Talk:ME/CFS

References

I just did some copyediting and noticed that we're using some not-necessarily-reliable sources like blogs and ProHealth. Since we currently have no scientific guidelines up, I've left these untouched. I think the gist of what they present is correct, even if it may come from a specific perspective, but if our scientific guidelines later insist on peer-reviewed sources and the like, these will obviously need to be removed, or better sources found. – Robin Hood  ^(talk) 13:33, 9 February 2016 (PST)

Moved from main page

Chronic fatigue syndrome and ME/CFS were unnecessarily duplicative of myalgic encephalomyelitis, the main disease page.

History

Myalgic encephalomyelitis

• 1934, The first recorded outbreak of Myalgic Encephalomyelitis was at Los Angeles County Hospital in 1934.

• 1956, The name Myalgic Encephalomyelitis first appeared in medical literature.

• 1969, The World Health Organization (WHO) recognized ME as a distinct disorder and classified it as a specific neurological disorder.

Chronic fatigue syndrome

• 1984, The 1984 Incline Village chronic fatigue syndrome outbreak was an outbreak that lead to the name Chronic Fatigue Syndrome.
• 1980's, The term CFS was first used in medical literature in the United States
• 1988, The name change occurred when the Centers for Disease Control and Prevention (CDC) literature began using the name CFS.

ME and CFS used interchangeably

• 1990's - 2000's, "The criteria focused on fatigue and not as much on the encephalitic (inflammation of the brain) features of the disorder." Doctors began using ME and CFS interchangeably due to the broad CFS definition.

The ME name was not fully accepted by the medical and government health agencies while CFS was not found to be acceptable by patients and some health practitioners.

ME/CFS criteria developed

• 2003, The Canadian Consensus Criteria (CCC) developed was the first time the ME/CFS name and acronym was used.

• 2006, Rich Carson, founder of ProHealth, started a name change campaign.

• 2007, The term ME/CFS was proposed at the International IACFS/ME Research and Clinical Conference in Oslo, Norway but is referred to as CFS/ME in Europe.

• 2008, Invest in ME called for unity in using the name.

Why the acronym ME/CFS is used

• Solve ME/CFS answer in 'Reader Questions': "Why does your organization call this disease ME/CFS?" in its The Solve ME/CFS Chronicle Winter 2017 Edition, (Pg. 18.)

Excerpt

ME/CFS is a hybrid term for a community and disease in transition. It combines the older and more broadly recognized “CFS” with the less stigmatized “ME,” which is becoming more commonly used. Many governments and health authorities have recently adopted the term “ME/CFS,” which has evolved to become the most accessible term to meet the needs of the broadest audience. The Solve ME/CFS Initiative adopted this name so that our organization would be accessible and understandable to medical, academic, patient, and government audiences alike.

• What is ME/CFS? By the Open Medicine Foundation

Number afflicted and lost wages

ME/CFS afflicts up to 2.5 million Americans (and an estimated 17 million worldwide) and in the USA the total economic costs are $17-24 billion a year. The US numbers are from the Institute of Medicine report (IOM report) which used the Fukuda criteria (for defining CFS in research) and CCC (which defines either ME or CFS in research or in a clinical setting).

Criteria comparison

• 2016, Chronic Fatigue Syndrome versus Systemic Exertion Intolerance Disease (Pg. 13 Table 1), shows out of 795 participants, the following percentages of patients met different criteria:

From CFS vs SEID, Pg. 13

Table 1

88% SEID - (Developed by the IOM report) PEM Required

92% Fukuda criteria - (CFS) (Used by committee that developed IOM report) PEM Optional

76% CCC - (ME/CFS) (Used by committee that developed the IOM report) PEM Optional

61% Four-symptom criteria - (ME/CFS) PEM Required

60% ICC - (ME) PEM Required

There are fewer ME-ICC patients and the numbers of afflicted and financial impact from the IOM report are not correctly attributed to ME or CFS but instead to ME/CFS as Fukuda criteria and CCC were used by the authors of the IOM report.

• 2017, Patients diagnosed with Myalgic encephalomyelitis/chronic fatigue syndrome also fit systemic exertion intolerance disease criteria, results and conclusion:

Excerpt

Results: At 6 months of illness, SEID criteria identified 72% of all subjects, similar to when Fukuda criteria (79%) or the CCC (71%) were used, whereas the ME-ICC selected for a significantly lower percentage (61%, p < .001). When severity/frequency thresholds were added to the Fukuda criteria, CCC and ME-ICC, the percentage of these subjects also fitting SEID criteria increased to 93%, 97%, and 95%. Eighty-seven percent of SEID subjects endorsed cognitive impairment and 92%, OI; 79% experienced both symptoms.

Conclusions: SEID criteria categorize a similar percentage of subjects as Fukuda criteria early in the course of ME/CFS and contain the majority of subjects identified using other criteria while requiring fewer symptoms. The advantage of SEID may be in its ease of use.

When Fukuda criteria, CCC and ME-ICC have severity/frequency thresholds added patients will meet SEID criteria. This is advantageous in a clinical setting as patients can be diagnosed by a Primary/GP/Family Doctor using SEID and then the patient can go through the process of receiving a CFS, ME/CFS or ME diagnosis from a doctor/researcher using Fukuda, CCC or ME-ICC until a Biomarker is found.

Controversy

• 2014, Video ME/CFS Diagnosis and Name with Dr. Nancy Klimas who was one of the authors of CCC.

• It is believed by some in the ME, CFS and ME/CFS community that the name Chronic Fatigue Syndrome and then the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome name are a product of medical insurance companies, possibly in an effort to define the disorder as a behavioral illness similar to hypochondria or malingering. Insurance companies could benefit from this viewpoint, since behavioral illnesses are much less expensive to treat than physical illnesses, and in many cases, are not covered by insurance at all.

Learn more

• Definitions of ME and CFS
• Forgotten Plague
• Osler's Web
• Thirty Years of Disdain

See also

• List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks
• XMRV

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

World Health Organization (WHO) - "A specialized agency of the United Nations that is concerned with public health. It was established on 7 April 1948, and is headquartered in Geneva, Switzerland. The WHO is a member of the United Nations Development Group. Its predecessor, the Health Organization, was an agency of the League of Nations." The International Statistical Classification of Diseases and Related Health Problems (ICD) is maintained by WHO.

See World Health Organization.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

See Centers for Disease Control and Prevention.

See chronic fatigue syndrome.

See myalgic encephalomyelitis.

See Canadian consensus criteria.

Canadian Consensus Criteria (CCC) - A set of diagnostic criteria used to diagnose ME/CFS, developed by a group of practicing ME/CFS clinicians in 2003. The CCC is often considered to be the most complex criteria, but possibly the most accurate, with the lowest number of patients meeting the criteria. Led to the development of the International Consensus Criteria (ICC) in 2011.

See ME/CFS.

Institute of Medicine report (IOM report) - A report that was commissioned by the U.S. government and was published by the Institute of Medicine on February 10, 2015. The report was titled "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness" and proposed the term Systemic Exertion Intolerance Disease (SEID). Among its key findings were that "This disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort." The report further stated "Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome."

systemic exertion intolerance disease (SEID) - A term for ME/CFS that aims to avoid the stigma associated with the term "chronic fatigue syndrome", while emphasizing the defining characteristic of post-exertional malaise (PEM). SEID was defined as part of the diagnostic criteria put together by the Institute of Medicine (IOM) report of 10 February 2015.

See systemic exertion intolerance disease.

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

See post-exertional malaise.

International Consensus Criteria (ICC) - A set of diagnostic criteria, based on the Canadian Consensus Criteria, that argued for the abandonment of the term "chronic fatigue syndrome" and encouraged the sole use of the term "myalgic encephalomyelitis".

See International Consensus Criteria.

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).