Primer for the public

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Primer for the public offers a broad audience, an abundance of detailed information on 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.

Disease onset and course of illness[edit]

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.[1][2][3] "Occasionally, ME/CFS has been triggered by environmental toxins, the receipt of an immunizing injection, or surviving a major trauma."[4] 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.[5][6][7]

Female to male ratio[edit]

Like many auto-immune and neuro-immune diseases where mostly women are afflicted,[8] the ME/CFS female/male patient ratio is 6:1.[9] Fibromyalgia has a F/M 7:1 ratio[10] and some ME/CFS patients have this additional diagnosis.[11][12]

Pediatric ME/CFS[edit]

Children are also afflicted with ME/CFS.[13][14] See: Pediatric.

Prognosis[edit]

Prognosis for ME/CFS is generally poor. See: Prognosis

Disease names and acronyms around the world[edit]

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: Definitions 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.[15][16] 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)[edit]

Although many similar diseases have occurred for centuries, in the 1920s - 1940s there were sporadic outbreaks around the world[17], 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.[18][19]

From ME to CFS[edit]

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".[20] Dr. Komaroff discusses the name emerging in the documentary film Forgotten Plague.

From CFS to 'any unexplained fatigue'[edit]

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.[21][22] 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.[23]

SEID name and diagnostic criteria[edit]

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.[24]

Disease impact[edit]

"An estimated 17-20 million people suffer from ME/CFS worldwide, and 25% of them have a very severe form of it."[25][26] The 25% of patients who are severely ill are either bed-bound, wheelchair bound, or are housebound or nearly so.[27] The ME/CFS Severely Ill, Big Data Study is focused on this 25%.

All races and cultures are afflicted with ME/CFS.[28][29] Children and adolescents are also diagnosed.[30][31]

U.S.[edit]

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."[32] Some CFS patients can work with Job Accommodations but 1/3 to 1/2 become unemployed and many rely on SSDI/SSI.[33][34][35]

Female to male ratio[edit]

Like many auto-immune and neuro-immune diseases where mostly women are afflicted,[36] the ME/CFS female/male patient ratio is 6:1.[37] Fibromyalgia has a F/M 7:1 ratio[38] and some ME/CFS patients have this additional diagnosis.[39][40]

Jennifer Brea gives a WMC Live radio interview addressing F/M auto-immune ratio and the disease at 5:00.

Symptoms[edit]

Hallmark symptom[edit]

  • 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 exasperate 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.[41][42][43]


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)."[44]

Core and additional symptoms (see IOM Clinicians Guide below)[edit]

US Government guides on symptoms[edit]

Canada guides on symptoms[edit]

Other symptoms, comorbids[edit]

Expanded lists of symptoms[edit]

Prognosis[edit]

Three stages[edit]

Dr. David Bell, who serves on the Scientific Advisory Board for the Open Medicine Foundation, discusses three stages of the disease in the article Prognosis of ME/CFS.

  • 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."[47]

Poor long-term prognosis[edit]

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."[48]

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.[49][50][51]

Drugs, treatments and therapies[edit]

There are no approved drugs, appropriate treatments or reliable therapies for ME/CFS.

Controversy[edit]

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.[52][53] Depression and anxiety drugs are utilized usually with poor and even damaging results.[54]

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.[55][56][57][58]

Charlatans claim they can cure CFS ("There is no cure"[59]) 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[edit]

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.[60] MEAction reports on this ongoing process.

Different diagnostic criteria used worldwide[edit]

Currently used[edit]

Currently not in use[edit]

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.[61] The NIH Post-Infectious ME/CFS Study will be using four: SEID, Fukuda, CCC and Reeves.[62] The ME/CFS community want to participate in this study's design.[63][64]

Notable studies[edit]

Current[edit]

Completed[edit]

Recommended viewing[edit]

Documentary[edit]

  • 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[edit]

Shorts[edit]

News media[edit]

Talks and interviews[edit]

  • 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)

Recommended reading[edit]

Government health organizations[edit]

USA
Centers for Disease Control (CDC)
National Institutes of Health (NIH)
Institute of Medicine (IOM)

ME/CFS research foundations[edit]

UK
Invest in ME
USA
Open Medicine Foundation (OMF)

ME/CFS organizations[edit]

Australia
Emerge Australia
UK
ME Association
Tymes Trust (Pediatric)
USA
Massachusetts CFIDS/ME & FM Association
Solve ME/CFS
International
MEAction

Other organizations[edit]

National Organization for Rare Disorders (NORD)

Other reading[edit]

Disputed therapies[edit]

  • 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.

History[edit]

Learn more[edit]

See also[edit]

Further reading[edit]

Blogs and letters[edit]

  • ME/CFS is NOT Depression. Lack of energy, not desire.[71][72][73]
  • Open Letters: Patients, doctors, researchers, advocates, caretakers and other interested parties have been writing!

Other resources[edit]

References[edit]

  1. IOM Report - INFECTION
  2. 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
  3. Definitions of ME and CFS - MEpedia
  4. Chronic Fatigue Syndrome Myalgic Encephalomyelitis - Primer for Clinical Practitioners - 2014 Edition - Massachusettes CFIDS/FM Assoc
  5. Symptoms and diagnosis of ME/CFS - ME Association
  6. Chronic Fatigue Syndrome - Symptoms - Web MD
  7. Facts (ME/CFS) Severity
  8. Fact Sheet Autoimmune Disease in Women: NWHIC - Right Diagnosis - Aug 2015
  9. Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010
  10. Fibromyalgia:Epidemiology - Medscape
  11. Fibromyalgia - CDC
  12. What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative
  13. ME/CFS in Children - by David S. Bell, MD - Open Medicine Foundation
  14. Pediatric ME/CFS - Massachusetts CFIDS/ME FM Association
  15. Chronic Fatigue vs. Chronic Fatigue Syndrome - One's a Symptom, One's a Disease - About.com Health FMS/ME/CFS By Adrienne Dellwo
  16. Chronic Fatigue Versus Chronic Fatigue Syndrome What's the Difference? - About.com Health FMS/ME/CFS - By Carol Eustice
  17. List of outbreaks
  18. The WHO and M.E. (in brief) - The Hummingbirds' Foundation for M.E.
  19. ME/CFS Terminology - By: Margaret Williams - April - 2009
  20. Diagnosis of ME/CFS - What is a Syndrome
  21. A review on cognitive behavioral 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.
  22. Statements of concern about CBT/GET provided for the High Court judicial review - ME Association
  23. Mind Games - ELLE Magazine September 2016 - Phoenix Rising - ELLE Anecdotes used to promote O'Sullivan, complain she's being trolled
  24. 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 
  25. Raising Awareness for ME/CFS - Jan. 2011
  26. ME/CFS Documentary - About ME/CFS
  27. The 25% M.E. Group Website Support Group for Severe M.E. Sufferers
  28. 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
  29. Why ME? - High Tea for ME
  30. Pediatric CFS - CDC
  31. Pediatric ME/CFS - MASS CFIDS/ME FMS
  32. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness
  33. Disability for CFS - Phoenix Rising
  34. CFS - Womenshealth.gov
  35. Job Accommodations - MASS CFIDS
  36. Fact Sheet Autoimmune Disease in Women: NWHIC - Right Diagnosis - Aug 2015
  37. Chronic fatigue syndrome/myalgic encephalomyelitis: an update. - PUBMed Dec. 2010
  38. Fibromyalgia:Epidemiology - Medscape
  39. Fibromyalgia - CDC
  40. What Is ME/CFS (Fibromyalgia) Solve ME/CFS Initiative
  41. Unraveling Post-Exertional Malaise - Solve ME/CFS Initiative By: Jennifer M. Spotila, J.D. - Plus a link to all 4 parts
  42. Chronic Fatigue Syndrome - Symptoms - Web MD
  43. Post-Exertional Malaise - About.com Health - FMS/ME/CFS
  44. - What Health - International CFS/ME Awareness Day 2017 - CFIDS Association of America
  45. Myalgic encephalomyelitis: International Consensus Criteria - Wiley - Journal of International Medicine
  46. What is ME/CFS? - Solve ME/CFS Initiative
  47. Prognosis of ME/CFS – Open Medicine Foundation By David S. Bell, MD
  48. Prognosis of ME/CFS – Open Medicine Foundation By David S. Bell, MD
  49. 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 
  50. 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 
  51. Johnson, Cort (6 July 2013), "ME/CFS Prognosis", Health Rising 
  52. Open Letter to Dr. Sanjay Gupta on In-House NIH Study of ME/CFS - Slightly Alive - By: Mary Schweitzer
  53. GET and CBT are dangerous treatments for ME patients - Petition - 38 Degrees - By Michael Evison
  54. CFS or depression - what are the differences - Dr. Myhill.co.uk
  55. Trial by error, Continued: PACE Team’s Work for Insurance Companies Is “Not Related” to PACE. Really? - By: David Tuller Virology Blog
  56. Physical Illnesses May Soon Be Labeled “Mental Disorders” - Psychology Today - Toni Bernhard, J.D.
  57. People with mental illness face widespread discrimination - The Guardian - David Batty
  58. Keep an Eye on Your Walitt: NIH Study Poses Dramatic Risk to Long-Term Disability Benefits - Thoughts About ME
  59. Management of CFS - CDC
  60. #MEAction meets with Senate staffers
  61. Study says scientists must agree on classifying patients - By: Sasha Nimmo - #MEAction
  62. Positive Answers to Initial Questions re NIH Clinical Center Protocol - #MEAction - Comments Section - "Polly"
  63. NIH: Put ME/CFS patients at heart of research design process - Petition - #MEAction
  64. PETITION - Keep Psychiatry Out of NIH Study on ME/CFS - #MEAction - By: Mary Schweitzer
  65. NIH Gears Up for First-Ever Chronic Fatigue Study - MedPage Today
  66. Open Letter to Dr. Sanjay Gupta on In-House NIH Study of ME/CFS From Mary Schweitzer
  67. Dr. Derek Enlander - ME/CFS Alert Ep. 77 17:30 for Exercise Study
  68. Scientists Discover Robust Evidence That Chronic Fatigue Syndrome Is a Biological Illness - Columbia University Mailman School of Public Health
  69. Are Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Immune Exhaustion Disorders? Simmaron Research - By: Cort Johnson
  70. 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 
  71. Chronic Fatigue Syndrome vs. Depression: One Doctor's View Lack of Energy or Lack of Desire? About.com Health FMS/ME/CFS
  72. Are ME/CFS & Depression The Same Thing? - Sleepy Dust
  73. CFS or depression - what are the differences - Dr. Myhill.co.uk


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From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history