IACFS/ME Statement to the HHS CFSAC - Recommendations for CDC's Five Year

Discussion in 'Fibromyalgia Main Forum' started by mclaughlinjill, May 28, 2009.

  1. mclaughlinjill

    mclaughlinjill New Member

    The following is the statement that was presented by Dr. Friedberg (new
    President of the IACFS/ME) to the HHS Chronic Fatigue Syndrome Advisory
    Committee (CFSAC) on behalf of the organization.

    Jill McLaughlin


    To: Chronic Fatigue Syndrome Advisory Committee

    From: Fred Friedberg, PhD
    International Association for CFS/ME

    Date: May 28, 2009

    Re: International Association for CFS/ME’s Recommendations for the CDC’s Five
    Year Strategic Plan for CFS Research

    As president of IACFS/ME, I would like to thank the CFSAC for this opportunity
    to comment on the CDC’s 5 year strategic plan for CFS research. The new director
    at CDC has the opportunity to reinvigorate CFS research, as well as reinstate
    CFS as a public health priority, as emphasized by Dr. Julie Gerberding at the
    November 2006 launch of the CDC’s CFS public awareness campaign.

    Unfortunately, the CDC’s draft five year strategic research plan lacks
    sufficient substance and detail. As such, the IACFS/ME is unable to directly
    respond to or endorse this plan. Rather, we suggest a single critical change in
    the CDC program:

    That change is to make CFS a public health priority.

    The IACFS/ME requests that the CDC declare CFS a public health priority. To
    achieve this goal, the CFS community needs strong and visionary new leadership
    from the CDC, the recognized world public health authority, to remove the
    enduring stigma associated with being a patient. This stigma and skepticism
    about the illness is also a deterrent to those professionals who would consider
    entering the field of CFS as researchers or clinicians.

    CDC’s own epidemiologic studies have identified more than a million CFS
    sufferers in the U.S. with as many as 85% still undiagnosed. Further, the CDC
    has indicated that CFS is a debilitating illness with an annual economic impact
    of at least $9.1 billion.

    Yet, CDC sponsors no prevention or clinical treatment research. This is a major
    concern given these 3 points:

    (1) the large number of severely ill and undiagnosed patients,

    (2) the inadequacy of current subjective diagnostic criteria for CFS, and

    (3) the absence of effective, evidence-based treatment options.

    We have put together 8 recommendations that CDC can enact to make CFS a public
    health priority:

    1. The CDC needs to identify a CFS program leader who is a progressive,
    open-minded, and dynamic manager with a sense of urgency commensurate with the
    pressing needs of the CFS community.

    2. The CDC should undertake high profile public and professional awareness
    campaigns to fully legitimize the illness of CFS and reduce its stigma.

    3. The CDC should support extramural research into the pathophysiology of CFS in
    order to achieve the critical goals of objective diagnosis and effective
    treatment. Such efforts should eventuate in the identification of biomarkers
    that will justify:
    a. a new objective case definition; and
    b. the relabeling of CFS with a more appropriate and credible name.

    4. In the spirit of public resource sharing, the CDC should make available
    research study protocols and the epidemiologic, clinical and laboratory data
    from all studies conducted by the CDC’s CFS research program since 1984.

    5. The CDC should abandon its use of the empirical case definition for CFS
    (http://www.pophealthmetrics.com/content/5/1/5) and make a public statement in
    this regard. The empirical case definition has been highly criticized by expert
    CFS epidemiologists because it is overly broad and based on subjectively
    determined criteria (http://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinition

    6. The CDC should take a pro-active leadership position by exploring its
    potential role in developing an international clinical trials network in
    collaboration with clinicians, private industry and university-based

    7. The CDC should partner with the IACFS/ME, the only national and international
    professional organization representing investigators and clinicians to develop
    evidence-based diagnostic and treatment guidelines for the management of CFS.

    8. The CDC should work towards the implementation of the CFSAC recommendations

    We thank the CFSAC for this opportunity to comment on the CDC’s five year
    strategic plan. Both the CDC and IACFS should work together to achieve our
    mutual goals of establishing new evidence-based research programs, improving
    clinical care, and offering comprehensive healthcare provider education. Our
    ultimate objectives are (a) to eliminate the suffering caused by CFS and (b) to
    work toward the eradication of this serious illness.

  2. Forebearance

    Forebearance Member

    Thanks for posting this, Jill!

    I thought Dr. Friedberg was an amazing speaker at the CFSAC meeting.
    He is so strongly on the side of us patients!!!
    And he can put his whole professional weight behind his statement, which we patients can't do.
    And thank you!!!!!

  3. skeptik2

    skeptik2 Member

    I've always admired your work, it's so compelling and thorough. Have followed it from waaaaay back!
    LOL, tells my age!

    Could someone post Dr. Friedman's address? I'd like to thank him for his support.

    Hugs, Jill..
  4. QuayMan

    QuayMan Member

    Good idea, skeptik2.

    Here it is: Fred.Friedberg@stonybrook.edu (from a paper published earlier in 2009).
  5. simpsons

    simpsons Member

    Thank you for posting this.

    This is not over yet. lets keep the pressure on make sure that these recommendations get actioned, and dare to dream.

  6. cfsgeorge

    cfsgeorge New Member

    Dr. Fred Friedberg is such a good man. You can see he is truly sympathetic to our cause by trying to push through the right policies. Can the same be said of Dr. Reeves?
  7. AuntTammie

    AuntTammie New Member

    Dr Friedberg is awesome - I am definitely writing to thank him....now let's hope and pray that this actually makes a difference!
  8. LindaJones

    LindaJones New Member

    thanks for posting
  9. skeptik2

    skeptik2 Member

    All I know is 11 p.m. Florida time, station 101.5 FM.

    He was interviewed on the 26th, before the CFSAC conference.

    Should be interesting.

  10. AuntTammie

    AuntTammie New Member

    I like your idea about the Ad council....I think that convincing them might be more effective if someone were to start another petition or something along those lines and leave it open for other comments to be added....something cohesive and organized, rather than a bunch of separate requests....and you're rt - pointing out that children as well as adults are being effected would be good
  11. AuntTammie

    AuntTammie New Member

    I did send him an email thanking him for his presentation, and he wrote back rt away thanking me for my support.....I think that the more people who thank him, the better - not just to acknowledge our appreciation (although that is certainly good), but also just to encourage him to continue to fight for us, and to let him know that we agree with what he had to say and is doing
  12. QuayMan

    QuayMan Member

    That's Ken Friedman PhD who is different to Fred Friedberg PhD.
  13. skeptik2

    skeptik2 Member

    Of course he's different! HA! Brothers, maybe?

    The radio show, I forgot to mention, was about CFS and FM, so of course my brain mixed the two up.

    Thanks for the heads' up!

  14. QuayMan

    QuayMan Member

    Not sure whether you're being serious, skeptik2, but there's something about their names that makes me think they're not brothers!
  15. simpsons

    simpsons Member

  16. simpsons

    simpsons Member

    i will write first thing 2morrow and thank him. how lucky we are to have such briliant people on our side
  17. Rafiki

    Rafiki New Member

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