Myalgic Encephalomyelitis
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Agencies Discriminate Against Your Disease...

, trust – 1 keywords – Advocacy, Advice, NIH, CDC, Funding, Osler's Web
"Some websites discriminate against your browser."
—Lightweight Browser Midori, FAQ

For those who are newly sick I think it is really important that you are aware that government agencies discriminate against your disease as well as why and how this came to be.

One of the best sources of historical information on how this situation came to be—for example why we have gotten less a $5 million pittance for research under Bush, Clinton, Bush, Obama—is "Osler's Web" by Hillary Johnson which chronicles the early history of this disease, especially in the USA, and how "CFS" came to be...

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Aerobic Energy Production and Lactic Acid in M.E.--A Study

, trust – 1 keywords – Research, Case Study, Metabolism
The Aerobic Energy Production and the Lactic Acid Excretion are both Impeded in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Mark Vink
Family Physician/GPwSI, Soerabaja Research Center, The Netherlands

Background: In this study the muscle bioenergetic function in response to exercise in severe ME was explored to see if the underlying metabolic problem in ME, responsible for the severe difficulties with trivial exercise, and the severe loss of muscle power, could be discovered.

Note: please follow link to see more <_-

(edited: 10/15)

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Professor Jason on exclusive vs inclusive Gov processes

, trust – 1 keywords – Advocacy, History, 2000s,
This Leonard Jason interview will be invaluable if you want a good overview of the history of ME advocacy in the period ~2000-early 2010s.*

Also a lot on moral dilemmas that we all, to some degree, face. My own comment would be that the moral dilemmas may be real but it is an absolute shame that MANY are caused by artificial roadblocks the government has set up on the path to quality research, discovery, treatment, and social care. (when they should have been doing the exact opposite...though this ought to go without saying...)

Some notes:

CAA = CFIDS Association = Solve MECFS Initiative (current name)

Kim McCleary = The former director of the CAA.

Carol Head = Current Director of Solve MECFS Initiative.

Jennifer Brea = Harvard Grad student who made the upcoming film Unrest and founded MEAction with Beth Mazur.

Institute of Medicine = National Academy of Medicine (currently)= Was awarded a non-competitive grant by the NIH to redefine ME and produce a "state of the science" type report. Besides Professor Jason's criticisms a lot of the flaws in the process and outcome are covered in Jeannette Burmeister's blog

William Reeves (CDC), Stephen Straus inter alia = some of the federal officials Jason is likely (my interpretation) referring to in his comment on "extraordinary abuses of power" against patients. There are many more and I leave out all from the UK for sake of brevity.

*I think it's fair to say most reasonable people will agree at this point that much less was achieved than could have been.

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Common M.E. Advocacy Document Project

, trust – 1 keywords – Advocacy, Project, Team, Funding
Hey Everyone!

I've added a link to a Google Doc with a draft for a common platform that could be used for advocacy.

In order to get funding and research of high quality ( for which a strong definition is a necessary requirement ), I think it would be a tremendous advantage if we had a common document, or goals, we could present to the NIH, Congress etc. knowing it had the backing of 95% + of M.E. patients.

The basic idea behind the funding goals was to think big, think morally and think idealistically.

I'd like to invite all the members of this website to help with unfinished sections, or add new ones they feel are important, as they are able!

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Top Researcher Seeks Cure for son with ME

, trust – 1 keywords – news, advocacy
Excerpt from the article, well worth reading the whole thing if you're able:

"Davis aims to use Stanford’s technology — and eventually collaborate with others — to study ME/CFS in an unprecedented way. He has recruited three Nobel laureates and other noted scientists to the advisory board of the Open Medicine Foundation, which is raising money for the project. In July and August, it received $1 million in donations, mainly from two anonymous sources, enough to begin the first phase of the study. Much more will be needed to understand this complex illness and develop treatments for it."

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Millions Missing Protest

, trust – 1 keywords – Advocacy, Protest, MEAction
In two days, Wednesday May 25 we're on track for the largest Myalgic Encephalomyelitis protest in a very long while, probably ever.

Many thanks to those who inspired this project, who worked coordinating it centrally, and the many city organizers who worked hard to make so many mirroring events possible. If you're healthy and nearby please join us. Whatever your politics we're offering you an opportunity to be mad at your government for an entirely legitimate reason--

-- The chronic denial of research, and medical care to people with ME which has resulted in many thousands of needless deaths and people lost from society.

Locations include:
* Washington DC,
* San Francisco, California.
* Seattle, Washington.
* Dallas, Texas.
* Raleigh, North Carolina.
* Philadelphia, Pennsylvania.
* Boston, Massachusetts.
* Atlanta, Georgia.

In the UK, Ireland, and Canada:
* London, UK.
* Belfast, Ireland.
* Canada Virtual Protest.

* Melbourne, Australia.

In a cruel irony of fate, people with ME have been dying going on 4 decades now, or living in virtual isolation because this disease is as disabling as congestive heart failure and the patients lack the functional ability to combat the stereotypes the USA and UK government have spread whether due to small-mindedness, misogyny, or an immoral effort to save money (or all of the above).

Some of the patients from the nineties like Alison Hunter, Tom Hennessy, Nancy Kaiser, Raymond Colliton, Sopia Mirza, Naomi Weisstein, are no longer with us while many more are like, Laura Hillenbrand, confined to their beds.

We need a huge effort of research, and a dedicated research institute, and many dedicated clinical institutes. We need more support for the severely ill who cannot fend for the themselves at all or even make a meal. We need a sincere and prodigious effort.

Counter to Alexander Hamilton's belief that the public is a beast the public almost always more compassionate than the rulers. And people know the government lies to us and the media is at best extremely unreliable. Institutions often become mired in counterproductive, amoral patterns of thought and action and the only way we have been able to shake them out of it has often been public exposure. Because the public is more compassionate...

We can hope the public won't let institutions in this country "play on" as usual and will demand research, and accountability for Myalgic Encephalomyelitis.

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Simple Steps for the detection of bad science in ME Research

, trust – 1 keywords – definition, advocacy, cdc, ccc, icc, Oxford

It's come to my attention that bad science and good science in the field of Myalgic Encephalomyelitis are often sloshed together. In a disease for which there is such low funding, and therefore fewer studies, this is especially dangerous.

So, I hope to do my part in helping with this simple guide.

It starts out with a few premises I think any rational, scientifically-minded, person would agree with:

1.) Any definition of a disease or illness should include the central defining feature of that condition.

2.) People with idiopathic fatigue vastly outnumber nearly every disease category (including Myalgic Encephalomyelitis).

3.) In the absence of other clues clinicians who studied outbreaks firsthand should be given the assumption that they know how to diagnose the illness in question, even if their study cites a definition that fails the first premise.

Now the fun stuff–How do we determine if a study in Myalgic Encephalomyelitis is "bad science"? And what cases fall in the gray area wherein they may constitute evidence but confirmatory work is required?


The first and easiest step is to consider which studies which used definitions failing premise 1.

The Oxford Definition (1992) requires only "chronic fatigue lasting at least 6 months" and the Reeves Definition (otherwise called Updated CDC Definition, or CDC 2005 Definition or CDC Empirical Definition or the Definition with too many names) requires that patients possess at least 4 symptoms from the more-well known 1994 Fukuda Definition but with no hard requirement for reduced functioning and significant overlap with the significantly, more common, major depression.

The Oxford Definition and Reeves Definition fail premise 1 (they do not include the central feature of 24-72 hour delayed post-exertional collapse*) and premise 2 by being too porous to exclude idiopathic fatigue and severe fatigue from other causes.

So, for an example of this logic: the widely disseminated PACE trial and its more recent descendants turn up on the heap of bad science.


The widely used Fukuda 1994 definition fails premise one as well. While it requires at least four signs and symptoms associated with Myalgic Encephalomyelitis and "chronic fatigue" it doesn't require that the core symptom of the disease: "delayed onset Post-Exertional Collapse" is met.

Also, one must wonder about the people who receive this diagnosis before getting treatment for their true problem: for example, someone suffering undiagnosed chronic migraines could likely get a diagnosis of "CFS" according to the Fukuda Definition.

This leads to a dilemma.

In the United States the Fukuda Definition was used nearly exclusively in the years 94-late 00s. How is one to decide then if a study is good or bad? Should all research from this period be trashed?

In my opinion, No.

This leads us to premise 3. Is there a good reason to assume the authors knew what they were talking about? Doctors and Researchers who were present at the earliest outbreaks such as Royal Free (1955), Incline Village (1980s) and Lyndonville (mid 1980s) can be assumed to know how to diagnose a Myalgic Encephalomyelitis patient. Such people include Ramsay, Cheney, Peterson, Bell, among others.

...Isn't this a bit circular you ask? Maybe they were just always bad diagnosticians and that's why "outbreaks" occurred? The best answer is to refer to the history of these outbreaks: there is ample evidence each occurred, and additionally the patient and journalistic descriptions are congruent with the descriptions of the clinicians involved in studying them.

So, it seems reasonable enough to me, that these clinicians should be trusted to diagnose Myalgic Encephalomyelitis even if their studies methodologies cite a weak definition (such as Fukuda 1994 in the materials and methods).

A second tactic, is to see, if possible, if the article you are investigating listed how many patients had post-exertional collapse (malaise) as a symptom? If the percentage is high, then it likely the study has scientific value even if the Fukuda Definition was used.

Some examples of studies that fit the above description, and are therefore probably trustworthy: The blood volume studies by Bell and Streeten, the NK cell studies by Klimas, most/all of the studies by the charity ME research UK** in this time period.


Perhaps you refer to the Canadian Consensus Definition or the International Consensus Definition? I've yet to see a strong argument as to why these two are "bad." If we confine ourselves to the earlier three premises we should accept any study using the ICC or CCC as good science: at least insofar as patient selection is concerned.

A recent definition by the IOM, for Systemic Exertional Intolerance Disorder includes "Post-Exertional Malaise" but is otherwise considered by some researchers and many patients to be bad. Why? An argument in a recent study is that these criteria lack exclusions for psychiatric disorder and don't require central, however non-unique, symptoms to ME such as sleep disorder, cognitive disorder etc.


Though advances have been made in measuring it;(1,2) reporting delayed Post Exertional Collapse is currently subjective (at least in the definitions considered) and it could be reported in other diseases and conditions. Therefore many argue it is necessary but not sufficient to define Myalgic Encephalomyelitis. The argument is widely observed, albeit non-unique, signs and symptoms are needed: such as Cognitive Impairment(s), Unrestful Sleep, and Widespread Pain.

I tend to concur. Thanks for reading.

In Summary:

Reeves Definiton (2005): Bad!
Oxford Definition (1992): Bad!!!
Fukuda Definition (1994): Untrustworthy, evaluate studies using it with care.
CCC: Passes.
ICC: Passes.

* A marked, often several magnitudes, generalized worsening of symptoms including: pain, neurological, cognitive, sleep difficulty, increased difficulty maintaining upright posture, generalized muscle aches from the pre-exertion state of function.

** This refers to the Research Charity: ME Research UK, previously called MERGE. Led by Drs. Vance Spence, Neil Abbot (recently retired) and Sue Waddle.

(1) Snell CR, Stevens SR, Davenport TE, Van Ness JM. Discriminative validity of
metabolic and workload measurements for identifying people with chronic fatigue
syndrome. Phys Ther. 2013 Nov;93(11):1484-92. doi: 10.2522/ptj.20110368. PubMed PMID: 23813081.

(2) Keller BA, Pryor JL, Giloteaux L. Inability of myalgic
encephalomyelitis/chronic fatigue syndrome patients to reproduce VO₂peak indicates functional impairment. J Transl Med. 2014 Apr 23;12:104. doi: 10.1186/1479-5876-12-104. PubMed PMID: 24755065; PubMed Central PMCID:

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What is Myalgic Encephalomyelitis: An Introduction

, trust – 1 keywords – intro, introduction, summary, history, what, opinion

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 [1].

The name “Myalgic Encephalomyelitis” comes from a 1955 outbreak of the disease at the Royal Free Hospital in London [2] 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 [3]. 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 [9]. 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 [10] 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 [13] and secondly in 2011 with the International Consensus Definition [14]. (VII)

(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:
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).
“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).
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.

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