ME/CFS: Difference between revisions

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
(→‎History: Formatting (I hope I am done soon!))
Line 2: Line 2:


==History==
==History==
=== Myalgic encephalomyelitis ===
1934, The first recorded outbreak of Myalgic Encephalomyelitis was at [[Los Angeles atypical polio outbreak|Los Angeles County Hospital in 1934]].  
1934, The first recorded outbreak of Myalgic Encephalomyelitis was at [[Los Angeles atypical polio outbreak|Los Angeles County Hospital in 1934]].  


Line 8: Line 9:
1969, The [[wikipedia:World Health Organization|World Health Organization]] (WHO) recognized [[ME]] as a distinct disorder and classified it as a specific neurological disorder.  
1969, The [[wikipedia:World Health Organization|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.
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; the name change occurred when the [[Centers for Disease Control & Prevention]] (CDC) literature began using the name CFS.
1980's, The term [[CFS]] was first used in medical literature in the United States; 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, <ref>[http://blog.oup.com/2015/02/disease-name-chronic-fatigue-syndrome-me/ How disease names can stigmatize OUP Blog - By: Leonard Jason]</ref> "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.<ref>[https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/ Synonyms of Myalgic Encephalomyelitis - NORD - By: Lenny Jason]</ref>
1990's - 2000's, <ref>[http://blog.oup.com/2015/02/disease-name-chronic-fatigue-syndrome-me/ How disease names can stigmatize OUP Blog - By: Leonard Jason]</ref> "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.<ref>[https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/ Synonyms of Myalgic Encephalomyelitis - NORD - By: Lenny Jason]</ref>


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.  
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.<ref>[http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - A Clinical Case Definition and Guidelines for Medical Practitioners - An Overview of the Canadian Consensus Document]</ref>
2003, The [[Canadian Consensus Criteria]] (CCC) developed was the first time the ME/CFS name and acronym was used.<ref>[http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - A Clinical Case Definition and Guidelines for Medical Practitioners - An Overview of the Canadian Consensus Document]</ref>



Revision as of 02:24, March 26, 2017

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.[1] 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.

History[edit | edit source]

Myalgic encephalomyelitis[edit | edit source]

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[edit | edit source]

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; the name change occurred when the Centers for Disease Control & Prevention (CDC) literature began using the name CFS.

ME & CFS used interchangeably[edit | edit source]

1990's - 2000's, [2] "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.[3]

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[edit | edit source]

2003, The Canadian Consensus Criteria (CCC) developed was the first time the ME/CFS name and acronym was used.[4]

2006, Rich Carson, founder of ProHealth,[5] started a name change campaign.

2007, The term ME/CFS was proposed at the International IACFS/ME Research and Clinical Conference.

2008, Invest in ME called for unity in using the name.[6]

Why the acronym ME/CFS is used[edit | edit source]

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.)

Number afflicted and lost wages[edit | edit source]

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 a clinical level).[7][8]

Criteria comparrisons[edit | edit source]


Excerpt
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


This indicates there are fewer ME-ICC patients and the numbers of afflicted and financial impact from the IOM report are not correctly attributed to ME but instead to ME/CFS.[9]



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.


This shows that when Fukuda criteria, CCC and ME-ICC have severity/frequency thresholds added these patients will meet SEID criteria. This is advantageous on a clinical level as patients can be diagnosed by a Primary/GP/Family Doctor and then the patient can go through the more rigorous process of receiving a CFS, ME/CFS or ME diagnosis using Fukuda criteria, CCC and ME-ICC until a Biomarker is found.

Controversy[edit | edit source]

Dr. Nancy Klimas discusses the ME and CFS name controversy.[10] Dr. Klimas 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.[11]

Learn more[edit | edit source]

References[edit | edit source]