustration and anxiety. It can also lead to depression. Depression is not the same thing as ME/CFS. But it can make your ME/CFS symptoms worse. […] A good relationship with your doctor is important. That’s because the two of you will need to work together to find a mix of medicines and behavior changes that will help you get better. Some trial and error may be needed. That’s because no single combination of treatments works for everyone. […] The most common ME/CFS symptoms can also be the most treatable. […] Work with your doctor to watch for signs of depression. […] An ME/CFS support group can be a good source of information and tips for managing your illness. It also gives you a chance to share your frustrations and problems with others who have ME/CFS.

• #2 Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

  https://www.mdpi.com/2227-9032/9/10/1331

  The following assessments are particularly important for the person with severe or very severe ME/CFS: Evaluate the patient’s basic and instrumental activities of daily living (ADLs and IADLs). […] Because ME/CFS is often unrecognized clinically, people with severe or very severe ME/CFS have sometimes been stigmatized or misdiagnosed with a mental illness such as anorexia nervosa. […] Recommendations for treatment and management of severe or very severe ME/CFS must be individually tailored to each patient. […] This is especially true for people with very severe ME/CFS, for whom even basic ADLs may exceed their extreme energy limits. […] The health status of a severe or very severe ME/CFS patient can change over time, sometimes rapidly and potentially requiring hospitalization. […] Caring for such vulnerable patients requires a patient-centered, collaborative approach in all clinical interactions, one that is grounded in compassion, humility, and respect for the nature and severity of the patient’s disease.

• #2 ME/CFS Patient Education – Bateman Horne Center

  https://batemanhornecenter.org/education/me-cfs/

  Myalgic encephalomyelitis/chronic fatigue syndrome, commonly referred to as ME/CFS, is a disease characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort (physical, cognitive, emotional, orthostatic stressors). […] ME/CFS can severely impair a patients ability to conduct their normal lives, yet many struggle with symptoms for years before receiving a diagnosis. It is estimated that ME/CFS affects upwards of 3 million Americans, 80% of which remain undiagnosed, even after years of cycling through specialty care. […] The most important primary intervention for ME/CFS is activity management (pacing), which includes management of physical, cognitive, emotional, and orthostatic stressors.

• #2 Manage Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | ME/CFS | CDC

  https://www.cdc.gov/me-cfs/management/index.html

  Healthcare providers need to support their patients’ families as they come to understand how to live with this life-altering illness. Providers and families should also remember that this process might be extremely difficult for people with ME/CFS. […] PEM can be addressed by activity management, also called pacing. The goal of pacing is to learn to balance activity and rest to avoid PEM flare-ups. […] People with ME/CFS have different limits for physical or mental activity, compared to others without the disease. […] Keeping activity and symptom diaries may help them find their personal limits, especially early in their illness. […] Being mindful of personal limits can help people with ME/CFS cope with their illness. It can help them feel like they are managing the illness, rather than the illness controlling them.

• #2 Myalgic encephalomyelitis/chronic fatigue syndrome – Wikipedia

  https://en.wikipedia.org/wiki/Myalgic_encephalomyelitis/chronic_fatigue_syndrome

  The first management step for sleep problems in ME/CFS is improving sleep habits. If sleep problems remain after implementing sleep hygiene routines, cognitive behavioural therapy for insomnia can be offered. […] People with moderate to severe ME/CFS may benefit from home adaptations and mobility aids, such as wheelchairs, disability parking, shower chairs, or stair lifts. To manage sensitivities to environmental stimuli, these stimuli can be limited.

• #2

  https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/treatment/

  There are a number of specialist treatments for ME/CFS. […] 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. […] Some people with ME/CFS have found that exercise programmes can make their symptoms better. […] If you think you would benefit from increased levels of exercise you should be offered a personalised plan with support from a healthcare professional (such as a physiotherapist) with experience in working with people with ME/CFS. […] Graded exercise therapy (GET), which aims to gradually increase physical activity levels, is not recommended for people with ME/CFS. […] Your doctor may discuss with you whether cognitive behavioural therapy (CBT) is a suitable option.

• #2 5 Misconceptions About Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – CPET – Cardiopulmonary Exercise Test

  https://workwellfoundation.org/5-misconceptions-about-myalgic-encephalomyelitis-chronic-fatigue-syndrom/

  Many neurological symptoms are associated with ME/CFS, including muscle weakness and pain, joint pain, headaches, cognitive difficulties and sleep disturbances. […] Problems with the autonomic nervous system (e.g., parts that regulate heart rate and blood pressure) are also common in ME/CFS. […] While some people are bedridden or housebound, others might be able to work or attend school. […] A person with ME/CFS may experience fluctuations in symptom severity. […] Although ME/CFS cannot be cured, people with the disease can take steps to help lessen symptoms as much as possible. […] For instance, people can adopt a pacing/energy conservation strategy to reduce or prevent PEM. […] Individuals may also see slight improvements in function due by treating symptoms, which may help to determine if they can perform certain everyday activities.

• #2 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Care Instructions | Kaiser Permanente

  https://healthy.kaiserpermanente.org/health-wellness/health-encyclopedia/he.myalgic-encephalomyelitis-chronic-fatigue-syndrome-care-instructions.uh4339

  Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disease that causes you to feel so ill that you can’t do your normal daily activities. […] Your doctor can prescribe medicines that can help ease your symptoms. Your doctor can also help you learn to manage your energy. This can help you be as active as possible without overdoing it and causing your symptoms to get worse. […] Follow-up care is a key part of your treatment and safety. Be sure to make and go to all appointments, and call your doctor if you are having problems. […] Here are some steps you can take to control and sometimes relieve your ME/CFS symptoms. […] Manage your activity so that you can be as active as possible without causing your symptoms to get worse. […] If you have problems sleeping, try to improve your sleep habits.

• #2

  https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/treatment/

  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. […] Painkillers you buy from a pharmacy or supermarket can help ease headaches, as well as muscle and joint pain. […] Antidepressants can be useful for people with ME/CFS who are in pain or having trouble sleeping. […] As well as specialist treatments for ME/CFS, making lifestyle changes can also help. […] You should be offered practical advice about how to achieve this if, for example, your ME/CFS symptoms are making it difficult for you to shop or prepare food. […] You may be referred to a dietitian who has experience of working with people with ME/CFS. […] You should be given advice about how to establish a normal sleeping pattern.

• #2 Manage Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | ME/CFS | CDC

  https://www.cdc.gov/me-cfs/management/index.html

  People living with ME/CFS may find that everyday activities may be enough to cause a relapse or „crash”. […] Exercise is not a cure for ME/CFS. […] Standard exercise recommendations for healthy people can be harmful for patients with ME/CFS. However, it is important that patients with ME/CFS undertake activities that they can tolerate, as described above. […] Good sleep habits are important for all people, including those with ME/CFS. […] People might continue to feel unrefreshed even after the medications help them get a full night of sleep. […] People with ME/CFS often have deep pain in their muscles and joints. […] People with ME/CFS should always talk to their healthcare provider before trying any medication. […] Other pain management methods include stretching and movement therapies, gentle massage, heat, toning exercises, and water therapy.

• #2 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Information & Treatment

  https://www.columbiadoctors.org/health-library/condition/myalgic-encephalomyelitis-chronic-fatigue-syndrome/

  It’s common to also have depression or anxiety along with a chronic condition like ME/CFS. So you may also be referred to a psychologist, or psychiatrist for treatment. […] Get specialized care if you need it. For example: A rehabilitation specialist can help you treat pain and improve your ability to do your daily tasks. A pain management specialist can offer a number of pain treatments. […] Medicines don’t cure ME/CFS. But they can help relieve your symptoms.

• #2

  https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/treatment/

  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. […] There may be equipment you can use to help with daily living, such as a wheelchair or a stairlift. […] You should not take up vigorous unsupervised exercise, such as going to the gym or for a run as this may make your symptoms worse. […] A setback or relapse is when your symptoms get worse for a period of time. […] The doctors treating you can help you manage a setback or relapse by including more breaks with your current levels of activities.

• #2 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

  https://mentalhealth.networkofcare.org/luzerne-pa/HealthLibrary/Article?docType=na&articleId=hw32907

  It’s important to talk to your doctor about any symptoms you may have. […] While there are doctors who specialize in the treatment of ME/CFS, it is always wise to start with your family doctor and learn as much as you can about the illness. […] A good relationship with your doctor is important. That’s because the two of you will need to work together to find a mix of medicines and behavior changes that will help you get better. Some trial and error may be needed. That’s because no single combination of treatments works for everyone. […] When you have ME/CFS, you may not be able to do the things you would like to do. This may lead to feelings of frustration and anxiety. It can also lead to depression. Depression is not the same thing as ME/CFS. But it can make your ME/CFS symptoms worse. […] Here are some steps you can take to control and sometimes relieve your ME/CFS symptoms. Manage your activity so that you can be as active as possible without causing your symptoms to get worse. […] Medicines don’t cure ME/CFS. But they can help relieve your symptoms.

• #2 Chronic fatigue syndrome (CFS) | Better Health Channel

  https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs

  Everyone involved in supporting someone with ME/CFS needs to understand Post Exertional Malaise, which is an abnormal, biological response to exercise or activity. […] Speaking with a qualified mental health professional who understands the challenges of living with ME/CFS can be very helpful. […] 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.

• #2 Myalgic Encephalomyelitis  | PM&R KnowledgeNow

  https://now.aapmr.org/myalgic-encephalomyelitis/

  Education on the disease process and PEM phenomenon are important aspects of helping patients not only feel validated in their experience but also assist in improving quality of life and preventing acute exacerbations. Patient self-management guides and handouts are available to download freely and such use should be encouraged.

• #2 Understanding Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in the School-aged child – Considerations for School Nurses

  https://www.massmecfs.org/nurse-patti-s-blog/765-patti-s-blog-1

  The school nurse is instrumental in educating teachers, administrators and other school personnel of the educational challenges brought on by ME/CFS and issues with OI (orthostatic intolerance) that accompany the disease. […] In summary, Pediatric ME/CFS is a disease associated with substantial impairment of normal activities that impact a young persons entire life. Coping with debilitating medical symptoms, changed relationships within the family, absence from school and loss of socializing with peers can all result from the illness causing extreme confusion and crisis. Many of the symptoms of ME/CFS are amenable to specific therapies and accommodations. Successful management is based on determining the optimum balance of rest and activity to help prevent post-exertional symptom worsening. Medications are helpful to treat pain, insomnia OI and other symptoms. School nurses can help improve recognition, identify comorbid conditions, provide emotional support and encouragement, and suggest reasonable accommodations.

• #2

  https://link.springer.com/article/10.1007/s11606-019-05375-y

  Medical providers can teach patients how to recognize their own personal energy limits and use pacing (dividing symptom-producing activities into smaller parts with interspersed rest intervals) to stay within those limits. […] Practitioners can also help patients with appropriate pharmacological and non-pharmacological treatments. […] For optimal patient care, we recommend a ME/CFS specialist or a specialist center supported by a multi-disciplinary team. […] With this inter-professional approach, practitioners can lessen harms while helping patients improve their health, function, and quality of life to the extent possible.

• #2 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – symptoms and treatment | healthdirect

  https://www.healthdirect.gov.au/chronic-fatigue-syndrome-cfs-me

  Your doctor may also recommend energy management, or pacing, as a coping strategy. […] Pacing, or energy management, aims to find the right balance between rest and everyday activities. […] Your doctor may also suggest working with other healthcare professionals such as an occupational therapist for home adaptations, a physiotherapist, or a psychologist can help provide symptom relief through cognitive behaviour therapy or mindfulness. […] Currently here is not enough evidence to support the use of any medicines for ME/CFS. […] Be careful when considering any commercially available treatments as ME/CFS doesn’t have a known cure yet.

• #2 Myalgic encephalomyelitis/chronic fatigue syndrome – Wikipedia

  https://en.wikipedia.org/wiki/Myalgic_encephalomyelitis/chronic_fatigue_syndrome

  ME/CFS has a large social and economic impact, and the disease can be socially isolating. About a quarter of those affected are unable to leave their bed or home. People with ME/CFS often face stigma in healthcare settings, and care is complicated by controversies around the cause and treatments of the illness. […] Care for ME/CFS involves multidisciplinary healthcare professionals. Usually, the primary care clinician plays an important role in coordinating health care, social care and educational support for those still in school. This coordinator can help provide access to community resources such as occupational therapy and district nursing. Management may start with treating the most disabling symptom first, and tackle symptoms one by one in further health care visits. […] Pacing, or managing one’s activities to stay within energy limits, can reduce episodes of PEM. Addressing sleep problems with good sleep hygiene, or medication if required, may be beneficial. Chronic pain is common in ME/CFS, and the CDC recommends consulting with a pain management specialist if over-the-counter painkillers are insufficient.

• #2 Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

  https://pmc.ncbi.nlm.nih.gov/articles/PMC8544443/

  Primary care providers and other healthcare providers may not have seen patients with this level of severity before. […] A patient-centered, collaborative approach to care that is grounded in compassion and respect for the patient in all interactions will be of benefit to everyone. […] Plan for the need to see the patient in their home. […] Respect the nature and severity of the patients disease in all clinical interactions. […] Accept the validity of the patients report of symptoms. […] Partner closely with the caregiver, if one is involved, and if needed, other healthcare professionals to provide the resources, services, education, and practical help needed by the patient and caregiver. […] In addition to the diagnostic approaches used for all ME/CFS patients, the following assessments are particularly important for the person with severe or very severe ME/CFS: Evaluate the patients basic and instrumental activities of daily living (ADLs and IADLs). […] Assess the patients individual energy limits (their energy envelope) and the energy they expend on ADLs and IADLs. […] Investigate medical issues that may be impacting the patients symptom burden or level of functioning.

• #2 Chronic Fatigue Syndrome (Myalgic Encephalomyelitis): Practice Essentials, Background, Pathophysiology

  https://emedicine.medscape.com/article/235980-overview

  The National Academy of Medicine (formerly The Institute of Medicine) proposed that the condition be called systemic exertion intolerance disease (SEID) to better reflect the condition’s hallmark defining symptom, postexertional malaise. […] The pathophysiology of ME/CFS involves disruptions in energy production, gut health, autonomic function, and immune regulation. […] Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is recognized as a biological illness and not a psychological disorder or malingering for secondary gain. […] Individuals with ME/CFS have a poor prognosis with low rates of recovery or improvement.

• #2 Chronic Fatigue Syndrome (Myalgic Encephalomyelitis): Practice Essentials, Background, Pathophysiology

  https://emedicine.medscape.com/article/235980-overview

  Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has no cure, its symptoms can persist for years, and its clinical course is punctuated by remissions and relapses. […] The exact cause of ME/CFS is not known, but it is believed to be a biological illness rather than a psychological disorder. […] Diagnosing ME/CFS can be challenging due to the lack of specific diagnostic tests and the absence of a universally accepted definition. […] Access to specialist services for ME/CFS varies across different regions, with some areas reporting limited availability of specialized care. Addressing these disparities in access to care is important to ensure better support and management of individuals with ME/CFS. […] Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) originally was termed myalgic encephalomyelitis (ME) because British clinicians noted a skeletal muscle component manifesting as chronic fatigue and an encephalitic component manifesting as cognitive difficulties.

• #2 Myalgic encephalomyelitis (Chronic fatigue syndrome) – Symptoms, diagnosis and treatment | BMJ Best Practice

  https://bestpractice.bmj.com/topics/en-gb/277

  Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe, multisystemic, and disabling condition. […] A history of post-exertional malaise (PEM), also known as post-exertional neuroimmune exhaustion (PENE), for a minimum of 6 months is considered a defining key symptom. […] Although diagnostic criteria stipulate that diagnosis in adults should not be made until after 6 months of symptoms (3 months for children) and negative medical evaluation, the 2021 UK National Institute for Health and Care Excellence (NICE) guidance discusses the negative impact of a 6-month delay in starting management. NICE therefore recommends that observation in adults be reduced to 3 months before initiating therapy. […] There are no objective diagnostic tests, verified biomarkers, curative medications, or treatments for ME/CFS. The primary goals of treatment are to manage symptoms and improve functional capacity.

• #2 4. Interventions, management and rehabilitation – Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME-CFS): good practice statement – gov.scot

  https://www.gov.scot/publications/scottish-good-practice-statement-myalgic-encephalomyelitis-chronic-fatigue-syndrome-cfs/pages/5/

  Acknowledge the reality of the patient’s symptoms and the impact on their life. […] Share decision-making with the patient. […] Be explicit about diagnosis and co-morbidity (if relevant). […] Explain the possible causes, nature and fluctuating course of the illness, together with possible management options (benefits/risks), taking account of the person’s age and the stage, severity and variability of their illness. […] Explore the range of management options that can be utilised, as appropriate to the particular patient’s condition. […] Offer information on other sources of support (e.g. national charities, local groups and services). […] Involve family members and care givers (where appropriate) when discussing care plans. […] The following are usually helpful areas to discuss: Diagnosis: A clear diagnosis, with an explanation of why the diagnosis has been made in the particular patient’s case, can be helpful and therapeutic.

• #2 The ‘all in the mind’ myth of myalgic encephalomyelitis/chronic fatigue syndrome | Nursing in Practice | 27 June 2016 – The ME Association

  https://meassociation.org.uk/2016/06/the-all-in-the-mind-myth-of-myalgic-encephalomyelitischronic-fatigue-syndrome-nursing-in-practice-27-june-2016/

  In the absence of a cure for ME/CFS, nurses are well placed to provide supportive care. […] By understanding the symptoms generated by the illness, nurses may be able to offer patients better care. […] Nurses should not underestimate the power and importance of the nursing position to relieve suffering, prevent harm and promote better care for ME/CFS patients.

• #2 Myalgic encephalomyelitis (Chronic fatigue syndrome) – Symptoms, diagnosis and treatment | BMJ Best Practice

  https://bestpractice.bmj.com/topics/en-gb/277

  Primary care clinicians play a key role in management of patients with ME/CFS, typically retaining responsibility for long-term care and monitoring, in partnership with the ME/CFS specialist team in secondary care. […] Newer diagnostic criteria emphasise the importance of PEM as a key, defining feature of ME/CFS. […] Symptoms of PEM include fatigue, headaches, muscle aches, cognitive deficits, and insomnia. […] Patients are often limited to a few hours per day of productive endeavours, with the remainder of the time spent resting with slow and partial recovery of their debilitating symptoms.

• #2 Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) | Altru Health System

  https://www.altru.org/health-library/conditions/myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs

  Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complicated disorder. […] Treatment for the condition focuses on easing symptoms. […] Symptoms of ME/CFS can vary from person to person, and the severity of symptoms can fluctuate from day to day. […] Symptoms of ME/CFS can come and go, and often are triggered by physical activity or emotional stress. This can make it difficult for people to maintain a regular work schedule or to even take care of themselves at home. […] 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. […] Lack of sleep can make other symptoms more difficult to deal with. […] Emotional support and counseling may help you and your loved ones deal with the uncertainties and restrictions of this disorder. […] You may find it helpful to join a support group and meet other people with your condition.

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