ME/CFS

The acronym ME/CFS is commonly used as an umbrella term to cover the various case definitions used to describe Myalgic Encephalomyelitis (ME) and/or Chronic Fatigue Syndrome (CFS) around the world. Case definitions vary widely, with some being so broad as to cover numerous unrelated illnesses. Even among the narrower case definitions, it is unclear if (ME) is equivalent to (CFS), a specific form of it, or something entirely different. In ME/CFS research, the terms are often used synonymously, though there is no clear evidence to support either equating them or separating them.

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 & Prevention (CDC) literature began using the name CFS.

ME & 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.

Number afflicted and lost wages
ME/CFS afflicts up to 2.5 million Americans (and an estimated 17 million worldwide) and in the USA there are lost wages of $17-24 billion a year. The US numbers came 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 on a clinical level 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