Myalgic Encephalomyelitis - ME
Chronic Fatigue Syndrome - CFS
This site was created in response to the continued marginalization of people suffering from Benign Myalgic Encephalomyelitis, also incorrectly referred to as Chronic Fatigue Syndrome, Chronic Fatigue Immune Dysfunction Syndrome, Myalgic Encephalopathy and many others. For those looking for Fibromyalgia try this link Fibro Down Under
"ME is not CFS", this is the current CDC position. The paragraph below is from the 'Overview of CFS', a part of the CME course offered on the CDC web site(http://www.cdc.gov/cfs/cme/wb1032/chapter1/overview.html).
"Various terms are incorrectly used interchangeably with CFS. CFS has an internationally accepted case definition that is used in research and clinical settings. The name chronic fatigue and immune dysfunction syndrome (CFIDS) was introduced soon after CFS was defined; there is no case definition for CFIDS, and the name implies an understanding about the pathophysiology of CFS that is not fully supported in the medical literature. The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS."
There is an ever-increasing body of evidence from international centres of excellence for a variety of signs and biomarkers for myalgic encephalomyelitis (ME). Not only neurological deficits, as demonstrated by nuclear medicine techniques such as SPECT, MRI and MRS scans (which demonstrate cerebral hypoperfusion, raised concentrations of ventricular lactate in cerebrospinal fluid, significant reductions in global gray matter volume)[de Lange FP et al 2004, de Lange FP et al 2005, Lange G et al 2005, Yoshiuchi K et al 2006], but also for endocrine dysfunction (disturbance of the HPA axis), immune dysfunction (evidence of an unusual and inappropriate immune response), and vascular disturbance (evidence of disrupted biology of blood vessel endothelium), together with evidence of mitochondrial abnormalities in muscle.
Now we await the rest of the world to follow this lead as easily as they did the initial 1988 defining of CFS. In the UK where the term ME was first referenced( see below), two broad definitions were introduced, CFS and Post-infectious fatigue syndrome (PIFS) in the "Oxford Criteria" but PIFS does not require neurologic signs only pre infection to differentiate from CFS while Myalgic Encephalomyelitis which does neurologic signs, seemingly can be either difficult to reason (an each way bet?). more on this down the page.
On basis of 'prolonged fatigue' Myalgic Encephalomyelitis shall be viewed as a major subset of the ubiquitous Chronic Fatigue Syndrome, the "G93.3 subset". By this I refer to post-infectious (includes post-viral) and ME, as this major subset; that is ME being a sequelae. Other subsets under CFS (by causation) could be environmental, immune reaction(Vacanations?), genetic predisposition etc. Then we could have subsets formed from (1)common symptoms grouping, (2)affected body systems, (3)grouped by common altered gene expresion and so forth
Should myalgic encephalomyelitis have been defined as the "chronic fatigue syndrome" or has it just been linked tenuously by FATIGUE, sorry, chronic fatigue; the primary symptom in the CFS diagnosis, which is of minor or no import when diagnosing ME. The 2006 definition and criteria of myalgic encephalomyelitis by Byron Marshall Hyde MD does not mention this phrase.
This "F" word is of serious concern to the industrial countries because eliminating this blight would increase productivity and thus profits. Go to work pop a pill and do twice the work for the same wages (less the price of the pill).
There are other terms that are used in conjunction with this collation of symptoms describing CFS ME, Post Polio Syndrome and the list goes on. All of these terms have validity in their origins but only Myalgic Encephalomyelitis and Post-viral Fatigue Syndrome are classified G93.3 by the World Health Organization, the chronic fatigue series are little more than pseudonym's are are recorded so, Neurology chapter G93.3. It should be noted that fatigue syndrome (not Chronic Fatigue Syndrome) is in category F48, Neurasthenia and note that post-viral fatigue syndrome is explicitly excluded from F48.0.
The point being that ME is a Neurological disorder and should be treated as such. The belittling generalization chronic fatigue syndrome arrived at by courtesy of the Centers for Disease Control (CDC), was primarily for the purpose of enabling further research; that was the 1988 story. Then 1994 saw this CFS definition expanded to include almost anything where fatigue was a symptom or factor. Myalgic Encephalomyelitis was now just one many diseases(illnesses) and conditions sub-categorised under CFS.
While the CDC uses 'Fukuda et al', the US ICD-9-CM classifies Myalgic Encephalomyelitis within
6: Diseases of the Nervous System and Sense Organs -
323 Encephalitis, Myelitis and Encephalomyelitis -
323.9 Benign Myalgic Encephalomyelitis.
Chronic Fatigue Syndrome is classified within
16: Symptoms, Signs and Ill-defined -
780.7 Malaise and Fatigue (excludes Neurasthenia) -
780.71 Chronic Fatigue Syndrome.
With this in mind how can the American medical community use 'CFS/ME' as a term with any validity.
The US ICD-10 CM draft was released in June 2003, now updated by the July 2007 release of ICD-10-CM and implementation is effective Oct. 1, 2011. The draft 2003 document listed CFS in two(2) codes; 1 - Postviral fatigue syndrome G93.3 and 2 - Chronic fatigue, unspecified R53.82; BUT this current 2007 document does not list CFS under G93.3, it is gone. Chronic Fatigue Syndrome can only be coded R53.82, that is the only entry in the US ICD-10 CM
: note that myalgic encephalopathy( new UK term) is not coded here or in the UK ICD-10
The old problem still arises in the UK where the reference is to 'ME/CFS'. Where ME, Myalgic Encephalomyelitis pre-dates CFS by more than forty years. The first reference to Encephalomyelitis was in 1956 by a former Chief Medical Officer (Sir Donald Acheson), then A.M. Ramsay and Ramsay again in 1986.
To facilitate highlighting ' the fatigue factor ' and to undermine the term Myalgic Encephalomyelitis which has aetiological implications, 21 invited clinical and scientific researchers met in Oxford ( a further 6 persons did not attend, ref: Oxford guidelines Authors). The resulting paper 'Guidelines for Research', more commonly known as 'the Oxford Criteria' introduced a new reference "Post-infectious Fatigue Syndrome" this one would assume equates to Post-viral Fatigue Syndrome but with a wider catchment. Thus PIFS would occupy the same ICD 10 position(G93.3) as Myalgic Encephalomyelitis, and thus further confusion, 'except may be in the deliberations of the signatories'. Was the intention to start this differentiation between CFS and ME?
Differentiation already exists, CFS and ME have differing case definitions, while the only definition for PIFS(has no ICD code available) would seem to be contained in the Oxford Criteria. Further differentiation and discrimination is required, such that sub-types are identified with appropriate distinct case definitions; until we start moving towards this position, research can tend to be cyclical. Jason et al.'s (2005) "Chronic Fatigue Syndrome: The Need for Subtypes" while acknowledging Myalgic Encephalomyelitis has a distinct case definition does not dwell on the CFS - ME differences, instead enpanding argument for subtypes to improve the sensitivity and specificity in future studies.
After years of abuse, humiliation, marginalization and tragedy, 2004 is witness to a grass roots movement away from the control of self interest collectives and to follow where the peer reviewed research is heading. The first item of business is the removal of the umbrella term Chronic Fatigue Syndrome as the clinical and diagnostic definition, the need is to define what a person is suffering from even if this does not provide a solution or fit pre-existing categories - come theories. It is impossible to treat a Neurological disorder with only the tools one would use for treating disorders classified as Neurasthenia. This is akin to trying to psychoanalyse the prions that cause bovine spongiform encephalopathy (BSE).
For 'health professionals' involved with the diagnosis, treatment and care of ME / CFS patients / clients this "Management Guidelines for General Practitioners"(2004) employs the 2003 Canadian Definition, Diagnostic and Treatment Protocols (Carruthers et al,). This defination was one of the first criteria developed for diagnostic rather than research purposes.
For those still wishing to reference or use the CDC's 1994 'Fukuda Criteria' here is an article by Anthony L. Komaroff, M.D. The Physical Basis of CFS. Dr. Komaroff is one of the authors of the first CDC '1988 criteria' (Holmes et al.).
Enough of my editorializing: at this point in time (jan 05),still a majority of pages on this site pertain to the UK where the ME action has been persued rigorously during 2004. As the name change debate continues in the USA I will try and present the Chronic Fatigue Syndrome / Myalgic Encephalomyelitis saga. As health permits, the problems as experienced in other countries will be added to ME International.
"Fair Use" notice, if you wish to copy, reproduce or otherwise use material contained at this site; PLEASE READ.
Fennell, Patricia; Jason, Leonard; Taylor, Renée R. (2003). Handbook of chronic fatigue syndrome. New York: Wiley. ISBN 0-471-41512-X.
2. Post-Exertional Malaise and/or Fatigue:
3. Sleep Dysfunction:
5. Neurological/Cognitive Manifestations:
6.a. Autonomic Manifestations:
6.b. Neuroendocrine Manifestations:
6.c. Immune Manifestations:
7. The illness persists for at least six months.
Considerable cultural variations occur in the presentation of this disorder, and two main types occur, with substantial overlap. In one type, the main feature is a complaint of increased fatigue after mental effort, often associated with some decrease in occupational performance or coping efficiency in daily tasks. The mental fatiguability is typically described as an unpleasant intrusion of distracting associations or recollections, difficulty in concentrating, and generally inefficient thinking. In the other type, the emphasis is on feelings of bodily or physical weakness and exhaustion after only minimal effort, accompanied by a feeling of muscular aches and pains and inability to relax. In both types a variety of other unpleasant physical feelings is common, such as dizziness, tension headaches, and feelings of general instability. Worry about decreasing mental and bodily well-being, irritability, anhedonia, and varying minor degrees of both depression and anxiety are all common. Sleep is often disturbed in its initial and middle phases but hypersomnia may also be prominent.WHO ICD 10