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Epidemic Myalgic Encephalomyelitis: A Demand for Urgent Action and Accountability‏

May 22, 2009 - 20 comments
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politics and CFS

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Epidemic Myalgic Encephalomyel

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CFSAC



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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.

John Anderson  

References:

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/

Comments
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Avatar universal
by VaBreeze, May 22, 2009
What an impressive outline of facts.  It is appropriate to be concerned as to why the truth of this epidemic was not revealed and why it continues to be supressed.  

Avatar universal
by PlateletGal, May 22, 2009
"It is appropriate to be concerned as to why the truth of this epidemic was not revealed and why it continues to be supressed."

Precisely. You know I'm really beginning to believe that the CDC deliberately tries to keep the public confused. First, it was the scandal with this disease (not wanting to investigate it and then labeling it, although they didn't believe it was real). Next, it was the huge scandal with the funding for CFS research. And then they admit (but who read this) that CFS can be disabling as MS, stage 3 AIDS, renal failure and COPD. Now, they are trying to once again confuse everyone and blame the victims by suggestioning that this disease is stress related. Also, they want to work on "prevention" now.  Let's see if this makes sense.... they want to work on prevention, but yet they still haven't figured out (or have they?) what causes this illness. This is what the government did with Gulf War Syndrome.. keep the public confused, so they won't have all of the facts and still question whether or not the illness is real. The truth will come out eventually.... I'm doing my part and so is John Anderson, the person who wrote this very well articulated letter

Avatar universal
by VaBreeze, May 22, 2009
Not only did they do this with Gulf War, but it seems to be a habit.  This is typically the method...deny, deny, deny...only to accept it decades later.  Same thing they did with Morgellon's (telling people who had it that it was a form of parasitic hysteria)...same thing they are doing with Fibromyalgia.  Again, I have to ask, how can there be 'preventative measures' taken on something they claim to not know the cause of?  How do you prevent something when you have no idea how it happens?  Or do they?  I'm doing my part too.  Hopefully, because of those who speak out, our children/grandchildren will have a chance at a normal life.

Avatar universal
by PlateletGal, May 23, 2009
"I'm doing my part too."

And I think it is awesome ! We need more people to read this, comment, and let the CDC know that we know what is happening and we don't support it and our tax dollars being wasted once again !

Thank you !


Avatar universal
by PlateletGal, May 23, 2009

CFSAC Agenda - May 27-28, 2009       (I HAD TO LAUGH WHEN I READ "AGENDA"  ---- PlateletGal ----  ROTF !!!!! )
U.S. Department of Health and Human Services
CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE

http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac090527_agenda.html

Avatar universal
by cindy903, May 24, 2009
Wonder what ever happened to the doctors and nurses at that hospital?

Avatar universal
by PlateletGal, May 24, 2009
cindy903,

Good question and one that I do not have an answer to. I'm sure there must be at least a couple, if not a few, of those people who are still alive. I do know that in the CFS documentary, "I Remember Me", they interview a group of women who live in Florida. I think it was in the 60s when these women were stricken with CFS like symptoms and hospitalized. The CDC also investigated this cluster and never associated this cluster with the incidents in Lake Tahoe or Lyndonville, NY. (scary, isn't it?)

Anyhow, for those of you who would like to know what the CDC is doing and possibly speak out against it, here is a link to a petition. There are already over 1,000 signatures and people are furious that the CDC, thanks to Dr. William Reeves, has changed their definition for CFS that they had been using since 1994 (the Fukuda definition).  

http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/signatures-21.html



Avatar universal
by PlateletGal, May 26, 2009

We need more signatures. Please sign unless you believe that these outbreaks of CFS only targeted the stressed out individuals ! ; ^ )

http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/signatures-21.html

329994 tn?1301666848
by lvfrogs, May 29, 2009
ok, I went to the link above, but can't find a way to sign it? any help, PlateletGal? thanks!

Avatar universal
by PlateletGal, May 29, 2009
Hi ivfrogs,

Click on the link again and then at the top of the petition (in gray... below the green), it says "petition text". Click on that and it will take you to the beginning of the petition and where you can sign it.

Thanks !!!

Avatar universal
by PlateletGal, Jun 14, 2009

The joke of the day:

BACKGROUND: Chronic fatigue syndrome is a highly debated condition. Little is known about causes and treatment. Patients" experience is important in this context.

http://www.ncbi.nlm.nih.gov/pubmed/19521443


Interesting how the government publishes this and yet the CDC was forced to admit that CFS is not only a very real condition, but a very serious condition. And the CDC's 5000 research studies all point to physiological reasons for this "syndrome". (another joke).

Avatar universal
by PlateletGal, Jun 14, 2009

Interview with Dr. Fred Friedberg.... psychologist and CFS patient:

http://aboutmecfs.org/Int/IntFriedbergI.aspx

Avatar universal
by quaymanno2, Jul 04, 2009
A long submission, which includes information on 10 ME/CFS surveys, on the CDC's draft research plan for CFS can be read at http://tinyurl.com/TKonCDCsplans1 and http://tinyurl.com/TKonCDCsplans2


458072 tn?1291418786
by peggy64, Jul 04, 2009
It all boils down to one word: money.

Avatar universal
by quaymanno2, Jul 04, 2009
Plateletgal wrote to me to say there was a problem with the links.  Here are the full links in case anybody wants them:
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0907A&L=CO-CURE&P=R118&I=-3
and
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0907A&L=CO-CURE&P=R977&I=-3

Avatar universal
by PlateletGal, Jul 04, 2009

Thank you, quaymanno2.

Happy 4th of July !

Avatar universal
by VaBreeze, Jul 04, 2009
Tinny Tim's "Tiptoe Thru the Tulips" could well be the CDC's theme song regarding FMS/CFS.  For the many decades that these illnesses have been around...they still "tiptoe" past research and proper treatment.

Avatar universal
by PlateletGal, Oct 04, 2009
How to write to CFSAC - deadline October 15 for submissions

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) of the Department of Health and Human Services, Office of the Secretary Office of Public Health and Science, U.S., will hold a meeting October 29, 2009, in Washington where the public is invited to participate and/or submit printed material for the meeting.  Submissions can be five typed pages or less.

The submissions are copied to the members of the CFSAC in advance of the meeting and are also placed on the website (one can say one doesn't want to do the latter as far as I know).

People from outside the US can give written submissions to the CFSAC meeting.

***** The deadline for submissions is October 15. ***** The details are in this:http://edocket.access.gpo.gov/2009/pdf/E9-21334.pdf  Basically submissions have to be sent to: ***@****

Avatar universal
by PlateletGal, Oct 04, 2009
Let me know if you would like the e-mail address to submit your testimony or simply visit this link and you will find it:

http://edocket.access.gpo.gov/2009/pdf/E9-21334.pdf



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