Primer for the public
Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) are complex, chronic, and poorly understood medical conditions. ME was first categorized as a neurological disease by the World Health Organization in 1969. CFS was first formally defined by the United States Centers for Disease Control in 1988 as a framework for researching unexplained chronic fatigue associated with a mononucleosis-like syndrome. There remains a lack of consensus among members of the medical and research communities regarding the equivalence of ME and CFS. Some believe that CFS is intended to describe the same disease entity as ME, while others believe that they are distinct conditions but with overlapping symptom profiles. In deference to this lack of consensus, the combined term 'ME/CFS' is often used.
- 1 Disease onset and lifelong illness
- 2 Disease names and acronyms around the world
- 3 Disease impact
- 4 Symptoms
- 5 Prognosis
- 6 Drugs, treatments and therapies
- 7 Different diagnostic criteria used worldwide
- 8 Notable studies
- 9 Recommended viewing
- 10 Recommended reading
- 11 Disputed therapies
- 12 History
- 13 Learn more
- 14 See also
- 15 Further reading
- 16 Other resources
- 17 References
Disease onset and lifelong illness
The disease ME/CFS is diagnosed when a person does not recover from a flu-like illness, EBV, Mononucleosis, HHV, Q fever, Virus or other infections and meets one or more diagnostic criteria for either ME, CFS or ME/CFS. Patient health is never the same and they experience numerous symptoms and disease severity which fluctuate day to day, week to week, month to month, year to year and decade to decade as well as varying symptoms and disease severity among patients.
Prognosis for ME/CFS is generally poor. See: Prognosis
Disease names and acronyms around the world
The United States and Australia usually refer to the disease as CFS, (Chronic Fatigue Syndrome). Many European countries, the United Kingdom and Ireland mostly use the name ME, (Myalgic Encephalomyelitis). Most countries as well as doctors and researchers worldwide will also use the acronym ME/CFS and a few CFS/ME. See: Defintions of ME and CFS.
The symptom Chronic fatigue (CF) should not be used in place of the name Chronic Fatigue Syndrome (CFS); this has been a source of confusion of CF the symptom and CFS the disease. CFS is a grossly misnamed disease whereas CF is a symptom of many diseases, illnesses and drug therapies. Dr. Jarred Younger explains chronic fatigue and begins by stating "Fatigue is not a disease and it is not even a symptom. So fatigue is a alarm system and the most general alarm system the body has." Webinar with Jarred Younger, Ph.D. (@6:04-7:54)
Myalgic Encephalomyelitis (ME)
Although many similar diseases have occurred for centuries, in the 1920s - 1940s there were sporadic outbreaks around the world, of both poliomyelitis, and what Dr. Melvin Ramsay called 'Benign Myalgic Encephalomyelitis' ('benign because it is disabling but not usually fatal). In 1969, the World Health Organisation included "Myalgic Encephalitis' in its 'International Classification of Diseases' (ICD), under the category 'Diseases of the Nervous System', code G93.3.
From ME to CFS
Incline Village, Lake Tahoe, NV, USA experienced an outbreak during 1984-1985. The Centers for Disease Control (CDC) were sent to investigate. Dr. Anthony Komaroff studied cases from the outbreak and eventually he and a body of clinicians settled on the name "Chronic Fatigue Syndrome". Dr. Komaroff discusses the name emerging in the documentary film Forgotten Plague.
From CFS to 'any unexplained fatigue'
Various groups invented new definitions, that required only 'medically unexplained fatigue' such as Reeves criteria and Oxford criteria. Fatigue is a common symptom in any population, with many different causes. These new definitions allowed some psychiatrists to claim that CFS could be 'cured' through exercise and positive thinking which has been promoted through the PACE trial, and that this 'cure' also applied to people who are severely ill with Myalgic Encephalomyelitis. Postviral fatigue syndrome (PVFS) is the next frontier of the psychological paradigm keeping control of an organic disease and have been laying groundwork to do so.
SEID name and diagnostic criteria
Systemic Exertion Intolerance Disease (SEID) is a diagnostic criteria proposed by the Institute of Medicine (IOM) in the Institute of Medicine report. This clinical criteria was developed for doctors in the United States to diagnose at 6 months instead of years or even decades. Doctors are encouraged to perform tests prior to six months, such as a Tilt table test or sleep study if symptoms require further investigation. Treating symptoms such as Orthostatic intolerance or a sleep disorder can begin prior to the six months needed to diagnose.
"An estimated 17-20 million people suffer from ME/CFS worldwide, and 25% of them have a very severe form of it." The 25% of patients who are severely ill are either bed-bound, wheelchair bound, or are housebound or nearly so. The ME/CFS Severely Ill, Big Data Study is focused on this 25%.
In the United States, 836,000 - 2.5 million people suffer from ME/CFS. "The total economic costs of ME/CFS are estimated at $17 to $24 billion annually." Some CFS patients can work with Job Accommodations but 1/3 to 1/2 become unemployed and many rely on SSDI/SSI.
Female to male ratio
Like many auto-immune and neuro-immune diseases where mostly women are afflicted, the ME/CFS female/male patient ratio is 6:1. Fibromyalgia has a F/M 7:1 ratio and some ME/CFS patients have this additional diagnosis.
- Post-exertional malaise (PEM) is the hallmark symptom of ME/CFS. After physical or mental exertion (which for some patients can be a shower or making out a to-do list, others grocery shopping, socializing or reading a news article, while some just walking to the mailbox, getting to the doctor or mentally following a T.V. program) there is a payback which can be delayed 24-48 hours and can last 24 hours or more. The patient will experience even greater fatigue as well as exasperating the flu-like symptoms and body pain. Every patient experiences different symptoms and symptom severity from different activities and exertion output according to how sick he or she is with the disease.
- Regarding PEM the CFIDS Association of America states: "This is a term which describes a symptom in which exercise or exertion can bring on malaise (illness). In the case of people with ME/CFS, malaise often occurs during a period some 24-72 hours after exertion. For example, in some cases, a short walk can worsen ME/CFS symptoms two days later. This lack of understanding about the delayed onset of symptoms has, in the past, made it harder to test for ME/CFS. Follow up tests, taken less than 24 hours after an initial exercise test, may show that the patient can still perform activities at the same level (before post exertional malaise has a chance to take hold)."
Core and additional symptoms (see IOM Clinicians Guide below)
US Government guides on symptoms
Canada guides on symptoms
Other symptoms, comorbids
- Neurologic impairments - ME: ICC
- Fibromyalgia, Irritable bowel syndrome, Temporomandibular joint disorder (TMJ) and Multiple Chemical Sensitivity
Expanded lists of symptoms
- At the first stage, there is an acute illness where EBV is likely responsible for most adolescents but there is no standard viral illness. The initial virus likely fades away in a week and the patient feels better and is ready for regular activities. He adds "in a person with a gradual onset of symptoms, this stage would be different."
- Second stage "occurs when the symptoms do not disappear, but persist for months to years in roughly the same severity. There is little variation day-to-day, and this time is very confusing. Many medical providers are contacted, most giving conflicting opinions varying from psychological disorders to possible exotic infections, but the tests come back normal."
- In the third stage patients will have mild, gradual improvements over years and patients adjust their lives to the symptoms. Patients may look well and recovery is thought to have taken place. Some patients will make a full recovery in 3-4 years but "recovery and improvement are completely different."
Poor long term prognosis
Dr. Bell has great concern for patients 35 years old who had become ill as teens and has been studying a group that first became ill in 1985. "Some of the young adults rated their health as “good,” while the amount of activity they could perform was minimal. They had become so used to their performance level, they accepted it as their new normal. Unfortunately, many of them, while they described their health as good, they were unable to work full time or carry on other duties." It is now understood that persons with ME/CFS do not have a good long term prognosis and it is actually poor as "full recovery from untreated CFS is rare."
Few Return to Pre-illness State of Functioning
In about 40% of people with ME/CFS the condition will improve over time, though recovery rates from the condition are generally quite low (less than 10%). The condition may also take a relapsing/remitting course, so individuals who appear to have recovered, may actually be in remission. For 5-20% of people, the condition is degenerative. Some studies suggest that prognosis is better for those with less severe symptoms, and who developed the condition at a younger age (childhood-young adulthood), though these findings are not consistent. It is clear that few people will return to their pre-illness state of health and functioning.
Drugs, treatments and therapies
There are no approved drugs, appropriate treatments or reliable therapies for ME/CFS.
Psychiatry has taken an inappropriate lead and treatment path for a biological disease. In the UK, GET and CBT are employed by ME Clinics. Exercise exacerbates symptoms and can further injure patients. Depression and anxiety drugs are utilized usually with poor and even damaging results.
Treating a biological disease as a mental illness is cost effective. The drugs are inexpensive and biomedical research is not pursued. People struck down and disabled with ME/CFS are labeled with a mental health issue; disability insurance having clauses excluding a mental health illness/disease kick in stopping any payment or shortening the payout timeframe.
Charlatans claim they can cure CFS ("There is no cure") when in reality they may be able to treat Chronic Fatigue (CF). Some people misdiagnosed and "recovered" from CFS most likely had CF or a bad year or two with Mononucleosis along with a bout or two of Influenza. These individuals were experiencing a proper immune response whereas ME/CFS is an ongoing improper immune response.
Working with government to move forward
Advocates met with senate staffers the week of March 16, 2016 and discussed research and drug development by the NIH, the CDC reinstating and increasing funding and education based on IOM recommendations and the HHS funding to develop Centers of Excellence. MEAction reports on this ongoing process.
Different diagnostic criteria used worldwide
Currently not in use
The different criteria used from one doctor to another and researcher to researcher results in confusion for doctors trying to diagnose, poor research and discord between patients, medical professionals and charitable organizations. Adding to the confusion is a clinical criteria will at times be used in research and a research criteria used by a clinician to diagnose. Many US researchers will use Fukuda (using the PEM "option") and CCC in a single research project. The NIH Post-Infectious ME/CFS Study will be using four: SEID, Fukuda, CCC and Reeves. The ME/CFS community want to participate in this study's design.
- NIH Post-Infectious ME/CFS Study is outlined by Shannon Firth; Editor Dr. Sanjay Gupta in the article "NIH Gears Up for First-Ever Chronic Fatigue Study". An Open Letter from Mary Schweitzer to Dr. Gupta about the study.
- Dr. Derek Enlander of Mount Sinai, NY has announced a study to prove or disprove exercise as treatment for ME/CFS patients. (Begin at 17:30 of video.)
- Metabolic features of chronic fatigue syndrome by the Open Medicine Foundation show blood chemical signature. ME/CFS Severely Ill, Big Data Study
- Cytokine research by Mady Hornig and Ian Lipkin show Immune Signatures. Columbia University Mailman School of Public Health (With video)
- Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder by Stanford ME/CFS Initiative
- Illness progression in chronic fatigue syndrome: a shifting immune baseline
- National Centre for Neuroimmunology and Emerging Diseases claim to have a biomarker screening test.
- Institute of Medicine report
- Forgotten Plague is a US documentary about Ryan Prior, an afflicted journalist who investigates the disease and its history and why the CDC has left millions sideline from life; available for streaming and DVD purchase. (2015)
- Unrest is a US documentary film that will air on PBS's Independent Lens in 2018. Jennifer Brea, a person with ME, directs. (2017)
Mini-doc & Short film
- Invisible Illness - Stories of Chronic Fatigue Syndrome is a Palo Alto Online, US Mini-Doc on Youtube. It documents 3 people with CFS suffering from the same disease in varying degrees of illness. (2015)
- #MillionsMissing provides a <5 min. short UK Video 'What Is M.E.?' Discusses the disease impact on several people with ME. (2016)
- Chronic Fatigue: Missing Millions (Carte Blanche DSTV) TV report, South Africa (2017)
Talks and interviews
- What happens when you have a disease doctors can't diagnose Jennifer Brea gives a TED Talk to explain her psychiatric misdiagnosis of Conversion disorder, her correct diagnosis of Myalgic encephalomyelitis, the disease impact on her life and how women are more often to receive a psychiatric misdiagnosis for a biologic disease. (2016)
- Jennifer Brea is interviewed for the upcoming BRIC Flix on her ME/CFS disease experience and her 2017 documentary film Canary in a Coal Mine (now called Unrest) at 5:30 and 10:20. (2016)
Government health organizations
- Centers for Disease Control (CDC)
- Factsheets - Pediatric Factsheets for Healthcare Professionals, Parents and Education Professionals. (2014)
- Institute of Medicine (IOM)
- Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness Report Brief on the Institute of Medicine report. (2015)
ME/CFS research foundations
- Tymes Trust (Pediatric)
- What is ME/CFS? (2013)
- Reports and Fact Sheets (2015)
- What Do You Do When a Loved One Becomes Chronically Ill? By: Suzan Jackson
- PACE trial is a highly controversial study based on GET and CBT as therapies for ME/CFS patients. Patients, caretakers, ME/CFS charities and organizations as well as many clinicians, researchers, and others oppose this study due to outcome switching and other issues. The therapies are not just useless, they are injuring patients. (See Heading: "Drugs, treatments and therapies" and Open Letters.) David Tuller has written and spoken at length about the PACE and FINE trial.
- Lightning Process A "therapy" misused for the disease ME/CFS.
- Osler's Web is a book on the early history of CFS.
- Thirty Years of Disdain picks up on the ME/CFS history where Osler's Web leaves off.
- List of news articles on ME and CFS
- Sophia Mirza's life ended due to CFS.
- UK agencies involved in implementation of the PACE trial. Disabled in Tory Britain - PACE trial
Blogs and letters
- ME/CFS is NOT Depression. Lack of energy, not desire.
- Open Letters: Patients, doctors, researchers, advocates, caretakers and other interested parties have been writing!
- IOM Report - INFECTION
- The Lipkin Study, The Vagus Nerve Infection Hypothesis and HHV-6: Kristin Loomis of the HHV-6 Foundation Talks – Pt. I - Health Rising - By: Cort Johnson - June 2014
- Definitions of ME and CFS - MEpedia
- Symptoms and diagnosis of ME/CFS - ME Association
- Chronic Fatigue Syndrome - Symptoms - Web MD
- Facts (ME/CFS) Severity
- ME/CFS in Children - by David S. Bell, MD - Open Medicine Foundation
- Pediatric ME/CFS - Massachusetts CFIDS/ME FM Association
- Chronic Fatigue vs. Chronic Fatigue Syndrome - One's a Symptom, One's a Disease - About.com Health FMS/ME/CFS By: Adrienne Dellwo
- Chronic Fatigue Versus Chronic Fatigue Syndrome What's the Difference? - About.com Health FMS/ME/CFS - By: Carol Eustice
- List of outbreaks
- The WHO and M.E. (in brief) - The Hummingbirds' Foundation for M.E.
- ME/CFS Terminology - By: Margaret Williams - April - 2009
- Diagnosis of ME/CFS - What is a Syndrome
- A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS.
- Statements of concern about CBT/GET provided for the High Court judicial review - ME Association
- Mind Games - ELLE Magazine September 2016 - Phoenix Rising - ELLE Anecdotes used to promote O'Sullivan, complain she's being trolled
- Institute of Medicine (USA); Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (10 February 2015), Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
- Raising Awareness for ME/CFS - Jan. 2011
- ME/CFS Documentary - About ME/CFS
- The 25% M.E. Group Website Support Group for Severe M.E. Sufferers
- Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care - Bio-Med Central - July 2011
- Why ME? - High Tea for ME
- Pediatric CFS - CDC
- Pediatric ME/CFS - MASS CFIDS/ME FMS
- Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness
- Disability for CFS - Phoenix Rising
- CFS - Womenshealth.gov
- Job Accommodations - MASS CFIDS
- Fact Sheet Autoimmune Disease in Women: NWHIC - Right Diagnosis - Aug 2015
- Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010
- Fibromyalgia - CDC
- What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative
- Unraveling Post-Exertional Malaise - Solve ME/CFS Initiative By: Jennifer M. Spotila, J.D. - Plus a link to all 4 parts
- Chronic Fatigue Syndrome - Symptoms - Web MD
- Post-Exertional Malaise - About.com Health - FMS/ME/CFS
- - What Health - International CFS/ME Awareness Day 2017 - CFIDS Association of America
- Myalgic encephalomyelitis: International Consensus Criteria - Wiley - Journal of International Medicine
- What is ME/CFS? - Solve ME/CFS Initiative
- Prognosis of ME/CFS – Open Medicine Foundation By: David S. Bell, MD
- Prognosis of ME/CFS – Open Medicine Foundation By: David S. Bell, MD
- Cairns, R; Hotopf, M, "A systematic review describing the prognosis of chronic fatigue syndrome" (PDF), Occupational Medicine, 2005;55: 20–31, doi:10.1093/occmed/kqi013
- Joyce, J; Hotopf, M; Wessely, Simon (1 March 1997), "The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review", QJM, 90 (3), PMID 9093600, doi:10.1093/qjmed/90.3.223
- Johnson, Cort (6 July 2013), "ME/CFS Prognosis", Health Rising
- Open Letter to Dr. Sanjay Gupta on In-House NIH Study of ME/CFS - Slightly Alive - By: Mary Schweitzer
- GET and CBT are dangerous treatments for ME patients - Petition - 38 Degrees - By: Michael Evison
- CFS or depression - what are the differences - Dr. Myhill.co.uk
- Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really? - By: David Tuller Virology Blog
- Physical Illnesses May Soon Be Labeled “Mental Disorders” - Psychology Today - Toni Bernhard, J.D.
- People with mental illness face widespread discrimination - The Guardian - David Batty
- Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability Benefits - Thoughts About ME
- Management of CFS - CDC
- #MEAction meets with Senate staffers
- Study says scientists must agree on classifying patients - By: Sasha Nimmo - #MEAction
- Positive Answers to Initial Questions re NIH Clinical Center Protocol - #MEAction - Comments Section - "Polly"
- NIH: Put ME/CFS patients at heart of research design process - Petition - #MEAction
- PETITION - Keep Psychiatry Out of NIH Study on ME/CFS - #MEAction - By: Mary Schweitzer
- NIH Gears Up for First-Ever Chronic Fatigue Study - MedPage Today
- Open Letter to Dr. Sanjay Gupta on In-House NIH Study of ME/CFS From: Mary Schweitzer
- Dr. Derek Enlander - ME/CFS Alert Ep. 77 17:30 for Exercise Study
- Scientists Discover Robust Evidence That Chronic Fatigue Syndrome Is a Biological Illness - Columbia University Mailman School of Public Health
- Are Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Immune Exhaustion Disorders? Simmaron Research - By: Cort Johnson
- Russell, Lindsey; Broderick, Gordon; Taylor, Renee; Fernandes, Henrique; Harvey, Jeanna; Barnes, Zachary; Smylie, AnneLiese; Collado, Fanny; Balbin, Elizabeth; Katz, Ben; Klimas, Nancy; Fletcher, Mary Ann (10 Mar 2016), "Illness progression in chronic fatigue syndrome: a shifting immune baseline", BMC Immunology, 17(1): 3, PMID 26965484, doi:10.1186/s12865-016-0142-3
- Chronic Fatigue Syndrome vs. Depression: One Doctor's View Lack of Energy or Lack of Desire? About.com Health FMS/ME/CFS
- Are ME/CFS & Depression The Same Thing? - Sleepy Dust
- CFS or depression - what are the differences - Dr. Myhill.co.uk