The CDC CFS program and Peter White

Discussion in 'Fibromyalgia Main Forum' started by QuayMan, Oct 4, 2009.

  1. QuayMan

    QuayMan Member

    (From Co-Cure)

    Subject: The CDC should cut its ties with Peter White as he was an external reviewer (according to their own guidelines) (it would appear)

    At the May 2008 meeting of the CFSAC, the following information was given:

    CDC External Peer Review of CFS Program

    "CDC plans to conduct an external peer-review of the CFS program in late
    summer/early fall 2008. This review will be conducted by a panel composed of national and
    international experts that is to include representatives from the Coordinating Center for
    Infectious Diseases Board of Scientific Counselors and CFSAC. CDC is requesting that
    CFSAC members recommend names of experts with no conflict of interest (direct
    funding from CDC)"


    Dr. Miller:


    "The panel will be external experts in the field who have no conflict of interest-they are not
    receiving CDC funding and ***would not have a direct impact on the program in its development in stages other than the recommendations.***"

    At the May 2008 meeting, people also heard that:

    Bill Reeves:
    "We talk to Dr. White fairly regularly."

    One of the recommendations of the 4-man external review group (which
    included Prof. White) was:

    "The panelists recommend that the CDC program urgently consider intervention
    studies to help to elucidate the direction of causality in the several
    pathophysiologies identified by the CDC. This strategy was not articulated
    clearly. For example, since both cognitive behavior therapy and graded
    exercise therapies are known to address some of the abnormalities found, and
    since both these therapies have been shown to be efficacious for CFS, these
    behavioral interventions should be seriously considered. Collaborations with
    providers and medical schools practised in randomised controlled trials
    might provide the best means to achieve this."

    A summary of strategic recommendations


    5. Clinical guidelines on management should be developed for use in the USA,
    by the CDC team in collaboration with others, and disseminated for CFS.

    6. The team needs to consider studies that test the direction of causality
    of pathophysiology, such as using interventions."


    At the May 2009 CFSAC meeting, we heard (I included these in another E-mail
    the other day):

    - "CBT GET. We are in the process of planning a cognitive behavioral therapy
    (CBT) and graded exercise (GET) trial as part of the provider registry
    population in Macon. We're going to do that in collaboration with the
    providers in Macon, with Mercer Medical School, ***with the U.K. group***, and with Mayo
    Clinic. Obviously, CBT GET is not the cure for everybody. Nobody knows for
    how many it is. It probably applies to a subset."

    - ""International Workshop - Research, Clinical, and Pediatric Definitions
    of CFS - I would like to try to get together by the winter of 2009. I know the
    IACFS/ME is interested in this. We want to include countries such as UK that have CFS
    care completely integrated into their healthcare system."

    - "Dr. Reeves: An excellent comment. Our focus is obviously on the United
    States. There are three important reasons for international collaboration. One of
    them I alluded to. There are countries that have put CFS evaluation, diagnosis, and
    management into their national health systems. The UK is one of those. An international
    meeting provides the chance to learn from another government that has embraced this
    illness- perhaps not to the extent that everybody would like-but is trying
    to work with it as a national health service."

    - "Peter White, the psychiatrist that we work with at Emory, does not look
    upon CFS as a psychiatric illness. What they are extremely interested in at Emory are the
    neurologic and brain pathways that mediate this. That is one of the things that Peter
    White really added to the peer review-he is an expert on autonomic nervous system
    function. The fact that certain investigators have a reputation in a certain component of
    the community for thinking that CFS is all in the patient's head is a result of
    the CDC's problems with communication."

    - "Dr Bill Reeves: "The collaboration with Peter White is largely because
    Peter White came to us when the national health service in the UK was trying to
    design its program and formulate recommendations about what the health service in the UK should do. We've consulted with them as far as our ideas and our expertise, and we
    collaborate with Dr. White on the PACE trial. He's an unusually intelligent individual-you've
    read some of his comments on some of our articles-whom we enjoy sparring with. He is an
    expert on autonomic nervous system function and he's highly instrumental in
    all of the hurdles, both with patients with the government and with physicians, in
    trying to put together, given the current state of knowledge, a national program."


    So, according to Dr Miller, the panel will be external experts in the field
    who have no conflict of interest-they are not receiving CDC funding and ***would not have a direct impact on the program in its development in stages other than the recommendations.***

    Does Peter White qualify?

    - Bill Reeves talks to him fairly regularly (his own words) so Peter White
    may be involved in the "development of the program"

    - The 4-man panel of which Peter White was a member recommended management
    and treatment guidelines - should that not mean he should be excluded from
    the panel drawing up these guidelines?

    - The external review recommended that the CDC study CBT and GET. Judging
    from the quote above and the information at:, the CDC appear to be talking
    about doing a CBT/GET trial "with the UK group" following on from Peter
    White et al's recommendations - is this Peter White's group? My guess is
    that it is

    - Peter White is involved in the Emory studies (according to the quote from
    Bill Reeves above).

    It would seem like the right thing to do so that nobody's reputation (i.e.
    the CDC or Peter White) is damaged is for the CDC and Peter White to cut
    their ties.

    Tom Kindlon
  2. AuntTammie

    AuntTammie New Member

  3. QuayMan

    QuayMan Member

    Somebody posted this as a reply on another forum:

    What is Chronic Fatigue Syndrome & what is ME?


    Professor Peter White, Barts & the London School of Medicine
    View Online Webcast
  4. QuayMan

    QuayMan Member

    This person added (on the video) (he said other annoying things as well of course):

    He discouraged Doctors from using ICD 10 codes to diagnose CFS and he said
    that Chronic fatigue F48 'neurasthenia' is a diagnostic code for CFS to!

    At the end he says if you tell patients they have ME they wont get better
    but if Doctors them they have CFS then they get better?!

    I see that Peter White has just taken part in a study with William C Reeves
    on the Georgia CFS cohort:


    Replication of an empirical approach to delineate the heterogeneity of
    chronic unexplained fatigue

    Eric Aslakson , Ute Vollmer-Conna , William C Reeves and Peter D White

    Population Health Metrics 2009, 7:17doi:10.1186/1478-7954-7-17

    Published: 5 October 2009
  5. Spinetti

    Spinetti New Member

    Let's see. Peter White serves on an "External Review" of the CDC's CFS program, gives it favorable marks, and then goes on to co-author a paper with the head of the program.

    The paper, based on the psychiatric concept of "endophenotypes," concludes, "The data do not support the current perception that CFS represents a unique homogeneous disease and suggests broader criteria may be more explanatory."

    If anyone can explain the value of this study, aside from pushing a psychiatric agenda for CFS, I'd be interested.
  6. Spinetti

    Spinetti New Member

  7. QuayMan

    QuayMan Member