May 22, 2009
Permission to repost
To the CFSAC:
Epidemic Myalgic Encephalomyelitis: A Demand for Urgent Action and Accountability
The CDC has systematically failed its mission to protect the health of the global community with regard to the uncontrolled spread of the pandemic neurological and multiple systemic disease Myalgic Encephalomyelitis,to prevent the chronic lifelong disability, suffering and needless deaths ithas wreaked on the lives of millions of people around the world since the CDC became negatively involved with this infectious disease 25 years ago while in the midst of the AIDS pandemic. The CDC ignored the growing epidemics, theCheney/Peterson biomarkers and historical evidence by constructing CFS and pretending it was a new condition.
It has failed to educate the public about the 75 year epidemic history of M.E., to educate the medical profession with appropriate guidelines to care for the patients, to fund research and provide treatmentsfor the disease, and critically to ban blood donations and stop the spread ofthis disease. It has failed its mission and goals, denying the epidemics, focusing wrongly on fatigue and psychosocial factors, pursuing meaningless research studies, and subjecting sufferers to uninformed medical neglect andhuman rights abuses. Advising doctors not to do the very tests that wouldconfirm the disease? That is CDC policy.
It began with a botched investigation of a major outbreakof M.E. in a tourist village at Lake Tahoe, where the CDC ignored thebiomarkers found by Drs Cheney and Peterson which validated the disease, and continuing to the present day with its 25-year marketing exercise in rebranding this serious disease similar to M.S. and Post Polio Syndrome as CFS, renaming and redefining it as a vague fatigue state via the unscientific Fukuda and Holmes definitions and further reducing it to a “stress-related disorder” usingthe 2005 Reeves “empirical” definition – a subjective questionnaire about“unwellness”. CFS is known as the wastebasket diagnosis - for it describes all states of “chronic fatigue” and has been the subject of intense psychiatric speculation and abuse. Severely affected patients are not believed, and many are so desperate they take their own lives. Sick children have been removedfrom their families, what kind of society allows this?
The first recorded epidemic was initially described bythe U.S. Surgeon General A.G. Gilliam as Atypical Poliomyelitis in 1934. After an epidemic affecting the doctors and nurses at the Royal Free Hospital in1955, M.E. was named by Sir Donald Acheson in 1956 and described by A.L. Wallisin 1959. The distinguished neurologist Lord Brainincluded it in the standard textbook of Neurology in 1962. Drs Melvin Ramsay and John Richardson had Benign Myalgic Encephalomyelitis recognised byWHO in ICD-8 at Code 323 under Diseases of the Central Nervous System in the1969 edition of the WHO-ICD.
Why was M.E. moved to Code G93.3 Other Disorders of theBrain with CFS listed as a synonymous term – can the CDC explain why it is nowin this odd category with various unrelated entries? The CFS definition does not describe the neurological disease M.E. and severely undermines its biomedical credibility. The US – in ignorance of the official name and neurological classification of the disease? – then referred to the continuing epidemics as Epidemic Neuromyasthenia until the fatefuloutbreaks in the 1980s.
In 1978 the Royal Society ofMedicine held a symposium on ME at which ME was accepted as a distinct entity and The Ramsay case description was published in 1981. In response to massive outbreaks in the 1980s, the CDC rebranded the disease as CFS, placed it in the National Center for Zoonotic, Vector-Borne, and Enteric Diseases at the Chronic Viral Diseases Branch, designated it for funding status as "Aserious legitimate diagnosis CDC PRIORITY 1 disease of public healthimportance", and then failed to fund it adequately, promoted it as arecoverable fatigue state, and acted to eradicate all knowledge of the M.E.Researchers could not get M.E. research published as they had to abide by the CDC’s name and definition.
The CDC did not fulfil itsobligation to protect the public, it proceeded on a program of denial, failingto alert the public or the responsible health agencies of this serious publichealth threat, failing to ban blood donations and contain the disease, and indulging in a funding scandal in which William Reeves was involved. The NIH has also failed its mission to research the disease, hiding it under CFS at the Office of Research into Women’s Health (ORWH) with a paltry budget, rather than placing M.E. at the National Institute of Neurological Disorders and Stroke(NINDS) alongside similar diseases as M.S. and Post Polio Syndrome, where it should have a budget on a scale commensurate with the fact that more people are affected by M.E. than M.S. and are just as severely disabled.
The CDC website on CFS continues to ignore the wealth of accumulating evidence: “As yet, there are no diagnostic tests or laboratory markers for CFS, and its pathophysiology remains unknown. … Various terms are often used interchangeably with CFS. CFS is the preferred term because it has an internationally accepted case definition that is used in research and clinical settings ... The name myalgicencephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscularsigns and has a case definition distinct from that of CFS.” There is no definition of M.E. that they recognise, not the Ramsay definition or the 2003 Canadian definition, despite the documented M.E.epidemics, testable abnormalities, and compelling evidence of enteroviralcontagion and severe neurological and systemic dysfunction.
The CFSAC needs to act firmly, stop acting like a bumbling committee and listen to the expert patient testimony that has been telling them for years of the urgent need to recognise Myalgic Encephalomyelitis and for accountable leadership. The CDC is not leading theworld as it claims but has again been caught out in funding abuses; and independent research has had to step in - it is The Chia EnterovirusFoundation, The Whittemore Peterson Institute, ME ResearchUK and The (ME) CFS Research Foundation that are unravelling this complex disease. The NIH mustalso act responsibly and place M.E. at NINDS where researchers can look at the similar etiologies and pathological processes of diseases like M.S. and PostPolio Syndrome.
The unstated objective of the 5-year “CFS” strategic research plan is to continue to study CFS as a stress-related disorder by following the false UK psychiatric model, which produced the dangerously flawed NICE Guidelines for CFS/ME - for vaguely defined “chronic fatigue” patients -and the funding of chronic fatigue clinics which are detrimental to M.E.patients and deprive them of the medical care that they would receive if M.E.was a recognised neurological disease. The vague goals of the Draft Strategic Research Plan General Outline use the keywords favoured by the psychiatric model – psychosocial, psychoneuroendocrinologic, risk factors, management,intervention, and absurdly to move CFS - the wastebasket diagnosis - into the mainstream of public health concerns. That is the CDC’s policy – to focus on ameaningless wastebasket diagnosis instead of the urgent and desperate need for Myalgic Encephalomyelitis research?
A decision 25 years ago to alert the public to the M.E.pandemic as they have done with the recent H1N1 flu outbreak would have been the responsible action of the CDC in this regard, and recognition of the pathological biomarkers discovered in the 1980s should have validated theserious nature of the disease as technological advances did for M.S. in the1950s. Knowledge of the previous epidemics would have apprised all medical personnel of the parallels with poliomyelitis and enteroviral etiology, enabledearly detection in the acute stage of the disease, created demand for a massiveinjection of funding for research into etiology, pathophysiology and treatments, and the prevention of long term disability. Medical treatments would be approved now to stop the suffering and needless deaths that have been ignored or cruelly stigmatized by warped concepts of fatigue and somatisation.
Given the failure of the CDC to alert the public and contain this pandemic, a Congressional Inquiry into this appalling state of affairs is long overdue and desperately needed - after 25 years the pandemic is still hidden, the numbers of patients neglected by the medical profession aregrowing and the hidden death rate is steadily climbing. The CDC has had everyopportunity to correct this over the last 25 years, and the CFSAC must also correct itself and provide strong leadership now. It is inevitable that private research organizations will unravel the truth about the disease and patients suffering for decades or diagnosed with M.E. - before the CDC intervened with its CFS wastebasket diagnosis - will not give up the quest for the truth aboutMyalgic Encephalomyelitis.
The CFSAC must respectfully consider how it is contributing to the human rights abuse caused by the CFS construct, and demonstrate that it is forcefully acting in the best interests of these severely ill and neglected patients by becoming the Myalgic Encephalomyelitis Advisory Committee, strongly demanding the reinstatement of MyalgicEncephalomyelitis and the adaptation of a research version of the Canadian Consensus Guidelines, the only medically relevant guidelines with *diagnostic tests* and treatment suggestions
CFS patient organisations also need to acknowledge their part in promoting the CDC’s CFS construct and stop the name game of CFS, CFIDS,ME/CFS, CFS/ME, ME/CFS/PVFS and Myalgic Encephalopathy, all of which feed intothe uncertainty and disbelief that discourage medical and public understanding of the disease. Please stop supporting the misinformation, publicise all the historical and current medical facts and persistently demand that Myalgic Encephalomyelitis is urgently recognised and on the public agenda.
If anyone wants to quibble about whether the name is technically correct then carefully consider the extensive history of M.E. and how the CFS construct has delayed valuable research and progress, and prolonged the suffering of M.E. patients. Only when thorough research has been conductedon strictly defined and also severely affected M.E. patients can we question whether the name – classified by WHO for 40 years and known around the world for over 50 years – is still medically appropriate, or not.
1) Enteroviral Myalgic Encephalomyelitis – EvME[ME/CFS]. A treatise on EvME by Dr Irving Spurr http://www.meresearch.org.uk/information/keypubs/EvME.pdf
2) Myalgic Encephalomyelitis (Chronic FatigueSyndrome) – Research References Update http://www.meactionuk.org.uk/Research_References_Update_Dec_08.htm
3) Reference Index Of Papers Published OnEpidemics of ME 1934-80 (collected by Dr J. Gordon Parish) http://www.meresearch.org.uk/information/publications/ResearchPublications1934-1980.pdf
4) The Late Effects Of ME - Can they be distinguished from the Post-PolioSyndrome? Dr. E.G. Dowsett MB, ChB Dip Bact.Honourary Consultant Microbiologist, Basildon and Thurrock Hospitals NHS Trust http://www.mefmaction.net/Patients/Articles/Diagnosis/EffectsofMEED/tabid/225/Default.aspx
5) What is ME? What is CFS? Information For Clinicians And Lawyers –Prof Malcolm Hooper et al History andclassification of ME, How “CFS” displaced ME in the UK http://www.investinme.org/Article-020%20What%20is%20ME%20What%20is%20CFS.htm
6) MyalgicEncephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition andGuidelines for Medical Practitioners An Overview of the Canadian Consensus Document -Carruthers, van de Sande et al http://www.mefmaction.net/Portals/0/docs//ME-Overview.pdf
7) The Clinical and Scientific Basis of MyalgicEncephalomyelitis/Chronic Fatigue Syndrome ByronHyde, Jay Goldstein, Paul Levine – Published by The Nightingale ResearchFoundation http://www.nightingale.ca/
8) Osler’sWeb: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic -- HillaryJohnson http://oslersweb.com/index.htm
9) The Committee for Justice andRecognition of Myalgic Encephalomyelitis The History,Science and Politics Affecting Patients Disabled by M.E. around The Globe http://www.geocities.com/tcjrme/