Epidemic ME cfsac cdc tests human rights

Discussion in 'Fibromyalgia Main Forum' started by simpsons, May 22, 2009.

  1. simpsons

    simpsons Member

    Again another brilliant letter with links to evidence and papers. i think its a good point that there are tests to diagnose ME. That there are human rights abuses. In fact every point made here is excellant and well put backed up with evidence.

    the links to the evidence are at the bottom;

    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

  2. outofstep

    outofstep Member

    thanks! It will be interesting to watch on the 27th to see what the CFSAC recommends re: the CDC
  3. skeptik2

    skeptik2 Member

    Haven't seen it better...

    Could be used for a Congressional Inquiry and/or a Class Action Lawsuit!

    kudos galore, John Anderson!!!

    [This Message was Edited on 05/22/2009]
  4. TeaBisqit

    TeaBisqit Member

    Really excellent and truthful info. If only we could make everyone in the world read it and understand it.
  5. outofstep

    outofstep Member

    WP has the blood samples from the 80s-preserving that blood was the smartest thing that anyone could have done and we owe them huge thanks.
  6. TeaBisqit

    TeaBisqit Member

    I pray in my lifetime that the real truth does come out and we get the respect we deserve. It's not fair. There is no other disease in the world where people get treated horribly like we do. And the disbelief we suffer and losing friends and family because no one understands. And then we have to go to docs who don't know anything so we get inferior treatment. None of this is fair or right. The same global effort that is being put into the new swine flu should have been put into this disease.
  7. simpsons

    simpsons Member

  8. outofstep

    outofstep Member

    as long as people keep speaking out, especially at these govt. public meetings, and as long as the WP keeps doing this research-I'm seriously thinking within 5 years, hopefully sooner. If Ampligen is approved next week, or even gets an approvable, it will lend a lot of legitimacy to the disease. But we have to keep fighting-we can't become complacent

    The CDC would be smart to denounce their own program now before the truth comes out.
  9. skeptik2

    skeptik2 Member

    Twenty-one has been long enough!

    This should be kept at top of page for all of us to read and reread and take notes and plan our strategy for a Congressional Inquiry and/or Class Action suit.

    I am serious. I cannot wait 5 more years; neither can my 21 y.o. granddaughter!!

    BUMP, please.

    Help me, folks, let's keep all of these vital posts at the top of PAGE ONE!

    Love you all,
  10. simpsons

    simpsons Member

  11. simpsons

    simpsons Member

  12. quilp

    quilp New Member

    umping....as it were
  13. simpsons

    simpsons Member

    We now have an insight as to just how this can be infectious so its important that we do not stop our advocacy now.

    Keep this snowball that is the ME movement going and let it hit the cdc and wipe out its old policy. The cdc still have to approve the recommendations of the cfsac. So lets keep the pressure on

  14. Khalyal

    Khalyal New Member

    We have a window of opportunity to get this message out right now, while the iron is fairly hot. Let's keep shouting!

  15. cfsgeorge

    cfsgeorge New Member

    The proof is undeniable. There have been dozens of outbreaks documented from around the world. It is further solidified by veterans with GWS which have a documented infectious rate of ~70%. And there are studies saying most PWC have re-activated viral infections(EBV/CMV/HHV6/etc) which are contagious.

    So why is there no documentation about infectious rates on PWC in the general public? That's because the funding and policies to do epidemiological studies on veterans with GWS are different from PWC in the general public. Veterans are a powerful group and have separate military funding and healthcare system from the general public. Studies done on veterans are not under the control nor funded by the CDC. The CDC looks after the public by controling the healthcare policies that concern the public.

    So why didn't the CDC do any epidemiological studies to see if CFS is infectious? Why did they not do this simple study even after all the confirmed outbreaks and after so many decades? All we have are individual public accounts from PWC saying they passed on their CFS to other family members.

    Without an epidemiological study to confirm this, CFS can never be classified as an infectious disease by the US government. Why won't the CDC prove or disprove whether CFS is infectious with a simple epidemiological study? Has anybody ever asked the CDC or any of the head directors for CFS about this?
  16. mezombie

    mezombie Member

    Great stuff here from John Anderson.
  17. skeptik2

    skeptik2 Member

    The CDC is not going to change no matter what the CFSAC tells the DHHS; they have no accountability to anyone, it seems. They have never changed, and they never will. I'm saying it on all this posts now, and I'll continue to say it.

    I have OP filed under "Legal ACTION". It is a strong case, brilliantly written by John, and I support this 100%.

    We must get to the HELP Senate committee with this and Hillary's speech at the IACFS conference in London.

    Let's find a way to do it; I can only encourage, I do not have the computer capacity to send "links" and attach documents like this.

    I know John would give permission, if asked, to send this to someone else too, maybe to start a Congressional Inquiry or Class Action Lawsuit.

    SOMEBODY must know an honorable firm that woud take on this case!

    Love ya,

  18. skeptik2

    skeptik2 Member

    Yes, it is very revealing that the CDC has not done the studies that would show transmissability and demographics like was done with the swine flu.

    I have to say, I don't think the CFSAC or anyone else has a way to make the CDC change course unless Reeves is held accountable for the damage he has done. That's why I think a Congressional Inquiry or Class Action Lawsuit is the only way to go.

    In the CAL, it would be tremendous PR if the ME patients let the media know they don't want ANY money, as is usual in CALs, but the law firm would be able to recoup expenses and then some, and maybe get money to give to WPI, to help open those research/treatment centers.

    That would say a lot about the goals of M.E. patients; they aren't looking for something just for themselves, but for the world's future health.

  19. skeptik2

    skeptik2 Member

    Yes, it is very revealing that the CDC has not done the studies that would show transmissability and demographics like was done with the swine flu.

    I have to say, I don't think the CFSAC or anyone else has a way to make the CDC change course unless Reeves is held accountable for the damage he has done. That's why I think a Congressional Inquiry or Class Action Lawsuit is the only way to go.

    In the CAL, it would be tremendous PR if the ME patients let the media know they don't want ANY money, as is usual in CALs, but the law firm would be able to recoup expenses and then some, and maybe get money to give to WPI, to help open those research/treatment centers.

    That would say a lot about the goals of M.E. patients; they aren't looking for something just for themselves, but for the world's future health.

  20. cfsgeorge

    cfsgeorge New Member

    skeptik2- i applaud you and others who are fighting for our cause. it's a real struggle as a PWC to try to do everything involving CFS/ME. It's taken me at least a year of pure rest before i am able to participate here in this forum. Even so, i can really only contribute to the "science" of CFS/ME since i have a medical and health background. We are all unique and we we should use our strong points where we can in this fight. Activism is new to me, but please keep us informed and let us know how we can participate.

    outofstep- i read only part of hillary's oslers web. It is a huge book and very detailed. At this point with my cognitive difficulties, i am unable to read such a detailed book and try to memorize the facts. it became pointless for me to continue because i am not able to remember the things i've read. My short term memory is terrible and just reading a bit at a time wears me out. It's easier for me to read "leisurely" books for purely entertainment where i don't have to memorize or comprehend anything. Trying to figure out this "puzzle" of CFS/ME really drains the heck out of me.

    For those who live in the los angeles county, osler's web and many CFS books are available at your local public library. All LA county libraries are now interconnected through the use of networked computers. you can order up any book or dvd from any la county libraries to be delivered to your local library free of charge. you can even do it from your home computer. all you need is a libarary card. i don't know if orange county or san bernardino counties have this system in place yet, but it has been a great service for me. hope it helps you.