(US) Let's try to make sure the CFSAC recommendations are acted on

Discussion in 'Fibromyalgia Main Forum' started by QuayMan, Dec 6, 2009.

  1. QuayMan

    QuayMan Member

    (From Co-Cure)

    (Please re-post)

    I don't think this has been highlighted here so I thought I'd do it.

    People need to do what they can to make sure the CFSAC recommendations are
    highlighted and preferably acted on, as much as possible. As people will
    recall, I feel strongly about recommendation #3 (which is also mentioned in
    recommendation #4).

    Tom

    =======================================================

    From the December edition of the CFIDS Association of America's CFIDSLink
    e-newsletter:

    -----

    Write to Secretary of Health Kathleen Sebelius and elected officials to
    request action http://www.capwiz.com/cfids/home/ on the CFS Advisory
    Committee's latest set of recommendations and the urgency of expanded
    research. We've made it easy for you with letter templates at our Grassroots
    Action Center.

    -----

    [TK: I've copied below the intro bit. There is then a sample letter (which
    I haven't copied in) that can be edited]


    ----
    http://www.capwiz.com/cfids/issues/alert/?alertid=13463086&type=CU

    Write to Secretary of Health Sebelius

    Ask her to implement the CFSAC's recommendations


    Kathleen Sebelius is the Secretary of Health and Human Services. She is
    responsible for all the agencies of the Department of Health & Human
    Services (DHHS), including the National Institutes of Health (NIH) and U.S.
    Centers for Disease Control & Prevention (CDC). On October 29-30, the
    federal CFS Advisory Committee met and passed a set of four recommendations,
    copied below. Please use our form letter to support swift implementation of
    these recommendations by Secretary Sebelius.

    Recommendations from the CFS Advisory Committee
    to the Secretary of Health & Human Services October 30, 2009

    Recommendation 1:
    The CFSAC renews its recommendation to the Secretary to establish Centers of
    Excellence for CFS that would effectively utilize state of the art knowledge
    concerning the diagnosis, clinical management, treatment and clinical
    research.

    Recommendation 2:
    The CFSAC renews its recommendation to the Secretary, as submitted 6 months
    ago, to establish progressive leadership at the CDC. It is disappointed that
    no response has been made to the earlier recommendation and it is interested
    in getting feedback, especially in light of the comments made to the New
    York Times by Dr. Reeves that reflect an inappropriate bias and undermine
    others' CFS research.

    Recommendation 3:
    The CFSAC objects to CDC's continued use of the inadequate and inappropriate
    2005 "empiric" research definition for CFS. It recommends that CDC abandon
    the empiric case definition and the fundamentally incorrect
    conceptualization of chronic unwellness as being equivalent to CFS
    incorrect.

    Recommendation 4:
    The CFSAC has significant concerns about the CDC's five-year plan. In
    particular, the priorities articulated in its recommendation of May 2009
    have not been adequately captured in the latest draft. The CFSAC renews its
    recommendation that CDC prioritize: identification of biomarkers and (viral)
    etiology of CFS; partnership with organizations representing CFS scientific
    expertise to create guidelines for adult and pediatric management; provide
    web based guidelines for CFS management given our current state of knowledge
    and expert opinion; and provide comprehensive information about CFS in
    partnership with CFS experts to the scientific community, medical and mental
    health providers, educational institutions and the public for both adult and
    pediatric CFS through DHHS resources. CDC's continued use of the inadequate
    and inappropriate 2005 "empiric" research definition for CFS. It recommends
    that CDC abandon the empiric case definition and the fundamentally incorrect
    conceptualization of chronic unwellness as being equivalent to CFS
    incorrect.
    ---------

    December edition of CFIDSLink:
    http://www.cfids.org/archives/2006-2010-cfidslink/december-2009.asp
  2. AuntTammie

    AuntTammie New Member

  3. QuayMan

    QuayMan Member

    Hi aussiewoman,

    It is good the CFSAC made those recommendations.

    But they're still only on paper. They are useful to refer to but, for example, the CDC may continue to use the empiric/Reeves' definition.

    So we still need people from the US/eligible to vote in the US elections to write to politicians and/or officials using the link in the first message.
  4. QuayMan

    QuayMan Member

  5. QuayMan

    QuayMan Member

  6. QuayMan

    QuayMan Member

  7. QuayMan

    QuayMan Member

  8. QuayMan

    QuayMan Member

  9. QuayMan

    QuayMan Member

  10. SpecialK82

    SpecialK82 New Member

    Does anyone know how (when) we would know if Kathleen Sebelius agrees with these recommendations?

    At the last CFSAC meeting in Oct, it seemed there was frustration that there was no reasons given in the past as to why the recommendations were not implemented.

    Is it possible that we just won't hear anything? How does this work? At what point do we conclude that the recommendations won't be implemented??

    Thanks,
    Kristina
  11. SpecialK82

    SpecialK82 New Member

  12. QuayMan

    QuayMan Member

    I don't know but here's some speculation/waffle/whatever:
    I think if they did act on recommendations #2-4, that they might not explicity say it in public that it was because of the recommendations. But that wouldn't mean pressure couldn't be put in other ways. E-mails/messages from the HHS or whoever to the CDC on the issue. I'm not in the US so can't use the CAA site but often E-mails go to more than one person - so don't know in this case if you have the option of writing to others?[This Message was Edited on 01/02/2010]
  13. QuayMan

    QuayMan Member

    Write to Secretary of Health Kathleen Sebelius and elected officials to request action
    on the CFS Advisory Committee's latest set of recommendations and the urgency of expanded research. We've made it easy for you with letter templates at our Grassroots Action Center.
  14. fight4acure

    fight4acure Member

    Jezzz, I feel like I'm new here when I don't know what certain initials stand for. Well, here comes an embarrassing question... what does CFSAC stand for. I got the CFS part, but not the AC.

    Love,
    Fight :)
  15. QuayMan

    QuayMan Member

    It's good you asked, fight4acure. If you don't know, other people might not know otherwise but might be too embarrassed to ask.

    CFSAC = CFS Advisory Committee

    It's website is: http://www.hhs.gov/advcomcfs/

    To be honest, I don't think it had that big a profile until 2009. Then in 2009, it started showing it's meetings by video link online. The first one was in May.
    But the one that was watched by a lot more people was the October one. That was where we saw Dr. Peterson and Annette Whittemore talk about XMRV and the WPI. Also we heard Dr. Coffin talk about the excitement in the retrovirus researchers' community with regard to XMRV. Lots of people also testified in person or on the phone.
  16. denis321

    denis321 New Member

    This depends on how people are health-wise but I would suggest people CALL their Congresssional reps besides writing a letter and the best method might be to actually VISIT your rep's office - the personal touch always helps.

    (Local rep's office can schedule appointments for you to meet at least with rep's assistants.)
  17. fight4acure

    fight4acure Member

    Thanks! I've been gone for a year, minus the last few weeks, so that's probably why I did not know.

    I'm glad they have this committee!

    Thanks for the info, and I shall check out the site!

    Love,
    Fight :)
  18. QuayMan

    QuayMan Member

  19. QuayMan

    QuayMan Member