FAQs about ME 

Frequently Asked Questions

What is Myalgic Encephalomyelitis?


Myalgic Encephalomyelitis (ME), commonly known as chronic fatigue syndrome (CFS) or ME/CFS, is a systemic neuroinflammatory condition characterized by post-exertional malaise (a reduction in functioning and a severe worsening of symptoms after even minimal exertion). It is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. ME is a spectrum disease. All people with ME experience a substantial loss of physical or cognitive functioning and patients with severe cases are bedridden and require assistance for basic functioning. On average, ME patients score lower on quality of life surveys than those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure, and various cancers. ME clinicians have compared the level of disability in ME to patients with end-stage AIDS, progressive MS or congestive heart failure. The onset of ME can be sudden or gradual, and the intensity and frequency of milder symptoms can sometimes increase abruptly. Symptoms can fluctuate significantly from day-to-day, but the unpredictable progression of this disease is measured in years, not weeks or months.




How common is ME?


According to the 2015 Canadian Community Health Survey, there are 561,500* Canadians living with ME, a dramatic 37% increase from 400,000 the previous year. Worldwide the number is estimated to be 15-30 million people suffering from ME: 1 million Americans, 250,000 British people, 100,000 Australians. (Estimates vary depending on the diagnostic criteria used.) An estimated 75-85% of them are women and 80-90% of them are undiagnosed. * This number is yet to be published. Source: National ME/FM Action Network.




How is ME diagnosed?


Currently there is no reliable and agreed upon biomarker for ME, although research into a diagnostic laboratory test is promising. Research has shown that patients have consistent biological abnormalities. Diagnosis is at present made by exclusion and by using one of several diagnostic criteria. Due to lack of education and awareness about ME, many patients are undiagnosed or misdiagnosed. There are several diagnostic criteria that are used in clinical practice; the most accurate criteria include post-exertional 'malaise' or relapse following exertion. (see the FAQ below discussing the different diagnostic criteria) Patients experience delays in diagnosis due to lack of diagnostic knowledge on the part of physicians, the result of stigma, lack of education and misinformation. These delays are frequently measured in years. DIAGNOSIS AND MANAGEMENT OF MYALGIC ENCEPHALOMYELITIS AND CHRONIC FATIGUE SYNDROME Dr. David Kaufman, Internal Medicine physician at the Center for Complex Diseases Mountain View, California, and former Medical Director of Open Medicine Institute, leads this excellent Unrest​.film continuing education video for health care practitioners. Share with your health care practitioner, family or carer. "This video on the diagnosis and management of myalgic encephalomyelitis and chronic fatigue syndrome is part of the Unrest Continuing Education module, made available through the American Medical Women’s Association and Indiana University School of Medicine, and in partnership with #MEAction. US medical providers can visit: https://www.unrest.film/cme to register to watch Unrest online for free and receive Continuing Education credit." Also go to the U.S. Center for Disease Control's web pages on ME.




What are the symptoms and diagnostic criteria for ME?


There are a number of diagnostic criteria (discussed below), but we e find the Myalgic encephalomyelitis: International Consensus Criteria (2011) to be the most comprehensive: Post Exertional Malaise (PEM) PEM, also called Post-exertional neuroimmune exhaustion (PENE), is a pathological inability to produce sufficient energy on demand. This primary feature of ME is evidenced by post-exertional exhaustion and exacerbation of symptoms that may occur immediately, but is frequently delayed by hours or days. Recovery from PEM is prolonged, usually 24 hours or longer. Neurological impairments At least one from three of the following symptoms: Neurocognitive impairments

  1. Difficulty processing information: slowed thought, impaired concentration e.g. confusion, disorientation, cognitive overload, difficulty with making decisions, slowed speech, acquired or exertional dyslexia
  2. Short-term memory loss: e.g. difficulty remembering what one wanted to say, what one was saying, retrieving words, recalling information, poor working memory
Pain
  1. Headaches: e.g. chronic, generalized headaches often involve aching of the eyes, behind the eyes or back of the head that may be associated with cervical muscle tension; migraine; tension headaches
  2. Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is non-inflammatory in nature and often migrates. e.g. generalized hyperalgesia, widespread pain (may meet fibromyalgia criteria), myofascial or radiating pain
Sleep disturbance
  1. Disturbed sleep patterns: e.g. insomnia, prolonged sleep including naps, sleeping most of the day and being awake most of the night, frequent awakenings, waking much earlier than before illness onset, vivid dreams/nightmares
  2. Unrefreshed sleep: e.g. wake feeling exhausted regardless of duration of sleep, day-time sleepiness
Neurosensory, perceptual and motor disturbances
  1. Neurosensory and perceptual: e.g. inability to focus vision, sensitivity to light, noise, vibration, odour, taste and touch; impaired depth perception
  2. Motor: e.g. muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia
Immune, Gastrointestinal and Genitourinary Impairments At least one symptom from three of the following five symptom categories:
  • Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion e.g. sore throat, sinusitis, cervical and/or axillary lymph nodes may enlarge or be tender on palpation
  • Susceptibility to viral infections with prolonged recovery periods
  • Gastro-intestinal tract: e.g. nausea, abdominal pain, bloating, irritable bowel syndrome
  • Genitourinary: e.g. urinary urgency or frequency, nocturia
  • Sensitivities to food, medications, odours or chemicals
Energy Production/Transportation Impairments At least one symptom:
  • Cardiovascular: e.g. inability to tolerate an upright position - orthostatic intolerance, neurally mediated hypotension, postural orthostatic tachycardia syndrome, palpitations with or without cardiac arrhythmias, light-headedness/dizziness
  • Respiratory: e.g. air hunger, laboured breathing, fatigue of chest wall muscles
  • Loss of thermostatic stability: e.g. subnormal body temperature, marked diurnal fluctuations; sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities
  • Intolerance of extremes of temperature
Paediatric considerations Symptoms may progress more slowly in children than in teenagers or adults, but fluctuation and severity hierarchy of numerous prominent symptoms tend to vary more rapidly and dramatically than in adults.. In addition to post-exertional neuroimmune exhaustion, the most prominent symptoms tend to be neurological: headaches, cognitive impairments and sleep disturbances.
  • Headaches: Severe or chronic headaches are often debilitating. Migraine may be accompanied by a rapid drop in temperature, shaking, vomiting, diarrhoea and severe weakness.
  • Neurocognitive impairments: Difficulty focusing eyes and reading are common. Children may become dyslexic, which may only be evident when fatigued. Slow processing of information makes it difficult to follow auditory instructions or take notes. All cognitive impairments worsen with physical or mental exertion. Young people will not be able to maintain a full school programme.
  • Pain may seem erratic and migrate quickly. Joint hypermobility is common.
Exclusions As in all diagnoses, exclusion of alternate diagnoses is achieved by the patient’s history, physical examination, and laboratory/biomarker testing as indicated. It is possible to have more than one diagnosis but it is important that each be identified and treated. Primary psychiatric disorders, somatoform disorder and substance abuse are excluded. Paediatric:‘primary’ school phobia. Comorbid entities Fibromyalgia, myofascial pain syndrome, temporomandibular joint syndrome, irritable bowel syndrome, interstitial cystitis, Raynaud’s phenomenon, prolapsed mitral valve, migraines, allergies, multiple chemical sensitivities, Hashimoto’s thyroiditis, Sicca syndrome, reactive depression. Migraine and irritable bowel syndrome may precede ME but then become associated with it.




What are the treatments for ME?


There are currently no approved treatments for ME. However, it is possible to manage symptoms to increase quality of life by improving sleep, orthostatic intolerance and other symptoms. Caution should be applied to exercise as it can be harmful to patients (see information on exercise and PACE trial below). Cautions regarding exercise and ME: The Workwell Foundation is a research organisation, which focuses on issues concerning the functional aspects of chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS). Workwell developed the groundbreaking 2-Day cardiopulmonary exercise testing (CPET), which has been used to identify and study the unique symptom of post exertional malaise (PEM) in ME patients. This important letter from the Workwell Foundation cautions about exercise for ME patients, and includes citations to relevant studies: ME/CFS GET Letter to Health Care Providers​. This recent article critically examines the findings of the PACE trials "and more generally discusses the behavioral intervention literature in ME/CFS. Finally, we briefly describe a pragmatic clinical approach for these often-marginalized patients." Rethinking the Standard of Care for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (https://rdcu.be/bU8Q8), Fred Friedberg, Madison Sunnquist, Luis Nacul, Journal of General Internal Medicine, 19 October 2019. ____________________________________ DIAGNOSIS AND MANAGEMENT OF MYALGIC ENCEPHALOMYELITIS AND CHRONIC FATIGUE SYNDROME Dr. David Kaufman, Internal Medicine physician at the Center for Complex Diseases Mountain View, California, and former Medical Director of Open Medicine Institute, leads this excellent Unrest​.film continuing education video for health care practitioners. Share with your health care practitioner, family or carer. "This video on the diagnosis and management of myalgic encephalomyelitis and chronic fatigue syndrome is part of the Unrest Continuing Education module, made available through the American Medical Women’s Association and Indiana University School of Medicine, and in partnership with #MEAction. US medical providers can visit: https://www.unrest.film/cme to register to watch Unrest online for free and receive Continuing Education credit." ____________________________________ Some links to treatment approaches by leading ME clinicians: Stanford Medicine ME/CFS Initiative: https://med.stanford.edu/chronicfatiguesyndrome.html Dr Anthony Komaroff (Harvard Medical School) on ME/CFS Treatment and Research https://www.youtube.com/watch?v=xCyvAqULXFg Dr Nancy Klimas on ME/CFS Research, Treatment https://www.youtube.com/watch?v=v0gm5gwM5aU




What are the different ME diagnostic criteria?


2017 U.S. Center for Disease Control (CDC). Updated in July 2017 in response to the IOM Report on ME/CFS 2015 National Academy of Medicine Criteria (also known as IOM criteria). Was meant to be a clinical definition. Some scientists believe it is too inclusive. Produced a simpler criteria and a new name for the disease: SEID (Systemic exertion intolerance disease). 2011 ME International Consensus Criteria (ICC). Based on the Canadian Consensus Criteria, the ICC is the most comprehensive and restrictive of the diagnostic criteria. Preferred by many researchers. 2007 The Nightingale Definition (updated 2016). Developed by Dr. Byron Hyde, this definition distinguishes M.E. from Chronic Fatigue Syndrome (CFS), with Primary M.E. defined as an epidemic and sporadic illness caused by many enteroviruses. 2003 Canadian Consensus Criteria (CCC). Most commonly used and most respected. Referenced by Public Health Agency of Canada (PHAC) 1994 Fukuda Criteria. Overly inclusive, does not require post-exertional malaise 1991 Oxford Criteria. Used by PACE trial authors 1988 Holmes Criteria 1981 Ramsey Criteria Comparison of Canadian Consensus Criteria and SEID The BC Women's Hospital's Complex Chronic Diseases Program has created this clear document which compares the CCC and SEID: https://drive.google.com/file/d/0B7bF4u582CXSQlBfenlGZWg5LWM/view Case definition and prevalence Depending on the case definition used, the prevalence of ME and CFS can vary between 0.5 and 2.5 %. This means that the most lax definition includes patients who have fatigue but do not have the essential features of ME. The negative impact on research results cannot be overestimated, as seen in the now debunked PACE trials, in which the Oxford definition was used (see below). Here is an excellent article on How have selection bias and disease misclassification undermined the validity of myalgic encephalomyelitis/chronic fatigue syndrome studies? Dr Leonard Jason and his team have done a significant amount of work in regards to case definition. Here is his March 2017 Presentation on prevalence and case definition https://youtu.be/KfKJK1mnJvM Other references Current Case Definitions and Diagnostic Criteria, Terminology, and Symptom Constructs and Clusters Contrasting Case Definitions: The M\E International Consensus Criteria vs. the Fukuda et al. CFS Criteria




Why are there several names for the disease and why is there controversy about the name?


The term, Myalgic Encephalomyelitis, was first used in the 1950's following an outbreak at the Royal Free Hospital in the UK. In the late 1980's, a few years after outbreaks in Lake Tahoe and in rural New York State, CDC and NIH officials insufficiently investigated the reported outbreaks that affected mostly women. The officials deemed the patients and their physician 'hysterical', and decided to rename this illness 'Chronic Fatigue Syndrome'. ( New York Times, 1987) There have been a few attempts at renaming the illness: Low Natural Killer Cell Disease, CFIDS (Chronic Fatigue Immune Dysfunction Syndrome), and the latest suggestion from the Institute of Medicine, SEID (Systemic Exertion Intolerance). You may also see ME/CFS in the literature, in an effort to please everyone, the acronym for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. Many experts consider ME and CFS to be separate diseases, adding further confusion to the field and in fact, many consider Chronic Fatigue Syndrome to be simply chronically tired. For further information on this issue:




What about the stigma, how widespread is it?


Sickness doesn’t terrify me. Death doesn’t terrify me. What terrifies me is that you can disappear because someone’s telling the wrong story about you.” Jennifer Brea, Unrest (documentary) In an interview in the Miami Herald in 2009, internationally reknowned ME expert, Dr. Nancy Klimas said: "I've had patients who met posttraumatic stress disorder criteria, where their trauma was their interaction with their physician around this illness. They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD." Stigma is an enormous issue for ME patients. In addition to the stigma of having a chronic illness, this disease that has been incorrectly perceived to be psychosomatic and described as 'all in your head'. The patient may appear well with symptoms only presenting after a delayed response to exertion. It is not uncommon for patients to be told ‘but you look good’. Patients are constantly confronted by disbelief of their illness and the repercussions of this disbelief:

  • Lack of access to quality health care - There are few primary physicians and specialists familiar with ME and no specific medical specialty covering ME. In Vancouver, there is the Complex Chronic Diseases Program, which currently has a two year wait list. The only alternative is through one private pay doctor. There are currently no other MSP doctors in the province who specialise in ME.
  • ME in Emergency Departments: A recently published U.S. study confirms the experiences with Emergency Departments that our BC community has repeatedly shared with our Society. The study concluded that "A barrier to care was the lack of knowledge of ED staff about CFS [also known as ME, myalgic encephalomyelitis, ME/CFS], and focus on psychosomatic etiology so that 43% of patients were told, “It is all in your head”. " Timbol, Christian & Baraniuk, James. (2019). Chronic fatigue syndrome in the emergency department. Open Access Emergency Medicine. Volume 11. 15-28. 10.2147/OAEM.S176843.
  • Lack of doctor education - Inadequate representation of ME and CFS in medical education results in improper diagnosis and lack of medical support for patients. In many cases, the result is shaming, lack of investigation, and prescription of inappropriate and dangerous treatments such as CBT and GET (see information on PACE trial below).
  • Stigma and a lack of diagnosis also influences families belief that patient is really ill and not merely malingering or suffering from depression.
  • Scientific research - The National ME/FM Action Network has estimated that from 2016-2017, the Canadian Institutes of Health Research allocated only 11 cents per patient for ME research, as contrasted with $346.30 for Parkinson’s Disease ( see full comparison chart here). Scientists have been told it would be a 'career suicide' to enter the field. Thanks to the work of dedicated researchers, clinicians and activists, there is hope that this may be changing.
CTV coverage: Stigmatized Chronic Fatigue Syndrome sufferers seek recognition




How disabling is the illness?


ME is a spectrum disease. All people with ME experience a substantial loss of physical or cognitive functioning, but there is a wide spectrum of severity, ranging from patients able to work but having to cut out their social lives, patients unable to work, housebound patients, to the most severe patients that are unable to tolerate light, sound or touch and totally bedridden, relying on parenteral nutrition to survive. On average, ME patients score more poorly on quality of life surveys than those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure and some cancers. ​In a study published in March 2018, Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls, researchers concluded that: people with ME/CFS were measurably more disabled than PWMS or HCs in this study population. Furthermore, employment and income data are consistent with loss of functional status. These findings should encourage the health community to recognise the disabling effects of ME/CFS, to advocate for the needs of people with ME/CFS, and to investigate strategies to address the cost of the disease to both individuals and society. It is important to keep in mind that the onset of ME can be either sudden or gradual and the intensity and frequency of milder symptoms can sometimes increase abruptly. Symptoms can fluctuate significantly from day-to-day, but the unpredictable progression of this disease is measured in years, not weeks or months. ME clinicians have compared the level of disability in ME to patients with end-stage AIDS, progressive MS or congestive heart failure. It is to be noted that the most severe patients often get the least care. Patients simply stop seeing doctors because their doctors do not believe them or their doctors cannot understand how they could possibly be so sick with such a ‘benign’ disease..




What medical specialty does it fall under?


ME does not belong to any medical specialty. It means that no one is forced to learn about ME, no specialty is forced to discuss the illness in medical conferences. It means that for the most part, patients rely to their family physician to understand the intricacies of the diagnosis and possible treatments, which they feel gets complicated quickly for a 7 minutes appointment. It also means that the family physician is responsible to fill out disability papers when they have little knowledge about the illness and the issues surrounding disability insurance and government programs.




What is the usual course of illness?


Typically, a patient will get an infection (e.g. flu, mononucleosis) and they do not recover from that initial infection. Following the initial stages of infection, fatigue and sore lymph nodes, sore throat are common, and then other symptoms such as orthostatic intolerance and cognitive issues start developing. People can also present with a gradual onset without evidence of a triggering event. Some patients will have a relapsing and remitting course, where they can have periods of well-being, followed by periods (weeks, months, years) of illness where they experience substantial loss of physical or cognitive functioning. Others will have a much reduced baseline where they function only at 10-15% of their normal. Very few recover from myalgic encephalomyelitis.




Which WHO International Classification of Diseases (ICD) category covers ME?


The ICD version 10 lists "benign myalgic encephalomyelitis" under G93.3 Post Viral Fatigue Syndrome




What is the PACE trial and why does it matter so much in the history of ME?


The PACE Trial (short for "Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation") was a large-scale trial of treatments for people with myalgic encephalomyelitis. The study compared standardised specialist medical care (SMC) alone to SMC plus Adaptive Pacing Therapy (APT), Cognitive Behavioral (CBT), or Graded Exercise Therapy (GET). The researchers hypothesized and reported that the CBT and GET treatment groups would be superior to SMC, a claim that has proved controversial. The trial cost £5 million, and is the most expensive piece of ME research ever conducted. It has dominated clinical policy, in both government funded health care and private medical insurance, in the United Kingdom and other countries. The PACE trial and other studies that use the Oxford criteria for diagnosis of ME/CFS have had major international impact on popular perceptions of the disease and on public policies toward treatment and research. Published in 2011, the PACE trial has been vehemently criticized by both patients and experts in the field. Major criticisms include:

  • The use of an overly broad case definition (Oxford) which included patients who might have been transiently fatigued or depressed.
  • The authors replaced their protocol-specified main outcome and recovery criteria part-way through the trial. The authors reported success when in reality there was no significant differences between the groups. Further, these results were reported as effective treatments in Cochrane reviews, which is still 'live' to this day.
  • They used subjective outcome measures, instead of objective measurement such as an activity measuring device or 6 minutes walking test.
  • The authors did not disclose to their subjects that they may have conflicts of interests, including receiving money from the insurance companies.
  • They issued a newsletter to the patients halfway into the trial boasting the success of two of their preferred treatment arms, CBT and GET, potentially influencing patient perceptions and outcomes.
  • They spent over £200,000 in lawyer fees to prevent the general public and other clinicians and researchers from getting access to de-identified data which would allow scrutiny of this trial. In early 2017, they lost this appeal and the authors were forced to release some of their data.
For a recent article on this issue: Rethinking the Standard of Care for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fred Friedberg, Madison Sunnquist, Luis Nacul, 21 October 2019, Journal of General Internal Medicine. For a full discussion of the history, issues and publications on the PACE Trial: Journal of Health Psychology - Special issue on the PACE Trial, August 2017 #MEPedial: PACE Trial An excellent comprehensive Comprehensive report by Mary Dimmock about the flawed science that has led to the recommendation of CBT and GET for treatment of ME/CFS: The Failure of Clinical Guidance for People With ME
Good article by Steven Lubet, Williams Memorial Professor of Law, Northwestern University: How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma




What about Cochrane and Up-to-Date recommendations for CBT and graded exercise therapy?


Cochrane (previously called the Cochrane Collaboration) is an independent, non-profit organization run by volunteers around the world which conducts systematic reviews of randomized controlled trials of health-care interventions and diagnostic tests, which it publishes in The Cochrane Library. Cochrane lists chronic fatigue syndrome under its "neurology" and "mental health" categories. It has published various reviews assessing treatments for chronic fatigue syndrome ( 2016, 2014, 2008). The Cochrane reviewers included many investigators and collaborators of the controversial PACE trial that were heavily biased towards Cognitive Behavioral Therapy and Graded Exercise therapies. Further, the Cochrane review excluded any papers pertaining to exercise physiology by ME experts (e.g. Workwell Foundation publications, Betsy Keller) The authors and editors of the Up-to-date review were not ME experts and had not attended international conferences. Since the ME community is very small, this is a great concern. From a patient perspective, Up-to-date review should not be trusted in providing accurate information to physicians. For more information: http://me-pedia.org/wiki/Cochrane An excellent comprehensive Comprehensive report by Mary Dimmock about the flawed science that has led to the recommendation of CBT and GET for treatment of ME/CFS: The Failure of Clinical Guidance for People With ME




What are the best resources to learn more about ME?


TED talk by Jennifer Brea. She is the director of the film Unrest, which is likely to be presented to medical students in the fall. (Video) Unrest - award-winning feature documentary by ME patient Jennifer Brea. Jennifer Brea is about to marry the love of her life when she’s struck down by a fever that leaves her bedridden. When doctors tell her “it’s all in her head,” she turns her camera on herself and her community as she looks for answers and fights for a cure.(Video) After Unrest: is a short documentary about Myalgic Encephalomyelitis (also known as ME/CFS or chronic fatigue syndrome) created by Australian ME patient, Ketra Wooding. This documentary tells Ketra’s story, and includes talks by health care professionals that have helped Ketra with her illness. It touches on current research and also features Australian patients, their stories and perspectives on this all too common disease. It provides a toolbox of information to help practitioners, patients and families alike. Carte Blanche Report on ME/CFS. For an excellent, comprehensive report on ME, watch this "Millions Missing" report on Carte Blanche Blanche South Africa's M-Net pay-channel’s flagship magazine and actuality programme, 20 Feb 2017. ​Includes interviews with patients, Ron Davis, David Tuller. (Video) History of the disease: Osler's Web by Hillary Johnson (book, likely available in public library) Thirty years of Disdain by Mary Dimmock and her son, 230 pages file, broken link. Ask if you are interested and I will ask Mary. Case definition: Canadian Consensus Criteria (the most used in research now) International Consensus Criteria (2011) (stricter than Canadian Criteria) IOM Criteria (2015) Chronic Fatigue Syndrome and Myalgic Encephalomyelitis: Toward An Empirical Case Definition (Dr Leonard Jason) (he compares all the definitions) Guidelines: FDA guidance for drug development Exercise and ME: Inability of myalgic encephalomyelitis/chronic fatigue syndrome patients to reproduce VO2peak indicates functional impairment Postexertional malaise in women with chronic fatigue syndrome Discriminative Validity of Metabolic and Workload Measurements for Identifying People With Chronic Fatigue Syndrome A Pair of Identical Twins Discordant for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Differ in Physiological Parameters and Gut Microbiome Composition




Where can I find the best research on ME?


Visit our Research Page





 

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