Leaving its victims immobilized in dark rooms, often unable to care for themselves or perform simple tasks such as meal preparation or walking out of a room, (I) Myalgic Encephalomyelitis (ME) may be the world’s most common “unknown disease.”
In the United States alone, roughly between several hundred thousand and one million people are estimated to be affected .
The name “Myalgic Encephalomyelitis” comes from a 1955 outbreak of the disease at the Royal Free Hospital in London  described by A. Melvin Ramsay and others. For the chronic phase of the disease, (II) Ramsay described a triad of distinguishing hallmarks: muscle fatigability after trivial exertion, circulatory impairment, and cerebral dysfunction . The name was proposed by Sir Donald Acheson, later the UK’s Chief Medical Officer [4-6].
In the first half of the twentieth century, Myalgic Encephalomyelitis outbreaks appeared to be associated with polio outbreaks, but with the eradication of polio the meaning of this connection has not been given attention [6-8].
In the 1980’s an outbreak occurred at the resort town of Incline Village, Nevada. Although eventually the CDC was convinced to investigate, instead of recognition of this outbreak as Myalgic Encephalomyelitis, the ultimate result was the creation of a new syndrome construct, "Chronic Fatigue Syndrome,” with a new definition: the Holmes Definition . Mistakenly, the new definition privileged rarely seen symptoms and made essential symptoms such as intolerance to sensory or cognitive stimulation and the hallmark 24-48 hour delayed post-exertional worsening of all symptoms optional.
By the end of the 1980's, there was a conceptual divergence between the “classic ME” definitional frameworks and the “Holmes CFS” definition. Unfortunately, the current scientific literature on pubmed shows that many investigators chose to use these definitions and terms interchangeably.
The CDC’s subsequent 1994 redefinition of the "CFS" symptom construct  has contributed to widening confusion about the relationship between the collection of sufferers who fit the CDC definition of Chronic Fatigue Syndrome and sufferers of Myalgic Encephalomyelitis. The 1994 redefinition—immediately adopted by most of the research community—broadened the earlier definition without fixing its fundamental flaws. Two of its most egregious errors for describing ME are the lack of the requirement of integral signs and symptoms to obtain a diagnosis–such as delayed post-exertional malaise–while at the same time the imposition of a superfluous 6-month waiting period as a requirement for diagnosis. In most any chronic disease, much of the consequential and interesting pathobiology–as well as the highest response to treatment–will occur in the first few months after development, yet both the 1994 and 1988 definitions forbid study of this crucial period.
The broadness of the 1994 definition has also allowed some health bureaucrats and academics (III) to argue that the illness is a heterogeneous continuum of “fatiguing illness.” This problem was exacerbated by repeated statements by members of the CDC and the then-lead NIH researcher Stephen Straus that "the illness" was psychosomatic [11,12] (meaning Chronic Fatigue Syndrome and Myalgic Encephalomyelitis inclusively), qtd:
“I predict that fatigue itself will remain the subject of considerable interest, but the notion of a discrete form of fatiguing illness will evaporate. We would, then, be left with Chronic Fatigue that can be distinguished as Idiopathic or Secondary to an identifiable medical or psychiatric disorder. I consider this a desirable outcome.”
Advocates and researchers have long argued that the broadness of the 1994 CFS definition creates an artificial heterogeneity where non-related disorders (e.g., Multiple Sclerosis, Chronic Migraines, Primary Sleep disorder, depression, Lyme disease and a host of other diseases) may be diagnosed as CFS, leading to treatment failures and treatment neglect in often treatable diseases. In research circles, this problem of defining the disease is often likened to parable of the blind men examining the elephant. However, it is more accurate to say that the definition opened the elephant pen to giraffes and rhinoceroses too. (IV)
Another complicating factor is that many clinicians in the United States are uncomfortable diagnosing Myalgic Encephalomyelitis, and so diagnose, if at all, Chronic Fatigue Syndrome when presented with a patient with ME. (V) This undesirable situation leaves ME patients in a no-man's land between medical specialties, and without the tools to gain vital support from friends, family and co-workers. (VI)
Further gross misunderstanding follows from the CDC’s and NIH’s erroneous representation of "fatigue" as a characteristic symptom; fatigue is a physiological state that all human beings experience.
Valiant attempts have been made to improve the definitions so that a single disease population is under study—for instance, in 2003 with the Canadian Consensus Definition  and secondly in 2011 with the International Consensus Definition . (VII)
MORE DETAILS WITH OPINION:
(I) Two of the most conspicuous symptoms of Myalgic Encephalomyelitis are an inability to handle sensory, mental or physical stimulation, and a 24-48 hr. delayed relapse upon trivial exertion.
(II) It is also worth quoting Ramsay’s description of the acute phase of the disease:
“The onset of the disease is similar to those described in the various recorded outbreaks. Thus it may be sudden and without apparent cause, as in cases where the first intimation of illness is an alarming attack of acute vertigo, but usually there is a history of infection of the upper respiratory tract or, occasionally, the gastrointestinal tract with nausea and/or vomiting.
Instead of an uneventful recovery the patient is dogged by:
Persistent and profound fatigue accompanied by a medley of symptoms such as
Muscle pain, cramps, or twitchings
Muscle tenderness and weakness
Paraesthesiae [numbness or tingling in the extremeties]
Frequency of micturition [urination]
Blurred vision and/or diplopia [double vision]
Hyperacusis [sensitivity to noise sometimes alternating with deafness or normal hearing]
Tinnitus [constant sound in the ears], and a
General sense of feeling awful.
Some patients report the occurrence of fainting attacks relieved by a small meal or just eating a biscuit; these attacks were the result of hypoglycaemia
All cases run a low-grade pyrexia (fever), seldom exceeding 100°F (c. 38°C) and usually subsiding within a week.
A very thorough examination of the central nervous system should be made and this should be accompanied by a careful estimation of muscle power, especially in the limbs and neck. A search for enlarged lymph nodes should never be omitted. If muscle power is found to be satisfactory, a re-examination should be made after exercise; a walk of half a mile is sufficient, as very few ME cases can make more.”
(III) I note in passing that many of these people who got it wrong, barring complete incompetence, should have known better and most were in fact presented contrary evidence.
(IV) In short, the primary flaw of the 1988 definition for Chronic Fatigue Syndrome was its weak correspondence to the disease Myalgic Encephalomyelitis.
However, the primary flaw of all subsequent CFS definitions (CDC 1994, Oxford 1991, Reeves 2005) is that they include many unrelated medical conditions, and therefore do not resolve to a disease or or group of related diseases. Thus, the “heterogeneity” mentioned in ME is often not true heterogeneity but artifactual to the use of these CFS definitions in research.
(V) When physicians who have never learned about the disease Myalgic Encephalomyelitis in medical school search pubmed on it, what they will find is a considerable amount of flawed science, most of which claims it is a “heterogeneous disorder.”
Unless the doctor is willing to make an extensive search of the literature on ME, he or she can easily fall prey to this meme. This widespread misapprehension is one of the reasons for the near-total invalidation of Myalgic Encephalomyelitis in the medical community.
This common scenario does not excuse the institutionalized denialism surrounding this disease, but it does explain how a situation has been created where “old-boy” researchers producing misleading results, based on the use of poor definitions, continue to dominate the field because most everyone else has been convinced that the situation is not a serious one. The institutionalized denialism of Myalgic Encephalomyelitis represents one of the great moral lapses in 20th century medicine.
(VI) Due to the lack of social and medical understanding, many people with Myalgic Encephalomyelitis will additionally suffer from social isolation and medical neglect.
(VII) A definition popular with patients, but as yet unpublished in a medical journal, is Dr. Byron Hyde’s 2006 Definition. This definition includes the core symptoms mentioned by Ramsay and in the ICC and CCC definitions but also includes confirmatory tests such as:
Brain Hypoperfusion, by SPECT Scan.
Low blood volume, by 51Cr-labeled red blood cells.
Decreased or absent stage 3 and stage 4 sleep.
Low NK cell function.
Abnormal performance on the two-day cardiopulmonary exercise test (CPET).
1.) Nacul LC, Lacerda EM, Pheby D, Campion P, Molokhia M, Fayyaz S, Leite JC, Poland F, Howe A, Drachler ML. Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care. BMC Med. 2011 Jul 28;9:91. doi: 10.1186/1741-7015-9-91. PubMed PMID: 21794183; PubMed Central PMCID: PMC3170215.
2.) Ramsay AM. “Epidemic neuromyasthenia” 1955-1978. Postgraduate Medical Journal. 1978;54(637):718-721.
3.) Ramsay, A. Melvin. Myalgic encephalomyelitis and postviral fatigue states: The saga of Royal Free disease. Gower Medical Publishing. for the Mya; 1988. 2nd Edition.
4.) Editorial. A New Clinical Entity? The Lancet , Volume 267 , Issue 6926 , 789 - 790. DOI: https://doi.org/10.1016/S0140-6736(56)91252-1
5.) Acheson, ED. OUTBREAK AT THE ROYAL FREE. 20 August 1955. 1955. The Lancet. 266(6886):394-395.
6.) Acheson ED. The clinical syndrome variously called benign myalgic
encephalomyelitis, Iceland disease and epidemic neuromyasthenia. Am J Med. 1959 Apr; 26(4):569-95. PubMed PMID: 13637100.
7.) “Cluster Outbreaks.” Paradigm Change. Paradigm Change. Web. 23 November 2017. URL:
8.) “List of myalgic encephalomyelitis and chronic fatigue syndrome outbreaks”. Multiple Authors. Me-Pedia. Web. 23 November 2017. URL:
9.) Holmes GP, Kaplan JE, Gantz NM, Komaroff AL, Schonberger LB, Straus SE, Jones JF, Dubois RE, Cunningham-Rundles C, Pahwa S, et al. Chronic fatigue syndrome: a working case definition. Ann Intern Med. 1988 Mar;108(3):387-9. PubMed PMID: 2829679.
10.) Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome: a comprehensive approach to its definition and study.International Chronic Fatigue Syndrome Study Group. Ann Intern Med. 1994 Dec 15;121(12):953-9. PubMed PMID: 7978722.
11.) CFS and the CDC's Failure to Respond: Primetime Live (1996). https://youtu.be/AW0x9_Q8qbo
“This disorder is so subjective patients will commonly feel better no matter what you give them.”
12.) “CDC AND NIH Officials Discussed "Desirable Outcome" of Seeing A Distinct Illness "Evaporate”.” Craig Maupin. March 2014. Web. 23 November 2017. URL:
13.) Carruthers Bruce M., Anil Kumar Jain, Marjorie I. van de Sande et al. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Clinical Working Case Definition, Diagnostic and Treatment Protocols. Journal of Chronic Fatigue Syndrome. 2003. Vol. 11(1). http://dx.doi.org/10.1300/J092v11n01_02
Carruthers Bruce M., van de Sande MI, De Meirleir KL, Klimas NG, Broderick G,
14.) Mitchell T, Staines D, et al. Myalgic encephalomyelitis: International Consensus Criteria. J Intern Med. 2011 Oct;270(4):327-38. doi: 10.1111/j.1365-2796.2011.02428.x. Review. Erratum in: J Intern Med. 2017 Oct;282(4):353. PubMed PMID:
21777306; PubMed Central PMCID: PMC3427890
RECOMMENDED BOOKS (list is incomplete, more in the comments):
Osler’s Web, Hillary Johnson. If you have to read only one book. Despite its iconic status, it is not a difficult read.
Caring for the ME Patient, Jodi Bassett.
The Clinical and Scientific Basis of Myalgic Encephalomyelitis--Chronic Fatigue Syndrome, Byron Hyde and Jay Goldstein. July, 1992. Also on Amazon.
Chronic Fatigue Syndrome: A Biological Approach, Patrick Englebienne and Kenny De Meirleir.
Thirty Years of Disdain — How HHS and A Group of Psychiatrists Buried Myalgic Encephalomyelitis, Mary Dimmock.
The Doctor's Guide To Chronic Fatigue Syndrome: Understanding, Treating, And Living With CFIDS, David S. Bell.