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Preparation for federal US CFSAC May meeting

Discussion in 'Action Alerts and Advocacy' started by Hope123, Mar 22, 2010.

  1. Hope123

    Hope123 Senior Member

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    Federal US CFSAC meeting just announced - MAY 10!

    As many of you know, the US federal CFS advisory committe meeting takes place twice a year - usually in May and either October or November. The next meeting has not been scheduled yet [NOW SCHEDULED FOR MAY 10] but I thought I'd start a thread to get people thinking about it, specifically what questions/ issues we have that have not been addressed well and also which gov't departments or officials we want to hear from.

    Also, it might be interesting to ask before the meeting whether international advocates can be counted in this time as the last meeting did not allow participation internationally although many around the world depend on US CFS research also. Note that CFSAC is now broadcasted live (and archived) online and people can write to or sign up to speak in-person or on the phone during the CFSAC meeting.

    If we get some good ideas beforehand, it might be worth it to send it to Dr. Wanda Jones, who helps run the meeting, or members of the CFSAC committee.

    Here is the CFSAC site for more info.

    http://www.hhs.gov/advcomcfs/
  2. starryeyes

    starryeyes Senior Member

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    Great idea Hope! I'll be thinking about this and checking back here too.
  3. Otis

    Otis Señor Mumbler

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    Funny you should say that

    I just posted the following on another thread "I think we need to find a way to spin up Wanda Jones - I would not want to get in her way if she were on a mission."

    Otis
  4. Hope123

    Hope123 Senior Member

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  5. shrewsbury

    shrewsbury member

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    I think that's a great idea Hope. And do like that you're planning ahead. You're helping combat my internal malaise. I sort of feel, and I may be reflective of many out there, that we did a big push for October - what more is there to do.

    But of course there is lots to do. We need to get everyone going again. As well as inviting Dr Frieden, should we invite Dr Unger and ask for her position, and what she has done/is doing to help get the the CFSAC recommendations implemented?

    Another idea - in Oct Wanda Jones said she had a list of all past recommendations and what actions have been taken to date. It would be great to have access to that document to help with planning.

    Here are the recommendations from Oct:

    Committee RecommendationsOctober 29-30, 2009

    CFSAC voted upon and agreed for the following recommendations to be
    forwarded to the Assistant Secretary and the Secretary for Health :

    The specific recommendations articulated by the Committee are:

    1.

    Establish Regional Centers funded by DHHS for clinical care, research,
    and education on CFS. (Resubmitted from May 2009)
    2.

    AHRQ is expected to complete a review of CFS for the NIH State of the
    Knowledge Workshop. After this process, we recommend that the findings be
    communicated immediately to key medical education, accreditation, licensing,
    specialty, and certification boards and organizations. In addition, we
    recommend a Surgeon General’s letter be disseminated to inform clinicians
    and other health professionals throughout the US and its territories on the
    impact of CFS on the health of US adults and children.
    3.

    Establish progressive leadership at the CDC that can achieve efficient,
    meaningful progress in CFS research, clinical care, and education.
    (Resubmitted from May 2009)
    4.

    Multiple case definitions currently are used for CFS. The CFSAC rejects
    the empirical case definition and the terminology of “chronic un-wellness”,
    both of which are endorsed by the CDC, and recommends that DHHS recognize a
    need for and commit to support a national effort to arrive at a consensus
    definition of CFS that is accurate, standardized, and reflective of the true
    disease.
    5.

    Provide adequate funding to CDC to effectively carry out a detailed
    5-year plan. This should include, but not be limited to, immediate progress
    in these priority areas (Resubmitted from May 2009 with minor modification
    to [a]):
    1.

    Identification of biomarkers, with increasing efforts in viral
    etiology of CFS:
    2.

    Creation of updated guidelines for adult and pediatric CFS management
    in full partnership with organizations representing CFS scientific and
    clinical expertise;
    3.

    Provision of updated web-based guidelines for CFS management given our
    current state of knowledge and expert opinion, again in full partnership
    with organizations representing CFS clinical and scientific expertise; and
    4.

    Provision of 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.
  6. jspotila

    jspotila Senior Member

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    I want an update on the federal blood study re: XMRV.
  7. Hope123

    Hope123 Senior Member

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    Islandfinn and Jspotila, yes, we should look at past recommendations and hold the gov't accountable for what they promised to do -- even if things aren't finished yet, we should get an accounting of what is in the works. I had e-mailed Dr. Jones after the last meeting to get a list of the recs that were carried out for CFSAC vs. non-CFS advisory committees (she said there was a comparison list) but didn't get a response from her. Supposedly the % of recs carried out were similar but I want to see it for myself and what types of actions were taken.
  8. Stuart

    Stuart Senior Member

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    I second your remarks Islandfinn! Dr. Frieden should be there and we should work with Wanda Jones on that.

    Jpsot, that is the billion ton elephant in room isn't it?

    There are some answers that might be uncomfortable. If XMRV is in the blood supply, but the time and expense of mass testing prohibits a reliable and adequate supply of known safe blood, we are in a quandry. It seems likely that tissues would need to be tested before transplant as well, since the 2010 CROI found it was much more readily found in tissues than in the blood.

    If XMRV has been in circulation for decades and if the rates of infection are growing, could be a nasty shock.

    Public policy vs. politics vs. science will have it out (behind closed doors?), I feel a tiny bit better with Dr. Frieden around.

    Fingers crossed!
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Why the low % of recs carried out across other diseases?
    Do they only form advisory committees for diseases they wish to ignore?

    I would definately love to see Drs. Unger and Frieden. He sounds like he could help us since he seems to be very efficient/effective.

    I'd like to get an update on a search for the permanent Chronic Viral Diseases head. FWIW I am demanding that it be an outside expert who has the expertise, will and ability to effect an appropriate treatment of ME quickly. An ostensibly well meaning insider is not acceptable to me given CDC's long sordid history regarding ME.
  10. Hope123

    Hope123 Senior Member

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    I'm going to put a deadline on this thread to give it some closure. So, here's my thought - I will put whatever ideas people agree on by April 10 in a letter to Dr. Jones. Perhaps anyone who wants a copy can PM me and I will send them one so they can send it as well. I'll also try to get some back-up by sending it to the committee chair (Dr. Chris Snell?) as well. I'd welcome any help from Jspotila if she is able as she used to sit on CFSAC.

    Here are some other thoughts I had:

    - update from Social Security about what % of claims received are CFS-related; what % approved; how this compares with the general approval rate/ other illness approval rate; any variation among states (somehow, I've never heard numbers for this)

    - update from child-related DHHS departments about protecting kids from being taken away from the parents due to CFS

    - progress of arranging for the NIH state-of-the-art conference on CFS -- this has implication for establishing national guidelines for CFS care; I want the IACFS and other groups to have input into this esp. as IACFS is supposedly working on clinical guidelines for CFS
  11. Hope123

    Hope123 Senior Member

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    I have to look back at the notes but I think the % was like 20-30%. There's also only a few advisory committees for diseases - I think autism and HIV are two. It's actually a rare thing for a condition to have a federal advisory committee and we should take advantage of it as working with the a behemoth like the fed gov't is difficult.

    My brother used to do advocacy work in DC and his take on it was that appointments based primarily on political points rather than actual expertise/ interest could be a huge obstacle to progress. That's what the NYT article made me think of.
  12. jspotila

    jspotila Senior Member

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    I am happy to help if I can, but want to clarify that I never sat on the CFSAC. I've offered public comment, that's all. To be honest, I don't think I have the patience to serve on that committee!
  13. Hope123

    Hope123 Senior Member

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    My apologies. Brain wires crossed here. For some reason, I've seen your name in various places and got it crossed with Rebecca Artman (of PANDORA) who used to sit on the committee.
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYTimes article said Dr. Friedan is a fan of metrics and reporting so I'd like to ask him to make ME a reportable disease. This way med schools will be required to teach it.

    I'd like to have a priority to the requests indicated in any communication to CDC as the number of things we (rightly) ask for can seem overwhelming. And of course, the old issues of funding and who heads the Chronic Viral Disease Branch should be the first two.
  15. Hope123

    Hope123 Senior Member

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    Bumping up for any more ideas.................
  16. jspotila

    jspotila Senior Member

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    FYI - The meeting has been scheduled for May 10th. Anyone wishing to give testimony must register in advance. Details are on the CFSAC's website.

    Edited to add: Looks like the Federal Register notice has not yet been posted on the committee's website, so here is the text:
  17. Hope123

    Hope123 Senior Member

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    Jspotila, I was just going to post this. I'm going to try to change the title of the post to reflect the date.
  18. shrewsbury

    shrewsbury member

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    kelly posted this to CO-CURE today

    Federal Register: May 10, 2010 meeting of the HHS CFS Advisory Committee

    Note: Last October the HHS had to find a larger room to accommodate all the
    researchers, patients, federal employees and advocates who attended the CFS
    Advisory Committee meeting.

    Possibly as the result of testimony given that day Dr. William Reeves was subsequently
    moved out
    of the CDC CFS Research Program. Although an agenda has not been made
    public, many of the issues raised by attendees remain.

    • The CDC website has a brief statement about the possible pathogen XMRV, but
      the link takes inquirers out of the CFSRP pages.

    • The flawed 2005 empiric definition remains in place.

    • The five-year plan posted on the CDC website continues to contain
      controversial research components.


    • And despite remaining under the
      infectious disease division of the CDC does not have any studies planned
      targeting pathogenicity or biomarkers.

    Further information regarding the objections of the largest international
    body of CFS biomedical and behavioral educators and researchers can be found
    on the IACFS site. www.iacfs.org


    [Federal Register: April 1, 2010 (Volume 75, Number 62)]
    [Notices]
    [Page 16485]
    From the Federal Register Online via GPO Access [wais.access.gpo.gov]
    [DOCID:fr01ap10-74]
  19. shrewsbury

    shrewsbury member

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    CFSAC Meeting limits time to THREE minutes per speaker

    Mary Schweitzer PhD <marymsch@comcast.net> posted this to co-cure today

    According to the information in the Federal Register for the CFSAC meeting on 10 May 2010, "Time slots for public comment will be limited to three (3) minutes per speaker; no exceptions will be made."

    THREE minutes per speaker, for people with brain damage???

    The CFSCC (which existed during the Clinton administration; it was replaced by the CFSAC three years into the Bush administration) had better attendance, allowed five minutes for testimony but ALSO allowed 3-5 questions from the public after each ex officio member's presentation.

    It's like pushing a string - they give in on one issue (live streaming) but make the others worse (no questions permitted from the public, and public members now have REDUCED time for their verbal testimony.)

    I hope they make up for it by accomplishing something - like really stopping the psychiatric program on CFS at CDC and Emory.

    Mary Schweitzer
  20. Hope123

    Hope123 Senior Member

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    IF, Mary S.'s issues can be written about to Dr. Jones before the meeting also. She and others can request that more than 3 minutes be allowed for each speaker depending on the number of speakers and that questions be permitted from the public.

    Other possibilities: allowing people to give up their spot to another speaker they feel needs to be heard more than them.

    My point is: it's fine to vent among ourselves but if we don't tell the people who have control over this what we want, we don't have a chance of getting it.

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