Wednesday, June 17, 2009

Epidemic Myalgic Encephalomyelitis

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 it
has 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, the Cheney/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 treatments
for the disease, and critically to ban blood donations and stop the spread of
this 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 and
human rights abuses. Advising doctors not to do the very tests that would
confirm the disease? That is CDC policy.

It began with a botched investigation of a major outbreak
of M.E. in a tourist village at Lake Tahoe, where the CDC ignored the
biomarkers 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" using
the 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 removed
from their families, what kind of society allows this?

The first recorded epidemic was initially described by
the 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 in
1955, M.E. was named by Sir Donald Acheson in 1956 and described by A.L. Wallis
in 1959. The distinguished neurologist Lord Brain
included it in the standard textbook of Neurology in 1962. Drs Melvin
Ramsay and John Richardson had Benign Myalgic Encephalomyelitis recognised by
WHO in ICD-8 at Code 323 under Diseases of the Central Nervous System in the
1969 edition of the WHO-ICD.

Why was M.E. moved to Code G93.3 Other Disorders of the
Brain with CFS listed as a synonymous term – can the CDC explain why it is now
in 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 fateful
outbreaks in the 1980s.

In 1978 the Royal Society of
Medicine 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 "A
serious legitimate diagnosis CDC PRIORITY 1 disease of public health
importance", and then failed to fund it adequately, promoted it as a
recoverable 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 its
obligation to protect the public, it proceeded on a program of denial, failing
to alert the public or the responsible health agencies of this serious public
health 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 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 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 enteroviral
contagion 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 the
world as it claims but has again been caught out in funding abuses; and
independent research has had to step in - it is The Chia Enterovirus
Foundation, The Whittemore Peterson Institute, MEResearchUK and The (ME)CFS
Research Foundation that are unravelling this complex disease. The NIH must also 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 Post
Polio 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 a
meaningless 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 the
serious nature of the disease as technological advances did for M.S. in the
1950s. Knowledge of the previous epidemics would have apprised all medical
personnel of the parallels with poliomyelitis and enteroviral etiology, enabled
early detection in the acute stage of the disease, created demand for a massive
injection 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 are growing and the hidden death rate is steadily climbing. The CDC has had every
opportunity 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 about
Myalgic 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 Myalgic
Encephalomyelitis and the adaptation of a research version of the Canadian
Consensus Guidelines, the only medically relevant guidelines with *diagnostic tests* and treatment

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 into
the 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 conducted
on 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


1)  Enteroviral Myalgic Encephalomyelitis – EvME
[ME/CFS]. A treatise on EvME by Dr Irving Spurr

2)  Myalgic Encephalomyelitis (Chronic Fatigue
Syndrome) – Research References Update

3)  Reference Index Of Papers Published On
Epidemics of ME 1934-80 (collected by Dr J. Gordon Parish)

The Late Effects Of ME - Can they be distinguished from the Post-Polio

Dr. E.G. Dowsett MB, ChB Dip Bact.
Honourary Consultant Microbiologist, Basildon and Thurrock Hospitals NHS Trust

5)  What is ME? What is CFS? Information For Clinicians And Lawyers –
Prof Malcolm Hooper et al

History and
classification of ME, How "CFS" displaced ME in the UK

6)  Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and
Guidelines for Medical Practitioners

An Overview of the Canadian Consensus Document -
Carruthers, van de Sande et al

7)  The Clinical and Scientific Basis of Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome

Hyde, Jay Goldstein, Paul Levine – Published by The Nightingale Research

8)  Osler's
Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic -- Hillary

The Committee for Justice and
Recognition of Myalgic Encephalomyelitis

The History, Science and Politics Affecting Patients Disabled by M.E. around The Globe

* * *
I'll verify that.  I used to be a regular blood donor, and it took moving to another city to get the blood bank to stop calling me.  My specialist had told me not to donate; if they didn't want blood from people with AIDS, then they wouldn't want blood from people with what was called "AIDS Lite".  But the blood bank was only concerned with whether I was HIV+, not what other viruses I might be carrying.  Would you want to risk a transfusion that might give you an incurable disease?
Fortunately, it appears from further research into the similarities between CFS and polio that the virus may only be contagious for a few days in the initial stages, and is then replaced with antibodies.  But still, it's not a risk that CDC should be exposing people to until they are absolutely positive that the recipient is not going to get CFS on top of what they're already suffering.


1 comment:

Regis said...

At any rate, I liked some of the NIH cartoons on VADLO search engine!