CFSAC meeting May 27-28 - testimony/reports/etc

Discussion in 'Fibromyalgia Main Forum' started by QuayMan, May 24, 2009.

  1. QuayMan

    QuayMan Member

    I thought I'd start a new thread for either reports on the meeting, thoughts on the meeting or submission/testimony.

    Just a reminder that the meeting will be webcast at Please click on "Click to Watch." Realplayer is required to view the videocast. This meeting will also be archived i.e. to be watched later. It is important that a good number of people take a look as this is the first time they have done this and they have said they will be keeping an eye on the numbers using the facility.



    Testimony to CFSAC meeting, May 27-28, 2009

    Testimony to the
    Chronic Fatigue Syndrome Advisory Committee (CFSAC) of the
    U.S. Department of Health and Human Services
    United States Federal Government
    Washington, D.C.

    May 27, 2009

    Mary M. Schweitzer, Ph.D.

    Thank you for allowing me this time to speak.

    First I need to catch everyone up with how my own case is going. As most of you know, I lost Ampligen fifteen months ago. I testified one year ago that I thought I would get twelve months before I relapsed, based on what happened when I voluntarily went off Ampligen in 2001. Unfortunately, I only had 9 months. I relapsed on Labor Day weekend, and three weeks later I was at Dr. Peterson’s being tested.

    Some of the results were back by my October 2008 testimony. My VO2 MAX score had been normal the last time I was there; now it was 16 (very abnormal). I tested positive for EBV reactivation again, and I had a low natural killer cell count and function. In the past I have tested positive for HHV-6 and 37kDa Rnase-L, but they disappeared while on Ampligen and neither had reappeared yet.

    Since then, I found that we can add cytomegalovirus (CMV) to the active viruses, and the September SPECT scan “demonstrated decreased activity in the left lateral temporal lobe and occipital lobes.” In February I had an abnormal Holter Monitor test that may or may not be related to the NMH/POTS I’ve known about since 1995.

    My symptoms are much worse than they were a year ago. I have not driven a car since November (I get too confused). As you can see, I have to wear sunglasses indoors around bright lighting. I have problems with short-term memory, expressive dysphasia, ataxia – the full list of what I used to call my “encephalitic” symptoms. I spend a lot of time lying in bed in the dark, listening to a movie, but I also am able to go on internet for periods of time during the day. And my husband likes to throw me and the wheelchair in the car and get me to a baseball game a couple of times a week. (He took me to every Phillies World Series game in the wheelchair, with a blanket wrapped around me – glad he did.)

    We tried Vistide, a strong antiviral recommended for CMV, but my liver rejected it. I am going to have a lumbar puncture soon. Dr. Peterson and the Whittemore-Peterson Institute have found they get more information from spinal fluid than from blood tests, and we can try to target the problems more precisely.

    Although I am obviously unwell, I consider myself lucky. I am lucky because I have both private and public disability. I am lucky because I have very good Blue Cross/Blue Shield insurance through my husband. I am most lucky because my husband and family have stood by me all this time. My daughter sent me a bouquet of flowers for Mother’s Day – she wrote on the card, “I only wish it was a bouquet of Ampligen.”

    What does a person do who is as sick as I am, without the help that I have? Where do they go? Working is not an option. I very quickly get incoherent. I walk so far, and then I stand there and fall over. I cannot work. So where would I be? On the street, I guess. You tell me.

    I paid $20,000 a year for Ampligen – and would gladly do so again. But most of my friends live on far less. If I had only social security disability, I would be living on $9600 a year, like many of my friends. Try to figure out how to fit in rent, food, and some sort of transportation on that. A computer to link you with the outside world becomes a luxury. Medicine? Impossible. Nobody takes Medicare – and it doesn’t cover most of the tests I’ve had anyway.

    For that matter, if you go to the CDC’s website for physician information on CFS, you won’t find any of the tests that have shown things physically wrong with me. They suggest the usual blood tests – I test normally on all of them. In fact, they list some of my testing – for HHV-6 or NMH/POTS, for example – as something not to give a patient with CFS. As they state in the beginning of the information packet, “There are no tests and there are no treatments.” That’s not been true for me – but then, I’ve often paid cash.

    Ever since the cluster outbreaks of the mid-1980s, CDC has stood in the way of information about this disease. Despite the observations of specialists that the outbreaks appeared to be cases of Myalgic Encephalomyelitis (called Epidemic Neuromyesthenia at the time in the United States), the CDC insisted that it was a new disease entirely, chronic Epstein-Barr Virus. When CEBV became untenable (they should have stuck a little longer with that, as it turns out), they shifted to a name that sounded like CEBV without the virus – chronic mono syndrome = chronic fatigue syndrome.

    Chronic as in “chronic complainer,” “fatigue” as in “yeah, I’ve been tired lately, too,” and “syndrome” as in “syndrome of the month.” A focus group could not have come up with a more dismissive name.

    It was a gamble. Twenty years later, how has that gamble played out? Who is better off because they chose to name the disease “chronic fatigue syndrome” and ignore existing information about Myalgic Encephalomyelitis? It hasn’t helped patients – if anything, it has harmed us. But it does make it easier to characterize this disease as psychosomatic, “factitious,” even as neurasthenia by the very British psychiatrists the CDC hires as consultants on CFS. It makes it very easy to describe CFS as simply a collection of MUS (Medically Unexplained Symptoms). That has been a real boon to the insurance industry.

    There is a group currently working on getting some form of the “MUS” category adopted in both ICD-11 and DMS-V – aiming right at us, patients diagnosed with CFS.

    Thanks a lot for giving us that name.

    Since 1996 I have attended and testified at almost every CFSCC and CFSAC meeting. But whenever we bring up evidence of biomarkers, physiological explanations of symptoms, or active viral onslaught, CDC has responded in every case by swatting it away like a gnat.

    Here is the pattern. I take the train to Washington, I come to the meetings, I give my five minutes of testimony, and I pass out a written version. At first we were allowed more than five minutes, which was a kindness to people who have trouble speaking. We were even allowed to ask questions of the committee. But since 2003, it’s been five minutes only, and no questions to the committee from the gallery. Some of my previous testimony can be found on my website here:

    I come and speak about having the Rnase-L Factor, and suggest that the test be made available. Bill Reeves of CDC would say, as soon as I was through, “It can’t be replicated.” That’s simply not true, but I didn’t have a microphone to be able to respond. In an NIH funded study, 98 of 100 patients from the Incline Village cluster outbreak tested positive for the 37kDa Rnase-L (it should weigh 80 kDa). 0f 100 patients with fibromyalgia, 100 with major melancholic depression, and 100 normals, only 2-3 percent tested positive in each of those three groups. That’s a pretty significant result.

    Then the samples were sent, blinded, to two French researchers studying the same thing using a different method. They correctly identified each sample. I would call that replication. Two countries, two methods, same sample. 100 CFS patients and 300 controls. That’s replicated. CDC just didn’t replicate it themselves, so it doesn’t count.

    I testified about having HHV-6, Variant A, and that we suspected it was causing encephalitis. As I began to describe that both the markers and the worst symptoms disappeared on Ampligen, the late Stephen Straus from NIH rose in the back of the room to interrupt. “You never had HHV-6 at all,” he said. “Only 3 people in the United States know how to diagnose it.” “Well then,” I replied, “would you like to come up to the microphone and state for the record that Dr. Dharam Ablashi, who discovered HHV-6 and has done all my testing, does not know how to test for it?” He left the room without a word. You won’t find that in the minutes. They used to be sanitized.

    Later on, when I noticed something was wrong with the two-day Wichita hospital study where Reeves’ new questionnaires were supposedly shown to effectively diagnose CFS-Fukuda, I testified that I believed Dr. Reeves was no longer really using CFS-Fukuda – that his questionnaires did not distinguish between CFS and simple chronic fatigue on the basis of post-exertional fatigue or cognitive dysfunction. Someone from the committee stopped me and said, “I just don’t believe that.” So I turned to Dr. Reeves, seated to my right. “Why don’t you field this? Am I right?” Dr. Reeves folded his arms, said “I don’t have to answer to you” and then swiveled his chair away from me so I faced his back.

    And that’s how it always went. Later a “study” might appear – after I testified about HHV-6, Dr. Reeves published a study in 2000 used 26 CFS patients to “prove” that you could not distinguish the CFS patients from others on the basis of HHV-6. See

    The two-day Wichita study is when the real problems first surfaced with Dr. Reeves’ new definition for CFS – his so-called “international empirical definition” – he only diagnosed 6 patients who had been identified with CFS in the 3-year Wichita population study, and added 4 more from the chronic fatigue (but not CFS) group. On the whole, 43 patients were identified by the questionnaires as having CFS-Fukuda – but only 10 of them could be defined as having CFS-Fukuda using the old methods.

    To my knowledge this is the only time that those questionnaires were ever tested for accuracy by CDC. Dr. Lenny Jason tested them, however, and found that they lopped off the worst cases, while adding in patients with depression. Reeves ended up with an estimate that was ten times his previous estimate from 1998. Either there was something wrong with this definition, or this epidemic should have been on CNN.

    The CDC needs to disavow Dr. Reeves “international empirical definition” and the accompanying questionnaires now. Return to the 1994 CFS-Fukuda definition, and while you are at it, return to the goals stated in the Fukuda article presenting that definition. And after all this time, we would also like the adoption of WHO’s coding and definition of Myalgic Encephalomyelitis as a neurological disease.

    In 1994, Fukuda suggested that the next goal should be to identify subgroups through biomarkers and other objective tests. But as we have seen, CDC has done precisely the opposite. Instead of breaking up a clearly heterogeneous set into smaller, homogeneous subsets, Reeves went the other way, broadening the definition to include patients with mental illnesses.

    Instead of identifying subgroups with biomarkers, every time a viable biomarker was presented to CDC, they responded by insisting it was no use because not everybody with CFS had the biomarker.

    Of course not. That’s why it’s called a subset!

    The truth of the matter is that the so-called research name and definition, “chronic fatigue syndrome,” has too many conflicting definitions both in the United States and abroad. We have the Holmes, Fukuda, and Reeves definitions here. Psychiatrists in the UK have used a definition that does not permit any physical symptoms at all, and includes depression. The UK definition of CFS bears absolutely no relationship to the CDC’s, but the literature has circulated as if they were the same.

    British psychiatrists who have been paid by CDC as consultants on CFS – Peter White, Michael Sharpe, Simon Wessely, Trudy Chalder - have created a completely theory-driven model of what CFS is. They claim that these women (they believe it is almost entirely women) probably were sick at one point, but can’t bring themselves to get out of bed. Ten weeks of “cognitive behaviour therapy” can teach the patient to “relinquish the sick role,” followed by ten weeks of “graded exercise therapy” to get them back into shape. That is all you are going to get for treatment from British public medicine, which is a travesty I thought would not come to the United States.

    Until now.

    Dr. Reeves’ questionnaires were based upon Simon Wessely’s. The estimate for CFS prevalence is identical to Wessely’s. And as Dr. Jason has shown, the researcher will end up with a data set that looks a lot more like Wessely’s than like CFS-Fukuda or CFS-Holmes. You can already see the difference in the early results from Atlanta.

    Isn’t it ironic? Twenty-five years after the Incline Village cluster outbreak, nobody from that group would fit the CDC’s new definition of CFS.

    Shouldn’t a diagnosis at least fit the patients it was created to describe?

    With everything my people – patients with ME or a diagnosis of CFS – have suffered from at the hands of the CDC, they saved the worst for last – adopting the British psychiatric definition disguised as a “new empirical” one.

    This must not continue. We already have a million sufferers, but only 15% have any idea what is wrong with them – according to CDC – and of those who have a diagnosis, only a handful have a doctor.

    This disease is contagious at some stage in its history. How long are you going to allow this silent epidemic to continue? How many people’s lives will be ruined?

    The CDC itself had an economist study patients in Wichita, and found that households with a CFS patient lost $20,000 annually. Using the Jason estimate of 1 million patients, that would be $20 billion lost in annual productivity – and $7 billion a year in income tax revenues. Somehow $6 million a year for research seems a bit penny wise and pound foolish.

    If left untreated, we can only become more expensive as we age. We are seeing patients die early of heart disease, lymphomas, stem cell cancer. That’s not cheap.

    The current emphasis on having to save money to justify caring for sick people prompts me to have to make those crass statements, to have to make the argument that you should treat this disease because it is economically sound.

    Can we not at least discuss the cruelty of it? What has happened in this country that one million people and their families have had their lives destroyed, and nobody cares. The majority of these people have become impoverished by this disease – and nobody cares. We have returned to the world of Charles Dickens. Why are we allowing this to be so?

    The formal name of CDC is Centers for Disease Prevention and Control. All anybody wants to talk about is prevention – well, if you want to prevent the spread of this disease, you better start spending more money than you already do on finding the cause. I note that Dr. Reeves said he wanted to do that – study “incident CFS”, which means simply “new cases of CFS.”

    But to be true to the other mission – to control disease – it is also necessary to study the rest of us, the “prevalent cases,” if you will – those who have been sick for decades and continue to suffer. Those who, because they have no money, suffer from other conditions as well. I am glad that tomorrow you will be studying children and adolescents, because we have to stop the disease before their lives, too, are lost to it.

    Many of us came to testify (or waited on the phone) for the CDC’s stakeholders’ meeting in April. Before we could talk about CFS, however, we had to listen to a little speech on swine flu. Swine flu, a disease that has yet to hit with anywhere near the severity of the regular annual outbreak of influenza.

    There we were in front of you, all victims of a disease that has been permitted to spread unabated for 25-30 years. And we were still invisible.

    How much longer are you going to ignore this epidemic?

    Posted by Mary Schweitzer on May 20, 2009 at 1:30pm

    [This Message was Edited on 05/24/2009]
    [This Message was Edited on 05/25/2009]
    [This Message was Edited on 05/26/2009]
    [This Message was Edited on 05/27/2009]
    [This Message was Edited on 05/29/2009]
  2. QuayMan

    QuayMan Member

    From Co-Cure:

    [Word count: (excluding appendices and references for petition): 1259 words]

    Tom Kindlon's Written Testimony: CFSAC Meeting May 2009

    My name is Tom Kindlon. I have CFS for over 20 years, having previously
    been healthy (and very "sporty"). Unfortunately it took me over 5 years to
    get diagnosed. By the time I was diagnosed I was virtually bedbound and I
    have only improved a small bit since then i.e. I have been housebound with
    CFS for nearly 15 years.

    Before my CFS deteriorated, I was studying Mathematical Sciences in Trinity
    College Dublin (I got straight Firsts in the last year I did there - second
    year exams) so have some knowledge of mathematical and statistical

    I have been on the committee of the Irish ME/CFS Association (formerly the
    Irish ME/CFS Support Group) since 1996 and have been Assistant Chairperson
    since 1997. Amongst other things, I have helped organise the Association's
    response to thousands of enquiries in that period and have talked with
    hundreds of people with the condition. I have also been on Internet CFS
    forums since 1995 and thus heard people from around their world describe
    their illness and the effect it has had on them, as well as participating in
    many interesting discussions. I believe I have a lot of useful knowledge
    and experience in the area. In the last twelve months, I have had two
    letters on the subject of CFS published in Pubmed-listed journals.

    I am very concerned about the "empirical" definition (Reeves, 2005) the CDC
    has adopted for CFS research in recent years.

    I have posted numerous online comments to papers relating to the definition
    but the CDC has never responded to any of the points.

    Frustrated by the CDC's continued use of the definition, I set up a petition
    on the issue on the 15th of April, 2009 (i.e. last month). This petition is
    summarized in 10 words as,
    "CDC CFS Research should not involved the empirical definition (2005)"

    The petition

    We call on the Centers for Disease Control and Prevention (CDC) to stop
    using the "empirical" definition[1] (also known as the Reeves 2005
    definition) to define Chronic Fatigue Syndrome (CFS) patients in CFS

    The CDC claim it is simply a way of operationalizing the Fukuda (1994)
    definition[2]. However the prevalence rates suggest otherwise: the
    "empirical" definition gives a prevalence rate of 2.54% of the adult
    population[3] compared to 0.235% (95% confidence interval, 0.142%-0.327%)
    and 0.422% (95% confidence interval, 0.29%-0.56%) when the Fukuda definition
    was used in previous population studies in the US[4,5].

    The definition lacks specificity. For example, one research study[6] found
    that 38% of those with a diagnosis of a Major Depressive Disorder were
    misclassified as having CFS using the empirical/Reeves definition.


    [1] Reeves WC, Wagner D, Nisenbaum R, Jones JF, Gurbaxani B, Solomon L,
    Papanicolaou DA, Unger ER, Vernon SD, Heim C. Chronic fatigue syndrome--a
    clinically empirical approach to its definition and study. BMC Med. 2005 Dec
    15;3:19. Link:

    [2] Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The
    chronic fatigue syndrome; a comprehensive approach to its definition and
    study. Ann Int Med 1994, 121:953-959.

    [3] Reeves WC, Jones JF, Maloney E, Heim C, Hoaglin DC, Boneva RS, Morrissey
    M, Devlin R. Prevalence of chronic fatigue syndrome in metropolitan, urban,
    and rural Georgia. Popul Health Metr. 2007 Jun 8;5:5.

    [4] Reyes M, Nisenbaum R, Hoaglin DC, Unger ER, Emmons C, Randall B, Stewart
    JA, Abbey S, Jones JF, Gantz N, Minden S, Reeves WC: Prevalence and
    incidence of chronic fatigue syndrome in Wichita, Kansas. Arch Int Med 2003,

    [5] Jason LA, Richman JA, Rademaker AW, Jordan KM, Plioplys AV, Taylor RR,
    McCready W, Huang CF, Plioplys S. A community-based study of chronic fatigue
    syndrome. Arch Intern Med. 1999 Oct 11;159(18):2129-37.

    [6] Jason, LA, Najar N, Porter N, Reh C. Evaluating the Centers for Disease
    Control's empirical chronic fatigue syndrome case definition. Journal of
    Disability Policy Studies 2008, doi:10.1177/1044207308325995.

    Further reading:
    Problems with the New CDC CFS Prevalence Estimates
    Leonard Jason, Ph.D., DePaul University i.e.


    I'm the first to admit that this isn't exactly the "catchiest" petition that
    has ever been created. One might think it would be lucky to get a few dozen

    However already, in just over a month, 651 people have signed (at the time
    of writing). Many have left comments which can be read on the site:
    [Aside: other people have also left comments but for some reasons the
    comments have not gone up].

    I believe this shows the depth of feeling there is on this issue.

    If one looks at the CFSAC's function, it is clear that the issues relating
    to the definition are fairly central:

    The Committee shall advise and make recommendations to the Secretary,
    through the Assistant Secretary for Health, on a broad range of topics
    including: (1) the current state of knowledge and research about the
    epidemiology and risk factors relating to chronic fatigue syndrome, and
    identifying potential opportunities in these areas; (2) current and proposed
    diagnosis and treatment methods for chronic fatigue syndrome; and (3)
    development and implementation of programs to inform the public, health care
    professionals, and the biomedical, academic and research communities about
    chronic fatigue syndrome advances.

    For example, as I pointed out, prevalence estimates from CDC research jumped
    from 235 per 100,000 to 2540 per 100,000! That is to say that nearly 11
    times as many people are diagnosed with the new "definition" as the old
    definition. This is clearly relevant for point 1. Who are these people?
    Do they all really have the same illness? I find it strange that, for
    example, somebody can score 100 out of 100 on the physical functioning
    subscale of the SF-36 (as well scoring the maximum on other subscales) but
    if they score low on the Role Emotional Subscale, they can be classed as
    being functionally impaired and hence satisfy that important part of the CFS
    definition. I believe this allows too many people who may not have CFS to
    satisfy the criteria. This concern has been demonstrated to be valid by the
    study by Leonard Jason and colleagues (2008) which found that 38% of those
    with Major Depressive Disorder were misclassified as having CFS using the
    new definition.

    One of the external reviewers for the CDC program highlighted this problem
    when he was a reviewer for the Georgia prevalence study paper published in
    2007. Leonard Jason alluded to this in a piece he wrote that year:

    'In Peter White's Dec. 3. 2006 review
    ( of Reeves
    et al.'s (2007) article, he states: The use of physical function, role
    physical and social function sub-scales is consistent with the International
    Study criteria for CFS, which states that the illness "results in
    substantial reduction in previous levels of occupational, educational,
    social, or personal activities." (Reeves et al, 2003). The use of role
    emotional is not, since it specifically asks about change in function "as a
    result of any emotional problems". And later White states that "In order to
    make these important criteria consistent with other studies, I think the
    authors need to re-analyse their data, omitting this sub-scale.'

    Prof. White made other criticisms of the definition in his reviews - I'm
    including as an appendix one of his reviews on the issue.

    If one has a heterogeneous group of patients, it can mean that in
    intervention trials, if "true" CFS patients only make up a tiny fraction of
    the cohort, useful interventions could come up as showing no effect (or even
    being detrimental); alternatively, interventions may come up as being useful
    for CFS when in fact if one had only looked at those with "true" CFS, the
    intervention may have made no difference or may even have been detrimental.
    So you can see it is a serious issue.

    Similarly with regard to risk factors for the illness, incorrect information
    could be gathered. For example, the CDC have now done not one but two
    studies looking at the relationship between CFS and Childhood trauma.
    However the results may have looked very different had a different
    definition been used. The same applies to biological testing and also the
    search for biomarkers - having a very broad and inexact definition means
    progress in that area may never occur.

    I am unsure of the specifics of how the CFSAC acts but I hope it will be
    able to do something on this issue. My views are inline with what I have
    read by Dr Leonard Jason on the issue so I would ask people to listen
    carefully to whatever points he has to make on the issue.

    I am appending comments I have posted on articles, which show my general
    concerns. These are generally referenced comments, which had to be reviewed
    before they were posted (beside the CDC papers). The method the CDC is
    using to define Chronic Fatigue Syndrome can be a bit difficult to
    understand so the comments may also help people understand what the
    definition actually is.

    Thank you for your time.

    Tom Kindlon

    Appendix 1: Comments I have been made on the "empirical definition" (Reeves,
    2005) that have been "published" online beside CDC papers.
    [Aside: I have not actually included all of the comments here]

    [Internet version: In what I submitted, I included the comments (I didn't
    send in the first comment from the first link). However if I included them
    here, it would make the E-mail very long. It is also much easier to read
    the comments at the site as they are formatted]
    [AOL: <a
    [AOL: <a
    [AOL: <a

    Appendix 2:
    Prof. Peter White commenting on the empirical definition (Reeves, 2005)
    [AOL: <a
  3. simpsons

    simpsons Member

    Epidemic ME cfsac cdc tests human rights

    John andersons submission

    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
  4. skeptik2

    skeptik2 Member

    To distinguish this wonderful post from your other of almost the same name, could you edit your title to signify that these will be submissions at the CFSAC meeting?

    It will be important for the newbies, especially, and also those who think CFS and FM are the same, to read them.

    It might also help recruit more written comments to be included in the report to DHHS Secretary Sebilius and more names on the ipetition.

    Thanks a bunch for sooooo much work!

  5. QuayMan

    QuayMan Member

    Hi skeptik2 and all,

    Thanks for your thoughts.
    I don't think I can edit at this stage.
    Also wasn't sure what it should be called?

    Here are links to other ones with similar titles:

    CFSAC meeting May 27-28 - people can give a submission over the phone

    CFSAC May 27-28 Meeting to be Videocast

    If the posts have links like these, hopefully other people will be able to find related threads.
  6. QuayMan

    QuayMan Member

    Posted on Co-Cure:

    To the Chronic Fatigue Syndrome Advisory Committee:
    It's quite clear that the CDC just keeps moving further and further away from studying the disease outbreaks in the mid-1980s from which 'CFS' was created. Biomarkers were identified by clinicians who saw patients during those outbreaks. Several physicians (including Dr. Paul Levine, a NIH epidemiologist at the time), noted that the disease conformed with previous outbreaks of Epidemic Neuromyasthenia, aka Myalgic Encephalomyelitis. There is a 50-year history of these types of outbreaks.
    The biomarkers found in the patient population of the mid-1980s have been consistently ignored by the CDC. Private researchers are doing their best with limited funds to follow-up on those markers and find new ones. The CDC actually hinders their progress. The CDC's 'CFS' program is not meeting any of the public health goals of the CDC. I strongly urge that it be dismantled, and that the CDC limit its involvement to collection of laboratory data on viruses and other pathogens found in 'CFS' patients.
    Recently, I wrote the following comment in response to the CDC's draft 5-year strategic 'CFS' research plan to the CDC:

    Whatever happened to the CDC's National Enterovirus Surveillance
    System (NESS)? From what I've been able to find through the internet, it was
    running from 1961 through 2005. Through NESS, private laboratories voluntarily
    reported findings of enteroviruses.
    Given increased reports of enterovirus infection in people diagnosed with 'CFS',
    why not resurrect this program?
    And, considering the number of patients describing an "infectious-type" onset
    who, after testing, are found to harbor a number of other viruses (see, for
    example,, why not expand the program to include
    Doing this is entirely in line with the CDC's historic role in monitoring emerging
    diseases and is highly appropriate for the agency's future involvement in 'CFS'.

    Since writing the CDC, I have found that a similar lab reporting system has existed since 2007, the National Respiratory and Enteric Virus Surveillance System (NREVSS). Unfortunately, only four viruses are currently monitored. (
    So I ask, respectfully, that the CFSAC recommend expansion of this surveillance system to include viruses and other pathogens identified by non-governmental researchers as associated with 'CFS'.
    Liz Willow
  7. simpsons

    simpsons Member

  8. mezombie

    mezombie Member

    Hi Quayman,

    Thanks for starting this thread!

    I agree with Skeptic2 that a change in title might get more attention.

    It's easy to edit your title. There is no time limit for editing.

    Once you're logged in, go to the first post in this thread. At the bottom left of the post, click on "edit my post". Then just go to the title bar and edit.

    Maybe you can call it

    "FYI-Read testimony & comments made to CFSAC to date"

    or something like that.

    After the CFSAC meeting, you can always edit this thread again and/or start a new thread for discussion.

    [This Message was Edited on 05/25/2009]
  9. QuayMan

    QuayMan Member

    Ok, mezombie and Skeptik2, have changed title.
    It was easy once I was logged in. Despite clicking "remember me", it never seems to remember me (unlike other sites/forums I go to).
  10. skeptik2

    skeptik2 Member


  11. QuayMan

    QuayMan Member

    Best of luck to anyone testifying at the CFSAC tomorrow (Wednesday) or

    For everyone else, don't forget that one can look at it either live, or
    later (see details below).
    There's a clock for calculating where you are in comparison to Washington DC at:
    We want to ensure they keep up this facility so it'd be good if the numbers
    looking were in the hundreds (at least).

    I'm appending the agenda below so people have the times. Also the "roster"
    so people know the regular "cast"!


    The meeting will be webcast at Please click on
    "Click to Watch." Realplayer is required to view the videocast. This meeting
    will also be archived.


    CFSAC Agenda - May 27-28, 2009
    U.S. Department of Health and Human Services

    [There's a clock for calculating where you are in comparison to Washington DC at:]

    Wednesday, May 27, 2009
    9:00 a.m. to 5:00 p.m.

    Thursday, May 28, 2009
    9:00 a.m. to 4:00 p.m.

    Room 800, Hubert H. Humphrey Building
    200 Independence Avenue, S.W.
    Washington, D.C. 20201


    Wednesday, May 27, 2009

    9:00 a.m.
    Call to Order
    Opening Remarks

    Roll Call, Housekeeping
    Dr. James Oleske
    Chair, CFSAC

    Dr. Wanda Jones
    Designated Federal Official

    9:15 a.m.
    Agency Updates: HRSA, SSA, NIH, FDA
    Ex Officio Representatives

    10:00 a.m.
    CDC Update
    Research Program Strategic Plan
    Public Meeting
    Next Steps
    Dr. Mike Miller

    12:00 p.m.
    Public Comment

    1:00 p.m.
    Subcommittee Lunch
    Subcommittee Members

    2:30 p.m.
    Subcommittee Reports

    Quality of Life
    Committee Discussion Committee Members

    4:00 p.m.
    Public Comment

    5:00 p.m.

    Thursday, May 28, 2009

    9:00 a.m.
    Call to Order


    Dr. James Oleske
    Chair, CFSAC

    Dr. Wanda Jones
    Designated Federal Official

    9:15 a.m.
    Presentation: Pediatric CFS Case Definition
    Leonard Jason, PhD

    9:45 a.m.
    Presentations: Experiences of Families, Children and Youth with CFS

    Family Perspective
    Youth Living with CFS
    Parent Perspective

    Lauren Allen and Mrs. Allen DVD (introduced by Dr. Bateman)

    Ms. Rita Driscoll

    11:15 a.m.
    Roundtable Presentation/Discussion:

    CFS and FII/MBP
    Office of Child Abuse and Neglect (HHS)
    Department of Education Office for Civil Rights

    Dr. David Bell
    Catherine Nolan
    Shelley Jackson

    Committee Members

    1:00 p.m.
    Subcommittee Lunch
    Committee Members

    2:00 p.m.
    Public Comment

    2:30 p.m.
    Discussion and Development of Recommendations
    Committee Members

    4:00 p.m.


    Roster of Committee Members

    Voting Members

    James M. Oleske, MD, MPH, CIP
    Newark, NJ
    Term: 01/03/06 TO 01/03/10

    Rebecca Artman
    Middleburg, FL
    Term: 01/03/06 to 01/03/10

    Lucinda Bateman, MD, PC
    Salt Lake City, UT
    Term: 01/03/06 to 01/03/10

    Ronald Glaser, Ph.D.
    Columbus, OH
    Term: 04/01/07 to 04/01/11

    Arthur J. Hartz, MD, PhD
    Iowa City, IA
    Term: 04/01/07 to 04/01/11

    Kristine Healy, MPH, PA-C
    Chicago, IL
    Term: 01/03/06 to 01/03/10

    Leonard Jason, PhD
    Chicago, IL
    Term: 04/01/07 to 04/01/11

    Nancy Klimas, MD
    Miami, FL
    Term: 04/01/07 to 04/01/11

    Jason Newfield, Esq.
    Garden City, NJ
    Term: 07/01/06 to 07/01/10

    Morris Papernik, MD
    Glastonbury, CT
    Term: 01/03/06 to 01/03/10

    Christopher Snell, PhD
    Stockton, CA
    Term: 04/01/07 to 04/01/11


    Ex Officio Members

    Centers for Disease Control and Prevention

    J. Michael Miller, PhD
    Associate Director for Science
    National Center for Zoonotic, Vector-borne, and Enteric Diseases

    Ermias Belay, MD
    Associate Director for Epidemiologic Science Division of Viral and
    Rickettsial Diseases National Center for Zoonotic, Vector-borne, and Enteric

    Food and Drug Administration

    Marc W. Cavaille-Coll, MD, PhD
    Medical Officer Team Leader
    Division of Special Pathogens and Immunologic Drug Products

    Health Resources and Services Administration

    Deborah Willis-Fillinger, MD
    Senior Medical Advisor
    Office of the Administrator
    Center for Quality

    National Institutes of Health

    Eleanor Hanna, PhD
    Associate Director for Special Projects and Centers
    Office of Research on Women's Health

    Social Security Administration

    Laurence Desi, Sr., MD, MPH
    Medical Officer
    Office of Medical Policy

    James Julian, Esq.
    Director, Office of Medical Policy


    Wanda K. Jones, DrPH
  12. QuayMan

    QuayMan Member

  13. mezombie

    mezombie Member

    Urk. They finally took a break!

    Just finished listening to Reeves' discussion of the five-year CFS research plan.

    The highlight so far, for me:

    The FDA representative on the CFSAC commented that he was "concerned" about the shifting CDC definition and its impact on clinical trials (just before the break).

    Reeves mentioned earlier that 350 email/written comments were received during the CDC's April public meeting on its 5-year CFS research plan. Some were multiples from the same person, but still! In addition, 8 people attended and spoke in person and 30 people testified by phone.

    He seemed surprised by the numbers, but otherwise didn't react.

    As far as I can tell, the public input has had no impact on the 5-year plan. Reeves'description of future CFS research same old/same old as far as I'm concerned.

    The CFSAC really wanted to to have a discussion with Reeves while his presentation was fresh in their minds, but public comments are up next.


    Pat Fero
    Mary Schweitzer
    Cort Johnson
    Kim McCleary
    (??? I missed some names)
  14. QuayMan

    QuayMan Member

    From the CFIDS Assoc. Facebook page-


    On behalf of the CFIDS Association of America, the largest and most active
    organization working to make chronic fatigue syndrome (CFS) widely
    understood, diagnosable, curable and preventable, please accept this written
    statement for the May 27-28, 2009 meeting of the CFS Advisory Committee

    CFS is a condition of immense magnitude and enormous public burden as
    measured by its:

    - *Prevalence* – There are up to 4 million cases among adults,
    adolescents and children in the U.S. alone.
    - *Duration* – Recovery definitions and rates vary, but few people fully
    and permanently recover to experience complete symptom remission.
    - *Disability* – The 1994 definition for CFS requires that the symptoms
    impose “significant reduction in previous levels of activity”; CDC estimates
    that at least 25 percent of CFS patients are fully disabled.
    - *Economic impact* – The direct and indirect costs of CFS have been
    estimated by researcher at DePaul University to be $17-25 billion per year;
    CDC has estimated the annual cost of lost productivity due to CFS to be $9
    - *Lack of diagnostic markers and/or tests* – Diagnosis is presently made
    by excluding other possible causes of symptoms, a process that can be
    lengthy and costly, especially to individuals who do not have insurance
    coverage or local access to health care services.
    - *Lack of effective treatment(s)* – In the absence of a known cause or
    fully defined pathophysiology, the aim of treatment is to relieve symptoms,
    improve function and enhance quality of life. Health care professionals are
    not adequately trained to manage CFS and patients often must coordinate care
    between providers, if they find knowledgeable care at all.
    - *Social stigma* – Lack of broad understanding and recognition of the
    severity and impact of CFS contribute to feelings of isolation and
    estrangement from family and other social support systems.

    In stark contrast to the magnitude of CFS is the rather minimal federal
    effort dedicated to advancing understanding and promoting research into
    diagnostics, treatments and prevention. Based on NIH’s public report of
    disease specific spending, funding for CFS research will be $4 million this
    year and is expected to fall to $3 million for FY10. CFS does not appear in
    any of the special announcements for funding opportunities under the
    American Recovery and Reinvestment Act (ARRA), although the CFIDS
    Association of America encouraged its funded investigators to apply under
    more general NIH Funding Opportunity Announcements under ARRA. NIH has
    targeted $60 million in ARRA funds to stimulate research on autism spectrum
    disorders. In its March 24, 2009 press release, NIH states that, “Targeting
    Recovery Act funds toward objectives identified in the IACC strategic plan
    will help move the science forward sooner than anticipated in addressing
    some of the most significant challenges to understanding and treating ASD.”
    The same could be said of an infusion of funding for CFS research.

    The Association requests that NIH strengthen the network of investigators
    funded under the FY07 CFS neuroimmune research initiative by stimulating new
    research initiatives, building multicenter collaborations and developing a
    data sharing and networking platform. It urges the NIH to establish an
    intramural CFS research program with relevant areas of scientific expertise
    to study disease pathophysiology, identify biomarkers, objective diagnostic
    tools and better therapeutic approaches. Finally, the Association urges NIH
    to prioritize CFS research using funds from the Recovery Act and to ensure
    that study sections responsible for reviewing grants on CFS include experts
    who are qualified in the appropriate disciplines.

    We await the draft of the five-year plan for the U.S. Centers for Disease
    Control & Prevention’s CFS research program. The Association remains
    concerned about the lack of measurable progress demonstrated by the program
    located in the Chronic Viral Diseases Branch and is not convinced that sole
    source contracts with Abt Associates and Emory University have produced
    meaningful outcomes commensurate with the millions of dollars expended, in
    spite of CDC’s assurances. The issue of the empiric classification of CFS
    patients used only by CDC remains a monumental stumbling block to
    collaboration and comparability, and the five-year plan should address this
    issue directly. In addition, the Association recommends that the following
    objectives be addressed in the plan:

    *Objective 1: Resource Maximization*
    *CDC Asset to be Leveraged:* Existing data sets from CDC-funded studies from
    *Measurable Outcomes By Which Progress Will Be Evaluated:* Publicly
    available, continuously updated, searchable online subject-oriented
    relational database of all de-identified data from CFS research studies that
    have completed enrollment.

    *Objective 2: Collaboration*
    *CDC Asset to be Leveraged:* Funds allocated to the CDC’s CFS research
    program expand the overall research effort, rather than keep them
    concentrated in an insular group
    *Measurable Outcomes By Which Progress Will Be Evaluated:* Competitive
    grants, cooperative agreements & contracts with external research
    institutions totaling at least 50% of the budget allocation for studies that
    will reduce disease morbidity through early detection, objective diagnosis
    and improved management

    *Objective 3: Translation*
    *CDC Asset to be Leveraged:* Knowledge base accrued over last 25 years,
    including expertise represented by the multi-disciplinary CFS research group
    and its past/present collaborators and contractors
    <.b>Measurable Outcomes By Which Progress Will Be Evaluated: Rapid and broad
    dissemination of educational/informational tools (including articles in the
    peer-reviewed literature) for primary care providers, researchers and the
    public (including patients and caregivers)

    *Objective 4: Transparency*
    *CDC Asset to be Leveraged:* Priority-setting and accountability for CFS
    research and education programs that are supported by CDC
    *Measurable Outcomes By Which Progress Will Be Evaluated:* Semi-annual
    reporting on the specific uses of funds and progress toward measurable
    outcomes identified in the five-year plan; disclosure of problems and
    pitfalls of studies as they are identified

    *Objective 5: Partnership*
    *CDC Asset to be Leveraged:* Implementation of research and education
    tactics by knowledgeable, capable organizations with diverse expertise
    *Measurable Outcomes By Which Progress Will Be Evaluated:* CDC’s active and
    direct engagement of a variety of stakeholders across public and private
    sectors in the research and education programs it supports

    In a March 11, 2009 letter to acting CDC director Dr. Richard Besser (see, the Association
    recommended that consideration be given to housing CFS activities in the
    National Center for Chronic Disease Prevention and Promotion. Dr. Besser has
    responded and indicated that this recommendation will be forwarded to the
    newly appointed CDC director, Dr. Thomas Friedan, as one of the options for
    agency-wide reorganizations being contemplated.

    The other agencies represented on this committee have important roles in
    developing a more robust response to the public burden imposed by CFS, but
    the inadequate size and scope of biomedical research supported by federal
    health agencies remains the Association’s top concern. The Association urges
    the CFSAC to forward these recommendations with its strong endorsement to
    Secretary of Health Sebelius and to actively pursue a deeper and more
    effective engagement with top officials in the department to ensure their
    swift adoption and enactment.

    The Association commends Dr. Wanda Jones, her team and the NIH for making
    this meeting accessible by videocast and likewise appreciates the CDC’s
    engagement of stakeholders by audioconference at its April 27 public
    meeting. We encourage all efforts to expand access to these types of
    proceedings and to enable participation by those whose lives have been most
    deeply affected by CFS. Thank you for the opportunity to submit these

    K. Kimberly McCleary
    President & CEO
    The CFIDS Association of America
    May 22, 2009
  15. QuayMan

    QuayMan Member


    CDC CFS Research Program: Input on Strategic Research Plan

    submitted by Jill McLaughlin

    May 27, 2009

    Discontinue the use of the new "emperical" definition and
    rebranding CFS as a “stress-related disorder.” This
    definition is too non-specific, reduced to questionnaires based
    on a Wichita 2-day hospital stay, and excludes the most
    serious patients and includes patients who mainly
    have depression.

    Adopt the Canadian Myalgic Encephalomyelitis/ Chronic Fatigue
    Syndrome: Clinical Working Case Definition, Diagnostic and
    Treatment Protocols. A DePaul study ( "Comparing the Fukuda
    et al. Criteria and the Canadian Case Definition for Chronic
    Fatigue Syndrome") found that the Canadian criteria group, in
    contrast to the CFS Fukuda group, had more variables that
    statistically significantly differentiated them from the psychiatric
    comparison group. The Canadian criteria selected cases with
    less psychiatric co-morbidity, more physical functional impairment,
    and more fatigue/weakness, neuropsychiatric, and neurological

    Recognize and focus research direction on known abnormalities of
    reduction in grey matter of the brain, mitochondrial abnormalities,
    channelopathies and aberrant ion transport, low natural killer cell
    cytotoxicity, cytokine shift from Th1 to Th2, sympathetic nervous
    system hyperactivity, cortisol deficiency, left ventricular dysfunction
    in the heart and other cardiovascular abnormalities that can have
    serious clinical implications. A variety of theories have been proposed
    to explain these findings and offer insight into the pathophysiology,
    including infectious agents, viruses, bacteria, tick borne infections,
    immune dysregulation, neuroendocrine problems, as well as
    neurologic abnormalities, oxidative stress and kindling.
    We need clinical and laboratory-based studies of homogeneous
    groups of patients to produce meaningful data that can be replicated
    and used to provide insight into the nature and pathophysiology,
    not questionnaires about fatigue and “unwellness."

    Expand the CDC CFS research program. One person should not
    have full control of any research program or budget. Then fund and
    award contracts and grants to outside investigators who have
    proven abilities and accomplishments in targeted areas.

    Expand the genetic research beyond narrow focus of stress related
    genes and HPA axis abnormalities. Genomics and proteomics have
    proven to be useful in the detection of diseases and development of
    therapeutic modalities. Use genomic and proteomic tools that are
    available for the diagnosis of infectious diseases.

    Extend investigations and collaboration with others in the field doing
    similar work and share data.

    Remove references and links to the thoroughly flawed and discredited
    NICE (UK NHS National Institute for Health and Clinical Excellence)
    guidelines for diagnosis and management. These guidelines do not
    follow the neurological WHO classification and promote CBT and GET
    (graded exercise therapy), which has been shown to make patients
    worse. Pacing involves the conservation of energy, not expending
    more to force recovery.

    Discontinue the "Awareness" campaign PR Marketing strategy. Millions of
    dollars have been wasted that could have been put toward research
    and provider education, which is much more important than having
    photo exhibits at Malls. PR and Marketing are no substitute for science
    and research. Establish broader consideration of the awarding of
    contracts and collaborations and have measurable outcomes
    by which progress can be evaluated. Have content of all material
    developed and approved by a wide range of experts, not exclusively
    by CDC or under the control of one organization. Establish transparency
    of the use of funds and keep track of and report on progress of all
    contracts through benchmarks and outcomes, which are made public.
    Too much money and time have been wasted on superficial, ill-conceived,
    non-productive endeavors that have had little effect.

    The International Association for Chronic Fatigue Syndrome/Myalgic
    Encephalomyelitis (IACFS/ME) has developed a case definition for
    Pediatric ME/CFS. The existing case definitions have been developed
    for adults and may not be appropriate for children. The IACFS/ME
    convened a working group of experts who determined that there
    is sufficient evidence to put forward a case definition for children
    and adolescents. Having a consistent and reliable case definition
    is of utmost importance to properly diagnose and classify patients
    for research in order to determine the pathophysiology, identify
    biomarkers and develop effective treatments.

    The CDC should recognize the IACFS/ME Pediatric Case
    Definition and use it as the basis to develop a research program
    on pediatric ME/CFS with focus on determining the cause, risk
    factors, biomarkers and effective treatments. Since children
    with ME/CFS can become adults with the illness over time,
    the natural history must also be considered.

    Jill McLaughlin
  16. skeptik2

    skeptik2 Member

    Can we keep this at the top, plz?

    It is a great education tool for all of us, especially the newly diagnosed, if they will read it.

  17. skeptik2

    skeptik2 Member

    It took me to page 4 to find this thread!

    Could you add "TESTIMONY to" ....the CFSAC Meeting May 27th and 28th title?

    LOL, I think Mezombie and I keep helping your thread stay at the top by asking you to make your titles more provocative and pertinent...please forgive us.

    Love all your hard work, I am very grateful to you.

  18. Khalyal

    Khalyal New Member

    Alternately, you can go to, click blogs, then click editor's blog.

    I was able to catch a small portion of the CFSAC meeting on May 27. Most interestingly, I was able to hear Dr. Reeves’ presentation in full, and the follow-up testimony of several CFS advocates/sufferers. Following is what I heard of Reeves' presentation, with actual quotes in “quotation marks“, and my own asides, thoughts and comments in (parentheses).

    Dr. Reeves’ presentation lasted approximately 40 minutes. He started out by saying he would give us an update on the results of the peer review and moving forward. He said that he would discuss the draft of the 5 year strategic plan, calling it a “complex topic”. He said he would explain the current CFS program, discuss the logic model that’s in the handout, go through the current version of the draft, putting it into context with the peer review and stakeholders meeting, and the recommendations that this committee has made.

    (The first important thing to note is in regards to the external peer review panel. The CFS Advisory Committee recommended the peer review idea, and actually recommended some potential members. The CDC chose 5 members, one of whom is Peter White, a U.K. psychiatrist. This is important, because the UK has formed its national health plan response to CFS based on the work of Simon Wessely, Peter White, et al., who have totally psychologized the disease. If you have watched Reeves over the years, you can see that he has steadily been steering the U.S. response to CFS in the same direction - It’s All In Your Head.)

    Dr. Reeves said the the “program objective is to devise control and prevention strategies, and improve the quality of life of sufferers. We are not NIH, we are a complementary agency.”

    He went on to say that the control strategy model is rather simple - that there is the population of the world, and in that population some have CFS. Among those who have CFS, there is more than one subtype. “We need to get these people to interventions. Their illnesses need to be evaluated and managed. We must take subtypes into account. We must decrease the burden CFS poses on the population, decrease impairment, and decrease economic impact.”

    He said that the CDC needs to address the barriers to access to healthcare. But on the other hand, patients actually have to utilize that healthcare. Thirdly, patients have to receive appropriate care.

    “What do we think CFS is?” Dr. Reeves asked. “It’s a complex illness, with alterations in complex homeostatic systems. It’s not the result of a single mutation or a single environmental factor. It comes from a combination of many factors: genetics, gender, stressors, immune stressors all interact.”

    Reeves then showed a slide with a diagram. He said, “This is our current model. You see the brain in the middle. Around the brain, stress is involved, traumatic childhood stressors, allostatic load maladaptation to stressors, genes interact with one’s reaction to stress, autonomic nervous system, orthostatic intolerance, immune activation..”

    He went on to say that all of these things go in both directions (meaning that these things contribute to causing CFS, but CFS contributes to all of these things.) He then mentioned that acute and latent infections that may reactivate with various stressors, and that diet and lifestyle are important, again in both directions.

    (Notice that the very first things he mentions in his model are childhood trauma and allostatic stress loads. In other words, we do not know how to handle stress. The third thing he mentions is genetics, but notice how he ties genetics to stress - not to susceptibility to a disease. This is all leading up to psychosomatizing the disease completely, a path he has been on for many years. But wait…there‘s more…)

    Dr. Reeves moved on to discuss the CDC’s CFS research strategy.

    He said that population studies “let us look at risk factors, the clinical course of illness, to be able to tease out subtypes. We measure biomarkers in our population studies, as well as knowledge, attitudes, and beliefs.”

    (This leads us straight to the “improper sickness behavior” component of the “allostatic stress load” theory.)

    He said that the goals are the same in clinical studies. As far as laboratory studies go, he said that “nothing we do doesn’t have a lab component.”

    Dr. Reeves said that the goal of education activities is that “we have to change attitudes, knowledge, beliefs, and treatment patterns.”

    Next, Dr. Reeves wanted to discuss the Logic Model that his team has developed. He said that the reason for a logic model is that it ‘allows you to put strategy and tactics into perspective, outline goal and measure success.”

    In the logic model, there are inputs, outputs, and outcomes. He discussed them as follows:
    Outcomes: “We want to reduce population morbidity and improve quality of life for patients.”

    Inputs: “These are activities, what we actually do. It is not a trivial illness. Congress realizes and appropriates money to study it. Advocates, academia and pharma, these are people we can partner with to do it.”

    Outputs: “Knowing the burden of the disease, knowing the “knowledge attitudes and beliefs” of sick people, their families, physicians, ets., education, the cfs website…”

    “The only outputs we really haven't gotten to yet is therapeutic targets.”

    Dr. Reeves went on to discuss CFS publications. He said that there are 136 peer review publications, 4 manuscripts in press, 10 manuscripts in review. “This is how science is done“, says he. “Who reads them and who have they influenced?” he asked. He said that there are about 3000 or so publications on Pubmed on CFS. About 1600 in other journals reviewed by ISI. He noted that the “only group that has more in the world is the United Kingdom.”

    Dr. Reeves then moved on to the Case Definition.
    He said that the newly defined illness was first defined in 1988 (Holmes)
    It was then redefined in 1994, and this definition is currently the international standard. (Fukuda).
    He says this is the reference standard, but has it problems. Because of that, he says, an international group worked toward streamlining this in 2000, and it took 3 years to streamline the 1994 definition into an operational guideline. (This is how we got what is being referred to as the “Reeves empirical”, which basically eliminates all of the very sickest of us, and the original Incline Village cohort….and yet includes people with mood disorders only.)

    Reeves said that the revision recommends standardized instrumentation to measure frequency, occurrence, and duration of symptoms. (Doctors are having a hard time actually obtaining these instruments, or at least, Dr. Bell is, as he complained to the CDC).

    Dr. Reeves then stated that provider knowledge, attitude, and belief is higher than 10 years ago.

    Dr. Reeves moved on briefly to the peer review executive summary. He said that the CDC is using their comments to frame the program, but that the bottom line was that the peers liked the current program and had endorsed the 5 year strategy.

    He did make a comment on the criticism of the 2005 publication of operationalizing the 1994 Fukuda definition of CFS. His comment was that the CDC leads the world in defining this illness, and that it was not an attempt to rewrite the 1994 Fukuda, just an attempt to operationalize it.

    Clinical guidelines was the next topic.

    Dr. Reeves said that the biggest flaw in studies is that in cross-sectional studies, patients have only been sick 5 years. He said that the CDC was developing collaboration with the Mayo Clinic to use Rochester epidemiology, because local people use the Mayo Clinic from birth to death. That would give complete birth to death medical records on CFS patients, so that researchers could look back to see what happened to some of these people as kids, what kind of traumas they may have had, and what happens to the clinical course when they get it and go on. (Again the emphasis on the inability to process trauma).

    Dr. Reeves then brought up the April stakeholder meeting - he said that “I’m not trying to be funny, but the response was very impressive, given problems with travel/economy/illness.”

    He noted that 8 people testified in person, and 30-something testified by phone. He said that leading up to that meeting and subsequently, up until the present day, he had received around 350 or so emailed or written comments, many from some of the same people who testified. He said that this does make it move difficult to say that 90 percent of stakeholders feel this way or that way, because it’s all one person, basically.

    He said that some of the issues that the stakeholders brought up were that:
    Communications with the CDC had not been optimal
    The case definition was a high concern
    Pathology, biomarkers and sub typing, infectious agents, needed to be researched
    Management and treatment of the disease needed to be addressed
    Collaboration and data sharing needed vast improvement.

    Reeves noted that these were the same types of comments that have been raised by the CFSAC, physicians, etc., so fair representation of concerns were addressed.

    Next, Reeves moved on to the topic of “moderators”, or things outside of what one can control, whether they be good or bad. First he mentioned some “good moderators”:
    He said that funding had been quite available to the CFS research program.
    He said that credibility is increasing, making research easier.
    He said that from 1992 to 1999, funding was only 3 to 4 million per year, so they only focused on a few things, but that from 2000 to 2005, due to payback funding, “we were able to do the Wichita study, collaborate with the CFIDS Association of America, do a pilot national survey, funded one of the best post-infectious disease studies, and cytokine studies”. He went on.

    He said that now that payback is over, funding is decreased again.

    The CDC has been doing a cross sectional study in Georgia, and have been following the CFS population there. There were a series of workshops, he said, from 2000 to 2002, studies that show that the CFS construct is real, internationally. Across the board, he says, in every country, the CFS construct is “Fatigue plus 8 magic symptoms, so the empiric underpinning is good”.

    Then Reeves talked about “hindering moderators” or, as he put it, “what can one do with what one has. Economics is a problem for everyone”. He said that from 2000 to 2005, during payback, the budget averaged at about 7 million a year, but now we are back to abut 3 to 4 million a year. He said that this represents a real 50 percent decrease, but then you have to factor in inflation.

    Also, he noted, “we need to get more involved in more collaborations, working with others. Not just giving them money. We need to work together toward common goals with pharma, academia…” (I read this as, we want our hand in all research being done by anyone so we can control it)

    Dr. Reeves then discussed the CDC’s Vision:
    He said that he believed that the CDC had successfully focused on obtaining baseline information. So in moving forward, the strategy is to focus on 4 goals:
    (This is the 5 year plan)

    1. Refine understanding of etiologic pathways to improve diagnosis and identify therapeutic targets. Reeves said that “Psychosocial, clinical and biological markers must be identified.” (note that the first thing is psychosocial) He also noted that we must identify risk factors, and used major depression disorder as “an extremely good example of this,another complex illness with subsets.”

    2. Improve clinical management of CFS patients by providing evidence-based education materials that address evaluation and clinical management of CFS

    3. Clinical intervention trials

    4. Move CFS into the mainstream of public health concerns.

    (I had to take a break and missed a little bit)

    Finally, Dr. Reeves discussed upcoming activities, including an international workshop on clinical management. He noted that the “UK already has this integrated into their healthcare system”. (You bet they, do right in the psychiatric sector, with CBT and GET as the therapies)

    Reeves then mentioned that there is a CBT/GET trial in the process of being planned in Macon with the collaboration of the “UK group and the Mayo Clinic”. (That is scary. As Mary Schweitzer points out in subsequent testimony, Peter White, proponent of CBT/GET and representative of the UK group, has stated that CFS is caused by too much rest, leading to debilitation, and that no medical treatment is necessary or appropriate: the only treatments should be Cognitive Behavior Therapy and Graded Exercise Therapy)

    ~Khaly Castle[This Message was Edited on 05/28/2009]
    [This Message was Edited on 05/28/2009]
    [This Message was Edited on 05/28/2009]
  19. QuayMan

    QuayMan Member

    Thanks Khalyal - that was brilliant.

    Can this be re-posted?

    I wonder who suggested Peter White? I heard before that some group, think it might have been the IACFS/ME, were asked to make suggestions for the external review.

    Personally I think suggesting Peter White was a bad idea. I sometimes hear people say that we should not bad-mouth individuals. But I think this might have been an example of when if Peter White had been bad-mouthed as much as Simon Wessely, they might not have put him forward. Peter White gets too easy a ride in the US for my mind - he gave a very annoying presentation at the HHV6 seminar last year and nobody challenged him. A few years ago, the CAA did a report on the state of the science and they included a picture of him. People in the US need to learn that he's trouble.
  20. Khalyal

    Khalyal New Member

    Please, by all means, repost this wherever you see fit. I'd like it if you could include the url I put at the top of the page.

    I'm pretty sure White would be Dr. Reeves' pick. Reeves has been working with him for years....

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