Myalgic Encephalomyelitis

ME diagnostic criteria

How do you know if you have ME?

Clinicians will assess your symptoms against a case definition — a set of criteria specific to the disease, to see if you fulfil the requirements for a diagnosis. There are a number of case definitions that have been used over the years to diagnose ME.As yet there are no biomarkers that can be used in clinical practice, so the criteria have all been arrived at by the consensus of experts. Five of these criteria are discussed below, with more specific details provided for the CCC and the IOM/NAM – the two that are most widely used for diagnosis in Ontario — in the boxes that follow:

• the 1994 Fukuda chronic fatigue syndrome case definition
• the 2003 Canadian Consensus Criteria for ME/CFS (the CCC),
• the 2011 International Consensus Criteria for ME (ICC-ME)
• the 2015 Institute of Medicine, now the National Academy of Medicine (IOM/NAM) diagnostic criteria, and
• the 2021 UK National Institute for Health and Care Excellence (NICE) diagnostic criteria.

The Fukuda case definition for Chronic Fatigue Syndrome (CFS) 1994:

The Centers for Disease Control and Prevention coordinated the development of a case definition for what was being termed ‘chronic Epstein-Barr virus syndrome’ in 1988 and its update in 1994. The 1988 definition by Holmes and colleagues was the first use of the name ‘chronic fatigue syndrome,’ chosen because “chronic or recurrent debilitating fatigue” was what primarily characterized the symptom complex. This terminology was retained in the update. The 1994 update was done under the leadership of respected physician and epidemiologist Keiji Fukuda who at that time was with the CDC. The Holmes and the Fukuda definitions were developed for research not clinical purposes: the Fukuda definition (also called Fukuda criteria) is still used for selecting participants in some research.

The Fukuda definition requires prolonged fatigue plus four of eight other symptoms. One of the main criticisms of the definition is that it does not require post-exertion malaise – now widely recognized as the disease’s hallmark symptom — as a mandatory requirement. In other words, the Fukuda definition includes a very heterogeneous group of people, including those with chronic fatigue that can be explained by other conditions, including mental health conditions.

Canadian Consensus Criteria (CCC) for ME/CFS 2003:

In 2003 what has become to be known as the Canadian consensus criteria (CCC) was developed and for the first time the combined term myalgic encephalomyelitis/chronic fatigue syndrome was used. The development of the criteria was spearheaded by the National ME/FM Action Network, with terms of reference created by Health Canada. These criteria require an extensive list of symptoms, including post-exertional malaise (PEM), with the symptoms from across a number of body systems. (see Box below). The criteria were developed for clinical use but have often been used in research. Although the CCC has proven to be very good in identifying ME/CFS cases it has been criticized as being complicated to apply in practice. The CCC is often used by expert/advanced practice healthcare providers to confirm a screening diagnosis made using the IOM/NAM criteria.

International Consensus Criteria for Myalgic Encephalomyelitis (ICC-ME) 2011:

In an attempt to move beyond the “chronic fatigue syndrome” label and to incorporate emerging research, in 2011 an international group of experts, some of whom had participated in developing the CCC, put forward a new set of criteria for myalgic encephalomyelitis intended for both clinical and research use. They used the CCC as a starting point but they: 1) removed the need to wait six months before being diagnosed, 2) required post-exertional neuroimmune exhaustion, which they called PENE (noted by the IOM report writers as the ICC-ME term for PEM) and 3) also required symptoms from three symptom categories (a. Neurological impairments, b. Immune, gastrointestinal, and genitourinary impairments and c. Energy production/transportation impairments). These criteria were hailed by some as a step forward in distinguishing ME from chronic fatigue but they never gained a substantial clinical or research following; although there are some, patients in particular, who are strong advocates and do not feel any other definition both captures their disease and rules out those with chronic fatigue who do not also have the entire symptom complex. These criteria will occasionally be seen in use in research publications and have been recommended by the US Clinician Coalition as an alternate to the CCC for confirming an ME diagnosis (after screening using the IOM/NAM criteria).

Institute of Medicine/National Academy of Medicine (2015):

Enter the 2015 Institute of Medicine criteria. The criteria were quite similar to the CCC but refined to focus on central symptoms and aimed at making it easier for clinicians who do not focus on ME/CFS patients to make a timely diagnosis. (See box below) As stated, the CCC is often used by expert physicians to confirm the diagnosis that has been arrived at using the 2015 IOM criteria. The 2011 ICC-ME can also be used to confirm the diagnosis.

NICE Guidelines (2021):

The UK National Institute for Health and Care Excellence guideline, published in October 2021 “covers diagnosing and managing myalgic encephalomyelitis (or encephalopathy) /chronic fatigue syndrome (ME/CFS) in children, young people and adults.” As far as criteria, it is similar to those in the IOM report but it shortens the time before which a diagnosis can be made to three months (from six months) for all ages. The purpose of this change is so patients can get the care they need earlier in their illness.

2015 Institute of Medicine (IOM) Diagnostic Criteria for ME/CFS

Diagnosis requires that the patient have the following three symptoms:

1. A substantial reduction or impairment in the ability to engage in pre illness levels of occupational, educational, social or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest, and
2. Post-exertional malaise,* and
3. Unrefreshing sleep*

At least one of the two following manifestations is also required:

• Cognitive impairment* or
• Orthostatic intolerance

Frequency and severity of symptoms should be assessed. The diagnosis of ME/CFS should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial or severe intensity.

Source: Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness 2015 US Institute of Medicine.

2003 Canadian Consensus Clinical Case Definition of ME/CFS

• Fatigue: Patient must have a marked degree of new onset, unexplained, persistent or recurrent physical and mental fatigue that substantially reduces activity level
• Post-exertional Malaise and Fatigue: There is a loss of physical and mental stamina, rapid muscular and cognitive fatigability, post-exertional fatigue, malaise and/or pain, and a tendency for other symptoms to worsen. There is a pathologically slow recovery period (i.e., it takes more than 24 hours). Symptoms are usually exacerbated by stress of any kind.
• Sleep Dysfunction: There is unrefreshed sleep or sleep quality and rhythm disturbance.
• Pain: There is a significant degree of myalgia. The pain can be experienced in the muscles, joints, or neck and is often migratory in nature. Often, there are significant headaches of new type, pattern, or severity.
• Neurological/Cognitive Manifestations: Two or more of the following difficulties should be present: confusion, impairment of concentration and short-term memory consolidation, disorientation, difficulty with information processing, categorizing and word retrieval, intermittent dyslexia, perceptual and sensory disturbances, and ataxia. There may be “overload phenomena”: informational, cognitive and sensory, and/or emotional overload, which may lead to “crash” periods and/or anxiety. [Crash refers to a temporary period of immobilizing physical and/or cognitive fatigue.]
• At least ONE symptom out of TWO of the following three categories:
  • Autonomic Manifestations: Orthostatic intolerance such as neurally mediated hypotension (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension, vertigo, lightheadedness, extreme pallor, intestinal or bladder disturbances with or without irritable bowel syndrome (IBS) or bladder dysfunction, cardiac arrhythmia, vasomotor instability, and respiratory irregularities.
  • Neuro-endocrine Manifestations: Loss of thermostatic stability, heat/cold intolerance, anorexia or abnormal appetite, marked weight change, hypoglycemia, loss of adaptability and tolerance for stress, worsening of symptoms with stress and slow recovery and emotional lability.
  • Immune Manifestations: Tender lymph nodes, recurrent sore throat, flu-like symptoms, general malaise, new sensitivities to food, medications and/or chemicals.

The illness persists for at least six (6) months. It usually has a distinct onset, although it may be gradual. Preliminary diagnosis may be possible earlier. Three months is appropriate for children. To be included, the symptoms must have begun or have been significantly altered after the onset of the illness. It is unlikely that a patient will suffer from all symptoms in Criteria 4 and 5. The manifestations fluctuate and may change over time. Symptoms can exacerbate with stress, resulting in a slow rate of recovery. Children may experience numerous symptoms of similar severity, but their hierarchy of symptom severity tends to vary from day to day.

Source: Carruthers BM, Jain AK, De Meirleir KL, Peterson DL, Klimas NG, Lerner AM, Bested AC, Flor-Henry P, Joshi P, Powles ACP, Sherkey JA, van de Sande MI. Myalgic Encephalomyelitis/chronic fatigue syndrome: Clinical working case definition, diagnostic and treatments protocols. J Chronic Fatigue Syndr. 2003;11:7–115

Onset and what is known about natural history

The US Centers for Disease Control and Prevention provides a very clear explanation of onset (acute or gradual), severity (wide variety from mild to very severe) and frequency of symptoms (can fluctuate widely even on a daily basis) and the very serious extent of impairment both physical and mental that is possible in some people. The webpage explains what the implications are for daily life at the various levels of severity, including for those requiring the use of wheelchairs or who are house or bed-bound. This information can be found at the health-care provider/presentation-clinical-course section of their website and it should be referred to for more detail than was provided in our Nutshell explanation. We do have a separate section for the severely and very severely affected.

Very little research has been undertaken on the natural history or disease progression in ME so we know very little about it in a research context. We do have individual patient experience as well as clinician observation so there is some information upon which to draw. And from that we know that for some patients there can be a lessening of symptoms — although it can be unpredictable — and for some a complete remission, at least for a time. Complete recovery appears to be rare, based on the few and methodologically challenged studies that have been conducted. There remain huge research gaps in this area.

The severely affected (severe and very severe ME)

People who are severely affected are too sick to show up at doctors’ offices and have largely been invisible to the health system. And yet their numbers, estimated to be 25% of the ME population and needs are immense. They are housebound or bed bound. The most severely affected of those in almost constant pain, physically limited, cognitively limited and overwhelmed by movement, lights, noise, touch. They often need help with basic activities like eating, toileting, moving about (if they can even do that).

It is only relatively recently that more attention has been placed on what their needs are and how to provide medical and social care.

Here are some links to resources that might be of assistance:

• The Center for Disease Control and Prevention’s webpage on severely affected patients — https://www.cdc.gov/me-cfs/healthcare-providers/clinical-care-patients-mecfs/severely-affected-patients.html
• The ME Research UK factsheet on severe myalgic encephalomyelitis —https://www.meresearch.org.uk/severe-me-the-facts/
• The website for the UK-based group that provides information and advocates for the severely ill, called the 25% group, as it is estimated that 25% of people with ME are in the severely affected group — https://25megroup.org
• A December 2022 letter written by the authors of an academic article [link under academic article to https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8544443/] to healthcare providers, setting out some of the advice contained in the article — https://www.omf.ngo/wp-content/uploads/2022/12/Letter-for-providers-on-severe-MECFS-Nov-2022.pdf

Co-morbid conditions

There are many conditions that are co-morbid (can co-exist) with ME and, where present, usually mean an increased symptom burden. Fibromyalgia, a common co-morbid diagnosis is an example as it can increase the muscle pain experienced. Identifying and appropriately treating co-morbidities can improve quality of life.

Just to give a small sample of conditions co-morbid with ME: fibromyalgia (as already mentioned), multiple chemical sensitivity, orthostatic intolerance, irritable bowel syndrome, migraine headache, sleep apnea, ehlers-danlos syndrome. You can find a much lengthier (but not exhaustive list) of common co-morbid conditions at the U.S. Clinician Coalition website on p. 4 of their July 2020, Diagnosing and Treating ME/CFS handout or in their 2021 journal article Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management, Supplemental Table 3.

They have grouped them in the categories of autonomic dysfunction, rheumatological disorders, neurological disorders, immunological disorders, gastrointestinal disorders, endocrine/metabolic disorders, sleep disorders, psychiatric disorders, gynaecological disorders and miscellaneous.

ME in children, including adolescents

ME does occur in young children but is more common in adolescents. Because there has been very little research specific to children, we know less about it in that population than in the adult population. Less doesn’t mean we know nothing though and there was a specific chapter of Pediatric research in the 2015 US Institute of Medicine (now National Academy of Medicine)’s major report, Beyond ME/CFS: Redefining an Illness.

We also have a sense of the prevalence in children from a 2020 community-based study out of the US. It found the prevalence was .75% (or 75 out of 10,000). This may not seem like a lot but in every 200 children it means it is likely more than one of them will have ME.

As with adults, ME can occur gradually or acutely (following infectious mononucleosis is a classic example in adolescents). Similar to adults there is a wide range of severity. An excellent primer on Diagnosis and Management in young people was prepared by experienced ME clinicians in 2017. The range of symptoms in children is similar to adults and diagnosis can be made using the same criteria. Although this is the case some symptoms seem to be more common in children than in the adult population, such as orthostatic intolerance.

In children there are the additional complications of educational and social development issues. Educational accommodation is often required. It is important that teachers and administrators understand that ME is a medical disease that can result in difficulties with school attendance or an inability to participate in physical activities due to exertion intolerance – it not the result of an unwillingness to participate.

Fortunately, in addition to the 2017 Primer on Diagnosis and Management, [link again if you think it is needed] there are helpful resources available through a number of places. We’ve linked to some of these below. Of note, the U.S. Centers for Disease Control and Prevention (CDC)’s website has useful, downloadable fact sheets: one for parents/guardians, one for healthcare professionals, and one for education professionals.

The Centers for Disease Control and Prevention (Symptoms and Diagnosis, Treatment, Fact Sheets — https://www.cdc.gov/me-cfs/me-cfs-children/index.html

ME/CFS in Adolescents and ME/CFS in children [https://ammes.org/mecfs-in-adolescents/ https://ammes.org/mecfs-in-children/ ]- American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society

Children and Young Adults with ME/CFS [ https://solvecfs.org/wp-content/uploads/2022/05/Children-and-Teens-with-MECFS-or-Long-Covid.pdf ]– Solve ME/CFS Initiative

The Teach-ME sourcebook [link under Teach-ME sourcebook to https://www.mefmaction.com/images/stories/Support/TEACH-ME2edition.pdf] from the National ME/FM Action Network is a valuable resource for parents and teachers.

Is There Help For ME?

Depending on your specific situation, there is help for ME and we discuss and provide links to some of it in what follows. The information provided in this section is for informational purposes only, it is not intended to diagnose or to treat ME.

Currently there is no cure for ME. However, research is actively underway to discover treatments. Because the causes of ME are still under investigation, most of the currently available treatments are aimed at relieving specific individual symptoms. These treatments may require a medical doctor or other allied healthcare practitioners (such as a naturopathic doctor, physiotherapist, etc.). They can be immensely helpful, as can self-help and self-management approaches. Having a support system in place is also important and this applies whether you are a person with ME or a caregiver for such person.

Many people with ME look beyond the mainstream medical (allopathic) system for assistance. They may look, for example, to complementary or integrative medicine. The US National Institutes of Health has a center specifically designed for Complementary and Integrative Health. Linked here is their fact sheet explaining the terms and some of the modalities. We do not go into this topic further except to say that many with ME do find some of the treatments or suggestions (including dietary changes, supplements, acupuncture and more) helpful. As with any treatment modality, be aware of potential benefits as well as potential risks, and ask questions.

Also included in this section are patient specific precautions related to potential adverse effects related to treatments that were used in the past (and may still be prescribed by some, who may not be familiar with the updated literature in the field of ME).

Medical Help

Medical assistance is available for ME but because it is not widely taught in medical school and because it is a multi-system disease, that crosses several specialty domains, you may need to actively seek out health care providers who are knowledgeable and experienced in this area of medicine. We have already noted that there is currently no cure and that treatments offered are symptom based. Even so, these symptom based treatments/interventions can be of assistance.

The US ME/CFS Clinician Coalition, a group of 21 US-based clinicians who specialize in ME/CFS, is extremely positive as to what can be done:

“While there are no definitive diagnostic tests or FDA [US Food and Drug Administration] approved treatments specific to ME/CFS, there are no shortage of interventions a clinician can make to improve patient quality of life and significantly reduce the overall symptomatic burden of ME/CFS.”

Their website is a valuable source of pertinent information.

Bear in mind that treatment plans need to be individualized, as not every person has the same symptoms or same needs. Given one of the diagnostic criteria for ME is post-exertional malaise, however, everyone with ME will benefit from understanding and learning the concept of energy management and pacing.

This 2019 article, from one of the major health plans in the United States, provides some insight into what individualized care means in practice.

In the UK in 2021, a new guideline for ME/CFS care diagnosis and management was published. This guideline recognizes that ME is complex and requires an interdisciplinary team of healthcare professionals to provide care. The ME/CFS specialist teams that were envisaged:

“consist of a range of healthcare professionals with training and experience in assessing, diagnosing, treating and managing ME/CFS. They commonly have medically trained clinicians from a variety of [specialty domains] (including rheumatology, rehabilitation medicine, endocrinology, infectious diseases, neurology, immunology, general practice and paediatrics) as well as access to other healthcare professionals specialising in ME/CFS. These may include physiotherapists, exercise physiologists, occupational therapists, dietitians, and clinical or counselling psychologists.”

This type of interdisciplinary care team is not yet available in Canada but it does provide a potentially useful target.

Three provinces (Ontario, British Columbia and Nova Scotia) have clinics providing some services for patients with ME – all have lengthy waiting lists, all are for adults and at the time of writing, all are restricted to patients from within the particular province. In Ontario, the clinic devoted to ME, FM and ES/MCS, the Environmental Health Clinic, is at Women’s College Hospital in Toronto. Doctors practising there are familiar with these conditions and their multi-system nature and are equipped to diagnose them and provide management plans. Due to limited funding, they cannot provide ongoing care. Nova Scotia’s clinic is at the Integrated Chronic Care Service (ICCS) in Fall River and British Columbia’s at the Chronic Complex Diseases Program (CCDP) at BC Women’s Hospital in Vancouver.

In what follows, you will find links to a selection of information from trusted sources, aimed at healthcare practitioners but which patients and caregivers might also find informative and helpful.

Medical education webinar:

Myalgic Encephalomyelitis – Diagnosis, Management and Current Research

This educational webinar from September 22, 2021 features three ME specialists from three different countries, UKs Dr. Nina Muirhead, USA’s Dr. Lucinda Bateman and from Canada (and the UK) Dr. Luis Nacul along with patient voice Hilary Robertson of the ME/FM Society of BC. This webinar, created for the Federation of Medical Women in Canada, was developed in partnership by the ME|FM Society of BC and the Interdisciplinary Canadian Collaborative Research Network (ICanCME). It was recorded live on September 22, 2021.

Peer-reviewed journal articles

• In 2021 the journal Mayo Clinic Proceedings published an article authored by 21 clinicians specializing in ME/CFS (the US ME/CFS Clinician Coalition, who we referenced earlier) about best clinical practices for adults with ME/CFS. As the Abstract states, in part:
  “This article summarizes their top recommendations for generalist and specialist health care providers based on recent scientific progress and decades of clinical experience. There are many steps that clinicians can take to improve the health, function, and quality of life of those with ME/CFS, including those in whom ME/CFS develops after COVID-19. Patients with a lingering illness that follows acute COVID-19 who do not fully meet criteria for ME/CFS may also benefit from these approaches.”
  The citation for the article is provided below. The full text version can be found here. Bateman L., Bested A.C., Bonilla H.F., Chheda B.V., Chu L., Curtin J.M., Dempsey T.T., Dimmock M.E., Dowell T.G., Felsenstein D., et al. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management. Mayo Clin. Proc. 2021;96:2861–2878. doi: 10.1016/j.mayocp.2021.07.004.
• Authored by Canadian physicians Alison Bested and Lynn Marshall the article dates from 2015. Its diagnosis and management suggestions are based on the Canadian Consensus Criteria (CCC) and remain accurate and timely. Supplemental material including the Functional Capacity Scale and Activity log, as well as to the CCC check list are all most useful for both clinicians and patients. Bested, A. C., & Marshall, L. M. (2015). Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an evidence-based approach to diagnosis and management by clinicians. Reviews on environmental health, 30(4), 223–249. https://doi.org/10.1515/reveh-2015-0026

Other trusted sources

Below are four additional trusted sources but many other ME organizations and patient groups worldwide also have very valuable information on their websites. Some of these are listed in our useful information and links section.

Centers for Disease Control and Prevention

• https://www.cdc.gov/me-cfs/healthcare-providers/index.html
• https://www.cdc.gov/me-cfs/healthcare-providers/clinical-care-patients-mecfs/index.html
• https://www.cdc.gov/me-cfs/healthcare-providers/clinical-care-patients-mecfs/additional-strategies.html

Bateman Horne Center

• https://solvecfs.org/me-cfs-long-covid/resources-for-healthcare-providers/
• https://solvecfs.org/wp-content/uploads/2022/05/Finding-a-Doctor.pdf

The ME/FM Society of BC has compiled a lot of useful information on their website. The following is a link to some frequently asked questions, the first seven of these are specifically about medical help.

We end this section on medical help with a precautionary note. It may be helpful to be aware that because ME is not widely taught in medical schools, many doctors are not familiar with it and do not know how to diagnose or treat it. Some will be very open to receiving information, including that provided to them by patients, and if this is the case, some of the resources provided in this section might be helpful. Other practitioners may not be so open, and some still wrongly believe that ME is psychological in origin. We don’t have a peer-reviewed Canadian study directly on point, but there was one undertaken in the UK in 2021 amongst a small group of hospital doctors showing many misconceptions as well as gaps in knowledge. A very small healthcare provider qualitative study done for the Ontario Task Force on Environmental Health and contained in Appendix F to their 2018 Care Now report looked at provider knowledge for ME, FM and ES/MCS together, so it is difficult to draw definitive conclusions regarding ME, but it did point in the same directions: misconceptions and gaps in knowledge.

Disability help

Not everyone with ME will need to apply for financial assistance as a result of disability, but many will. Some people are significantly disabled by their illness and cannot continue working and they will need to apply for long term disability programs offered through their employment and/or through the Canadian Pension Plan. Some may need to apply for provincial disability assistance — in Ontario this is through the Ontario Disability Support Program.

The National ME/FM Action Network has a helpful reference in their CPP Disability guide.

Almost all the disability assistance requires some certification from a healthcare professional.

This guide, Community and Financial Resources, was prepared by the BC Chronic Complex Diseases Program (CCDP) for people in the province of British Columbia but it may provide some ideas for people living in other provinces of the type of support that might be available. There are sections in this guide that are applicable across the country.

Patient Safety re exercise therapy and rehabilitation

We have this as a separate heading to ensure that people with ME and their caregivers pay very close attention. Although exercise is important for most, it may not be beneficial for people with ME, or as a minimum will need to be engaged in with great caution.

As previously mentioned, in 2021 the United Kingdom’s National Institute for Health and Care Excellence (NICE) published a new guideline for the diagnosis and management of ME/CFS. This guideline made special negative mention of both CBT [cognitive behavioural therapy] and GET [graded exercise therapy], with a note that the therapies (as defined in the document) should not be used as a treatment of ME.

The Mayo Clinic Proceedings peer reviewed article on Diagnosis and Management of ME/CFS has a special section discussing the outdated standard of care represented by graded exercise therapy (GET) and cognitive behaviour therapy (CBT). These therapies were previously recommended based on the premise that ME was a condition rooted in false illness beliefs and deconditioning rather than the present understanding of it as a biomedical illness.

In their May 1, 2018 letter to healthcare providers, the Workwell Foundation noted: “Our experiences working with ME/CFS patients are that graded exercise aimed at training the aerobic energy system, not only fails to improve function, but is detrimental to the health of patients and should not be recommended.” The UK patient-focussed organization Action for ME states about graded exercise therapy that: “The information we share about graded exercise therapy (GET) is not a recommendation.”

Self-Management

Self-management is very empowering and learning the skills involved is very useful for any chronic illness. ME is no exception. Self-management means observing and learning how the disease affects you, and figuring out if there are things that you can do that will improve how you feel or how you manage and cope with the illness.

There are several ways to learn self-management, including courses, books, online. Programs listed below are not all free of cost, therefore it is important to review content carefully before proceeding to assess if you feel the program may be of benefit.

Many local health authorities may offer courses in your area or online, so check and see if there are any in your area. Most of the courses available are geared for chronic illness in general and are not specific to ME. In Ontario, there are both in person and online self-management programs.

Taking the basic skills of self-management and applying them to ME, a number of patients from across Canada, under the medical guidance of Dr. Eleanor Stein (see below for more about Dr. Stein) developed a program dealing with ME: ME/CFS – Living with Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) – Patients helping patients. This course was originally offered in person in Calgary. It has been turned into a series of three videos. The videos are: Defining ME, Self-Management and A Life worth living. These videos, and links to slides and resources, can be found here.

It is important, when reading or listening to the experiences of others, to remember that everyone is an individual, so something that works for others may not work for you and conversely, you may be helped by something that does not work for others.

Three more links that you may find useful for self-management are:

1. The ME/CFS & Fibromyalgia Self-Help website. “The ME/CFS and Fibromyalgia Self-Help Program is a non-profit organization offering several low-cost and free online self-help courses, plus other resources for people affected by ME/CFS and fibromyalgia. Founded in 1998, it has conducted hundreds of self-help groups, teaching thousands of people how to manage their illness.” The website is full of some very useful information and the programs have helped many people over the years. Here is one example of the information, related specifically to creating a symptom management plan. [Some of these programs involve a fee.]
2. The online or self-study programs offered by Canadian physician Dr. Eleanor Stein. Her programs offer “education, empowerment and hope for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia, Environmental Sensitivities, Long COVID and Chronic Pain.” Dr. Stein has experience living with the illnesses and 22 years of experience treating them. She offers her expertise to others through her online and self-study courses, including Pathways to Improvement (a lifestyle modification program). [This program involves a fee.]
3. An article from 2015 (posted on the Massachusetts ME/CFS & FM Association website) as to why self-management (which the author, Howard Bloom, calls self-care) is important and some suggestions of things that worked for him.

Support

“A support system is a group of people who provide you with mental, emotional, and practical support when you need it most. They also keep you going strong when you are doing well.”

Support systems are extremely important for people living with ME. They are also important for their caregivers, particularly so, if the person being cared for is severely or very severely affected. In this section we provide some links relevant for people living with ME as well as some links relevant for caregivers. We end the section with some crisis resources.

For the person living with ME

The Solve ME/CFS Initiative notes:

“It is crucial to have a personal support system of family, friends, or caregivers to help you through this difficult, debilitating disease. It is important that this support system understands what you are going through so they can help in supportive, empathetic ways.

They go on to issue a bit of a caution, which we repeat, as a reminder – “it can be difficult to find reliable information and avoid misinformation.”

Support groups can be very important in providing a sense of community as you deal with the chronic illness that is ME. Here is what the website ME/CFS & Fibromyalgia Self-Help has to say:

“Support groups can be a crucial coping resource when you have a serious illness. Contact with fellow patients counteracts isolation and provides an experience of being acknowledged and supported. Such contact can be a way to feel understood, comforted and inspired.”

They also caution that not all support groups are created equal — and that it is important that you have a sense of belonging and that you have a positive experience.

A very good article from 2017 (but timeless) is about the importance of connection. It comes from the ME Action website.

It is worth noting that while the websites listing specific support groups endeavour to keep the information up-to-date, it is not always possible – the information can change quickly and without notice.

The American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society, a US non-profit set up to provide support and practical advice for ME and CFS patients, lists a number of support groups available for people with ME/CFS that are available online or through the phone. These listings can be found here.

From their list, we highlight two —

• the Bateman Horne Center (that we have mentioned previously in other connections) offers a monthly professionally moderated group on a predetermined topic.
• The online Zoomers ME, FM, MCS/ES or CFS and is hosted by the Canadian charitable organization, Action CIND. It meets on the first Tuesday of the month.

Other Canadian places where you might find more information about support or support groups are through the websites of:

• National ME/FM Action Network
• The BC ME/FM Society

Additional sources of information and support include:

• Phoenix Rising
• Health Rising/

For Caregivers

Just as a support system is important for the person living with ME, it is also something that caregivers may find helpful as well.

The American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society has some resources specific to ME on their website. More general background and information can be found in a number of locations on the web, including this example from the Mayo Clinic.

In Ontario, support resources are available through the website of the Ontario Caregiver organization.

Crisis resources

Canada — In Crisis? Call Talk Suicide Canada 1-833-456-4566. In Quebec 1-866-277-3553. Kids Help Phone 1-800-668-6868.

United States — Crisis resources can be found here.

Economic and societal impact

While there is no Canadian study that looks directly at the economic and social impact of ME, we can learn a lot from studies that have been conducted elsewhere: the UK, the US, Australia and Ireland. And we can supplement these findings with information from the Canadian Community Health Survey (CCHS), much of which is analyzed and reported by the National ME/FM Action Network in a number of their Quest newsletters. An excellent example of this work is contained in Quest 112, from Fall 2017, Special Issue: Under-served and in Great Need.

The bottom line of all this research and information is that ME has a very big economic and social impact, on individuals and also on their caregivers, on their families and on society as a whole.

The level of disability with ME is substantial and can vary from mild to very severe, with approximately 25% housebound. A US multi-clinic study found that up to 75% of people with ME are unable to work. Our (CCHS) data, while not looking directly at the bedbound or housebound aspects, show high percentages (close to 50%) of those with ME needing help with tasks. However, it did not explore how much help was needed. CCHS data from 2014 showed that more than 40% of people with ME were not employed, with about 25% permanently unable to work. We know from both the literature and from the CCHS data that the impacts are substantial at an individual level. Given the large numbers with ME, this has a substantial impact on the economy and at a societal level as well.

Early studies in the UK and US on the economic impact of ME/CFS found it was substantial and composed of individual expenses as well as costs to the healthcare system. An Australian study published in 2020 found that the economic impact of ME in Australia was estimated at $14.5 billion with “70% due to lost income, 24% due to direct personal OPP [out of pocket] costs on health and medical expenditure, and 6% incurred as a cost to government and the health care system.” “For direct OOP and Government health care expenditure, high average costs were related to medical practitioner attendance, diagnostics, natural medicines, and device expenditure, with an average attendance of 10.6 referred attendances per annum and 12.1 GP visits per annum related specifically to managing ME/CFS.” An Irish study also from 2020 found “ME/CFS patients face a wide range of costs, while there are also wider societal costs in the form of costs to the health service, lost productivity, and impacts on informal [caregivers].”

What can we say about Canada? We know that the basic situation is the same here as in other countries – ME is a costly disease for the individual (loss of employment and out of pocket health-related expenses, and high levels of disability) and for the healthcare system. The CCHS once again provides us with some information, and shows high levels of consultations with both family doctors and with specialists. Canadian prevalence figures are higher than many other countries, with between 1.4% and 1.9% of the population stating they had been diagnosed by a healthcare professional with ME (called CFS in the survey). What is also notable is that ME impacts many people who are of working age, a large proportion of whom are permanently unable to work.

Research is ongoing and progress is being made

ME research has been underfunded for decades in the US and elsewhere (including in Canada), but in spite of this, there are many promising research leads and a renewed sense of being on the verge of some big breakthroughs. In 2019, the Canadian Institutes of Health Research funded a research network for ME with the hope that biomedical research would result in an improved quality of life for people living with ME. The ICanCME Research Network is a small start in this direction.

Research is ongoing in many areas and in many countries. Dr. Anthony Komaroff has been involved in the field for decades as both a physician and a researcher. In 2021 he was asked what stood out for him. He replied: “The underlying biological abnormalities in ME that seem to me the most well established involve the brain and autonomic nervous system, chronic activation and exhaustion of parts of the immune system, defects in energy metabolism and a general hypometabolic state, and abnormalities of the gut microbiome. I think it is likely that they are all real, and all connected to one another. To me, the most important research agenda is to understand how these abnormalities are connected to each other.”

Dr. Komaroff’s response does not cover all the research that is taking place into ME, but it gives an indication of how wide-ranging it is. There is every reason to be hopeful.

Similarities with long COVID

When COVID-19 first emerged as a health issue, many in the ME community predicted that it would result in a post-infectious condition similar to ME in many cases. This was because many people with ME developed their condition after an infectious illness.

This prediction has proven to be the case with up to 50% of long COVID cases presenting with a similar symptom profile to ME (post exertional malaise, extreme fatigue and activity reduction, sleep disruption, cognitive impairment and/or dysautonomia) and are meeting ME case criteria.

A January 2023 review of long COVID entitled Long COVID: major findings, mechanisms and recommendations draws many of the same parallels and suggests, as have other articles, that long COVID research and care can draw upon lessons already learned in the ME community.

Patient associations, including the US Solve ME/CFS, are working actively with the long COVID community. In the UK the ME Association put out a booklet on long COVID in May 2022. “The [UK] ME Association (MEA) takes the view that Long Covid and ME/CFS are both examples of a serious and debilitating condition that can follow any type of viral infection.”

The ME community is hopeful that research into long COVID will be helpful in arriving at answers for ME and other similar illnesses, and many articles including this one from November, 2022 are appearing, suggesting that the injection of research funds for long COVID may have positive impacts on unravelling the mysteries of ME and will contribute to improved care.

Please also see the information in the Long COVID section on the overlaps with ME. This is an emerging area with more that will be learned, of benefit to both diseases.

LINKS TO RESOURCES, RESEARCH, EDUCATION

Government or agency sites

Centers for Disease Control and Prevention (CDC) — Myalgic Encephalomyelitis/Chronic Fatigue Syndrome web pages. The CDC has a large informational site for the public and for healthcare providers including toolkits that can be downloaded and links to educational resources. We have referred to some of this material in our ME webpage.

Canadian Institutes of Health Research – Institute of Musculoskeletal Health and Arthritis (IMHA) Online Resource Library

Scroll down to the section on Myalgic Encephalomyelitis (ME). It lists international, national, provincial and local organizations dedicated to supporting people with ME. As well it contains links to useful websites, articles, videos and other resources.

Public Health Agency of Canada (Archived material, not updated)

None of the references in this link are from post 2017 and it does not include mention of the 2015 IOM/NAM report on ME/CFS.

Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network (ICanCME) – (website under development)

A CIHR-funded national network of researchers, clinicians and patient partners dedicated to advance the understanding of myalgic encephalomyelitis.

See A Conversation about Myalgic Encephalomyelitis with Dr. Nina Muirhead, a CIHR-IMHA webinar, March 16, 2021 – ICanCME Research Network Youtube channel https://www.youtube.com/watch?v=ilcben3ssQY&list=PLraoNsP__hX4FJwe3c1dq_-5_j1B3prxk&index=1&t=30s

Centres For ME Research

International

Open Medicine Foundation-funded research within five ME/CFS Collaborative Research Centres (CRCs) is based in Stanford, Harvard, Uppsala (Sweden), Montreal (Canada) and Melbourne (Australia). They have a charity registered in Canada as well as one in Australia. For more about Open Medicine Foundation go to https://www.omf.ngo

United States

Columbia University — Center for Solutions for ME/CFS– A research center at Columbia University committed to understanding the pathogenesis of ME/CFS. The Centre was one of the three NIH-funded ME/CFS Collaborative Research centers (2017 grant).

Cornell University — Center for Enervating NeuroImmune Disease (ENID)

The Center promotes research to identify cause(s), biomarkers, and pathophysiology to lead to prevention and treatment. The Center encompasses one of the three NIH-funded ME/CFS Collaborative Research centers (2017 grant).

Nova Southeastern University – Florida, Institute for NeuroImmune Medicine (INIM)

Research and treatment center for neuro-immune disorders including chronic fatigue syndrome and Gulf War Illness.

Simmaron Research ‘Scientifically redefining ME/CFS’ – Non-profit ME/CFS research organization building on the 40-year biobank of Dr. Daniel Peterson

Stanford ME/CFS Initiative – Clinical research to improve diagnosis and treatment of ME/CFS

The Jackson Laboratory – ME/CFS Research — The Jackson Laboratory was one of three NIH-funded Collaborative Research Centers (2017 grant)

University of Alabama At Birmingham — Neuroinflammation, Pain and Fatigue Laboratory – Jarred Younger

Whittemore Peterson Institute for Neuro-Immune Diseases – A non-profit medical research institute — To be a comprehensive center dedicated to translating scientific evidence into medical treatments, prevention strategies, and cures for those who are impacted by a spectrum of neuroimmune diseases.

Some Clinical Sites, Associations and Education

Each of these clinics has a waiting list, in some cases it is well over a year in length.  None of these clinics provide ongoing care al all are geared to the adult population.

British Columbia – The Complex Chronic Diseases Program (CCDP) was established in 2013 at the BC Women’s Hospital in Vancouver as a referral centre for the province of BC. http://www.bcwomens.ca/our-services/specialized-services/complex-chronic-diseases-program

Referrals to this program are for people over 19 and resident in BC and are made by primary healthcare professionals.  The program has “a mandate for care, education/knowledge transfer, and quality improvement/research for complex chronic diseases, including ME/CFS, FM and Alternately Diagnosed Chronic Lyme Syndrome.”

Nova Scotia – Integrated Chronic Care Service – Nova Scotia Health Authority (ICCS, formerly known as the Nova Scotia Environmental Health Centre) has roots that go back to 1996 and is located at Fall River, Nova Scotia.

https://www.nshealth.ca/content/integrated-chronic-care-service-iccs

As a result of service demand, this service is only available by referral from primary care providers from within Nova Scotia.  “The ICCS is an interdisciplinary team that provides short term support for individuals diagnosed with or presenting with symptoms of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, Fibromyalgia (FM) and/or Multiple Chemical Sensitivity/Environmental Illnesses.  (The) team provides comprehensive assessment recommendations and short-term interventions focused on self-management.”

Ontario – Environmental Health Clinic – (EHC) was established by the provincial government,ent in 1996 and is located at Women’s College Hospital in Toronto.

https://www.womenscollegehospital.ca/care-programs/environmental-health-clinic/

Referrals to the clinic are from primary healthcare providers. The clinic was established as “a provincial resource in promoting environmental health and to promote health care for people with chronic environmentally-linked conditions such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia Syndrome (FM) and Environmental Sensitivities (ES/MCS) and Electromagnetic Hypersensitivity.”

Bateman Horne Center — Is a non-profit Center of Excellence for research, clinical care and education for patients with multi-system complex diseases (msCCD). Many resources, including video, are available for patients and clinicians. We have referred to many of these in our ME webpage.

It is home to a Medical Education Resource Center —https://batemanhornecenter.org/merc/ Has a full video library on their Youtube channel — https://www.youtube.com/@OfferutahOrg

U.S. ME/CFS Clinician Coalition — Website contains a wealth of information on diagnosis and treatment, including a translation of their 2019 handout on the Basics of Diagnosis and Treatment in French, Italian, Spanish, German, Portuguese and Danish. We will be or have referred to some of this information in our ME webpage.

Educational videos from Dr. Eleanor Stein (Calgary, Alberta). Three short educational videos explaining i) What ME is, ii) How to diagnose it, and finally iii) helpful management strategies. The videos are based on material prepared for educating medical students at the University of Calgary.

American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society: Physician and Clinic Database – “a compilation of clinicians in the United States who have treated patients with ME and CFS.” As a note, although data can quickly get out of date, this may provide a helpful starting point for people in the United States or for those able to travel.

https://ammes.org/physician-and-clinic-database/

Drs with ME — Doctors with ME is the global professional association for medical practitioners and scientists with backgrounds developed in hospitals, surgeries, universities, financial services and think-tanks and with lived experience with ME or who stand with Doctors with ME. The website provides information and position papers related to ME and to long COVID.

IACFSME – International organization dedicated to the care and research of people affected by ME/CFS and related disorders.

Open Medicine Foundation Canada – A Canadian charity “driving research of ME/CFS, Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Post COVID.” The charity focuses on chronic complex disease research, collaborating with leading scientists and clinicians from around the world. https://www.omfcanada.ngo. A US charity, Open Medicine Foundation, exists for the same purposes.

Open Medicine Foundation Canada has a large resource Information section, called for your doctor https://www.omfcanada.ngo/your-resource-centre/#doctor

Physios for M.E. is a group of physiotherapists in the United Kingdom with a special interest in Myalgic Encephalomyelitis (ME) who aim to educate and advocate. Website has educational material.

Solve M.E. (Solve ME/CFS initiative) — “The Solve ME/CFS Initiative (Solve M.E.) is a non-profit organization that serves as a catalyst for critical research into diagnostics, treatments, and cures for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long Covid and other post-infection diseases.”

25% M.E. Group is a U.K. based charity raising awareness about severe ME. Its webpage has links to a number of resources for people with severe myalgic encephalomyelitis and for their carers.

Links To Patient Organizations

Canada

Action CIND – A registered charity with a vision to advance the recognition, empathy, treatment and support services for Chronic Immunological and Neurological Diseases (CIND).

Millions Missing Canada – Advocates for treatment access, appropriate medical care and equitable research funding for ME in Canada https://millionsmissingcanada.ca and the ME/FM Society of British Columbia https://www.mefm.bc.ca/

National ME/FM Action Network – Lots of useful information including the CPP disability guide, a sourcebook for teachers and parents, information on statistics and a quarterly newsletter Quest

ME/FM Society of BC – works to support ME and FM patients in BC to improve their health and quality of life by providing information about these illnesses. They also inform and educate health professionals and raise awareness with the general public and government. Their website contains information on a variety of subjects including the recently complete Convene project looking at the unmet needs of British Columbians living with Myalgic Encephalomyelitis — https://www.mefm.bc.ca/our-research

Association Québécois de l’Encéphalomyélite Myalgique — Website and resources in French

International

#ME ACTION — “An international organization working to develop and support a global network of individual advocates, local groups, city and state chapters, and country affiliates” whose mission is to fight for recognition, education and research. The website contains many resources for people with the condition, their caregivers and healthcare providers.

Science for ME – an independent, patient-led, international forum for anyone interested in ME/CFS – patients, carers, scientists, educators, clinicians, advocates. The forum contains postings and thoughtful discussions about many scientific topics or other topics of direct relevance including support and advocacy.

World ME Alliance — An alliance of national ME organizations that aims to bring ME out of the shadows.

United States

American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society – Its webpage contains a wealth of information about ME/CFS, treatments and support

Other useful links

Health Rising: Health Rising’s goal is the eradication of ME/CFS and FM by sharing the latest research, treatment and advocacy news. Founder Cort Johnson and guest bloggers share and analyze the latest in promising research.

Phoenix Rising: Phoenix Rising is an non-profit provides support and community to people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), as well as related conditions. They maintain a community forum for exchange of information.

Invest in ME Research: commissions and funds biomedical investigation into ME/CFS

ME Research UK: funds high-quality biomedical research into ME.

For action specific to Ontario, please see xxx.

Short List of References From Academic Publications

Peer-reviewed clinical references

2021 — Bateman, L., Bested, A. C., Bonilla, H. F., Chheda, B. V., Chu, L., Curtin, J. M., Dempsey, T. T., Dimmock, M. E., Dowell, T. G., Felsenstein, D., Kaufman, D. L., Klimas, N. G., Komaroff, A. L., Lapp, C. W., Levine, S. M., Montoya, J. G., Natelson, B. H., Peterson, D. L., Podell, R. N., Rey, I. R., … Yellman, B. P. (2021). Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management. Mayo Clinic Proceedings 96(11), 2861–2878. https://doi.org/10.1016/j.mayocp.2021.07.004

2015 — Bested, A. C., & Marshall, L. M. (2015). Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an evidence-based approach to diagnosis and management by clinicians. Reviews on environmental health, 30(4), 223–249. https://doi.org/10.1515/reveh-2015-0026 https://www.degruyter.com/document/doi/10.1515/reveh-2015-0026/html

Children, including adolescents

Jason LA, Katz BZ, Sunnquist M, Torres C, Cotler J, Bhatia S. The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community Based Sample. Child Youth Care Forum. 2020 Aug;49(4):563-579. doi: 10.1007/s10566-019-09543-3. Epub 2020 Jan 23 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8186295/

Rowe, P. C., Underhill, R. A., Friedman, K. J., Gurwitt, A., Medow, M. S., Schwartz, M. S., Speight, N., Stewart, J. M., Vallings, R., & Rowe, K. S. (2017). Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer. Frontiers in pediatrics, 5, 121. https://doi.org/10.3389/fped.2017.00121 https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full

Criteria and management suggestions

Canadian Consensus Criteria and treatment protocols (2003) Carruthers BM, Jain AK, De Meirleir KL, Peterson DL, Klimas NG, Lerner AM, Bested AC, Flor-Henry P, Joshi P, Powles ACP, Sherkey JA, van de Sande MI. Myalgic Encephalomyelitis/chronic fatigue syndrome: Clinical working case definition, diagnostic and treatments protocols. J Chronic Fatigue Syndr. 2003;11:7–115

US Institute of Medicine, now the Academy of Medicine, (2015) Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. https://pubmed.ncbi.nlm.nih.gov/25695122/

UK National Institute for Health and Care Excellence (NICE) guidance (2021) Press release on the launch of the new guidance, with quotes https://www.nice.org.uk/news/article/nice-me-cfs-guideline-outlines-steps-for-better-diagnosis-and-management”

Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. NICE guideline [NG206] Published 29 October, 2021. https://www.nice.org.uk/guidance/ng206 The guideline includes advice on diagnosis and management for ME/CFS, including for severe and very severe cases.

Montoya JG, Dowell TG, Mooney AE, Dimmock ME, Chu L. Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Healthcare (Basel). 2021 Oct 6;9(10):1331. doi: 10.3390/healthcare9101331. PMID: 34683011; PMCID: PMC8544443. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8544443/

Criteria only

Carruthers, B. M., van de Sande, M. I., De Meirleir, K. L., Klimas, N. G., Broderick, G., Mitchell, T., Staines, D., Powles, A. C., Speight, N., Vallings, R., Bateman, L., Baumgarten-Austrheim, B., Bell, D. S., Carlo-Stella, N., Chia, J., Darragh, A., Jo, D., Lewis, D., Light, A. R., Marshall-Gradisnik, S., … Stevens, S. (2011). Myalgic encephalomyelitis: International Consensus Criteria. Journal of internal medicine, 270(4), 327–338. https://doi.org/10.1111/j.1365-2796.2011.02428.x https://pubmed.ncbi.nlm.nih.gov/21777306/

Severely ill

Chang C-J, Hung L-Y, Kogelnik AM, Kaufman D, Aiyar RS, Chu AM, Wilhelmy J, Li P, Tannenbaum L, Xiao W, Davis RW. A Comprehensive Examination of Severely Ill ME/CFS Patients. Healthcare. 2021; 9(10):1290. https://doi.org/10.3390/healthcare9101290 https://www.mdpi.com/2227-9032/9/10/1290/htm

Montoya JG, Dowell TG, Mooney AE, Dimmock ME, Chu L. Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Healthcare (Basel). 2021 Oct 6;9(10):1331. doi: 10.3390/healthcare9101331. PMID: 34683011; PMCID: PMC8544443. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8544443/

Not categorized

Bested, A. C., & Marshall, L. M. (2015). Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an evidence-based approach to diagnosis and management by clinicians. Reviews on environmental health, 30(4), 223–249. https://doi.org/10.1515/reveh-2015-0026

Hng, K. N., Geraghty, K., & Pheby, D. (2021). An Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic Encephalomyelitis. Medicina (Kaunas, Lithuania), 57(9), 885 https://doi.org/10.3390/medicina57090885

Jason, L.A., Taylor, R.R., Plioplys, S., Stepanek, Z., & Shlaes, J. (2002). Evaluating attributions for an illness based upon the name: Chronic fatigue syndrome, myalgic encephalopathy and Florence Nightingale disease. American Journal of Community Psychology, 30, 133—148

Komaroff, A. (2019). Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome. JAMA. Published online July 5, 2019. Doi:10.1001/jama.2019.8312 https://jamanetwork.com/journals/jama/fullarticle/2737854