CFSAC recommendations: We did it!

Discussion in 'Fibromyalgia Main Forum' started by karynwolfe, Oct 30, 2009.

  1. karynwolfe

    karynwolfe New Member

    Allow me to be happy about this part:

    Yes, guys, they mentioned that petition (albeit they only said 1,000 - wait til they realize it's nearly 2,000! ) and unanimously agreed (everyone agreed!) to recommend to the CDC that they get rid of Reeve's empiric definition and go back to the Fukada definition, and to include the Canadian definition as well as the new pediatric definition.

    They ALSO mentioned that Reeves was biased against scientific research of CFS and therefore that should exclude him from being involved in further research! Let's hope that means he's gone!

    So to all the CFS and M.E. community who helped (and, like me, who made themselves sick with trying to collect signatures, LOL), we're one step ahead from where we were!

    (edited to include petition link)[This Message was Edited on 10/30/2009]
  2. Elisa

    Elisa Member

    Hi Karen,

    Thanks you for championing for this petition. I signed too- and congrats to you and all of us for reaching the goal!!!

    Happy to hear the news!

    God Bless,


  3. QuayMan

    QuayMan Member

    Congrats to all - the numbers helped.

    [Aside: I'm not exactly sure why 1000 was mentioned as I E-mailed them 11.17am Wednesday (hoping to get them before they left for the meeting) to say it was 1909, saying this could be described as "nearly 2000". Marly Silverman yesterday said 1891. I was hoping it would reach 2000 and I would then E-mail Prof. Jason who I reckoned would have his laptop). My guess is they didn't remember the exact number and didn't want to overplay it if they were wrong.

    Anyway, I don't mean to be "greedy" but if anyone says the petition is closed, please tell them that is not correct. For one thing, it's 1991 now and it'd be nice to get to 2000 anyway].

    [This Message was Edited on 10/30/2009]
  4. jasminetee

    jasminetee Member

    We're really lucky to have dedicated people like both of you pulling for all of us and helping us fight the evil CDC.

    Almost 2000 signatures is great!

    I liked what the caller said yesterday about feeling like she was in The Wizard of Oz and XMRV is the house and it just fell on the CDC and the WPI is our Emerald City. May I add, "and when Toto (the CFS community) pulls the curtain back, you will see that all this time the Wizard was just a sad, old, ordinary, little man."

    [This Message was Edited on 10/30/2009]
  5. AuntTammie

    AuntTammie New Member

    love these comments:

    "They ALSO mentioned that Reeves was biased against scientific research of CFS and therefore that should exclude him from being involved in further research! Let's hope that means he's gone!"

    "and when Toto (the CFS community) pulls the curtain back, you will see that all this time the Wizard was just a sad, old, ordinary, little man."

    I hope, I hope, I hope, I hope that this means that the CDC will finally be held accountable, Reeves will be gone, and we can actually get somewhere with the XMRV discovery

    I pray that this is not all just lip service and that they fail once again to follow thru.....I think that WPI and XMRV will keep this from being more history repeating itself
  6. karynwolfe

    karynwolfe New Member

    ***Committee Recommendations
    May 27-28, 2009

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

    Recommendation # 1
    Establish progressive leadership at the CDC that can achieve efficient meaningful progress in CFS research, clinical care and education.

    Recommendation # 2
    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:

    1. Identification of biomarkers and etiology of CFS;
    2. Creation of guidelines for adult and pediatric CFS management in full partnership with organizations representing CFS scientific and clinical expertise;
    3. Provision of 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.

    Recommendation # 3
    Establish Regional Centers funded by DHHS for clinical care, research, and education on CFS. These centers will provide care to this critically underserved population, educate providers, outreach to the community, and provide effective basic science, translational, and clinical research on CFS.***

    Nothing in there about getting rid of the empiric definition. =) This time, they said Rec #1 was still to get proper leadership, and Rec #2 is to get rid of that definition. Et cetera. They also kept the old Rec #2, saying everything there still applied.
  7. QuayMan

    QuayMan Member

    Zero.dip - you are right that it hasn't changed it yet but it increases the pressure - this is something people can quote rather trying to give complicated reasons why the criteria are bad.

    And as Karynwolfe said, it didn't make it to the last recommendations.

    Also the CDC have got away with using these criteria since the end of 2005 producing dozens of papers. Including one this year that found a lifetime psychopathology rate of 89% and current psychopathology rate of 57% and which recommended that CFS patients should see psychiatrists more. Then there was the two studies talking abut childhood abuse. These types of population studies can look convincing. Something needs to be done on this.

    As well as increasing the pressure, it will hopefully increase the awareness of the issue. Until now, the CDC have been getting away saying they're just using the Fukuda definition.
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  8. Spinetti

    Spinetti New Member

    Great job! I never thought I would see this happen. Let's be hopeful!
  9. denis321

    denis321 New Member

    I watched the entire recommendation discussion and I know they were trying to craft how the language should go. I will review it when it comes out on archived but I specifically recall them debating using "reject" vs. "abandon" as language on the empiric definition part.

    I don't recall them deciding to NOT say anything on the definition. The last part of the talk about it involved the CDC rep (Mike Miller - Zoonotic Disease director) saying if they wanted the definition changed, the CFSAC would need to write a rationalization to have it changed. Dr. Jason started to say the reasons and Mike Miller said something like they needed a rationalization again. Then the talk switched over to the 5-year plan (Rec #2)

    So my impression from CFSAC was that they would need to work on this part. I hope they didn't just "forget" it because, although I like Oleske, he seems somewhat disorganized, forgetting people's names, calling "ME" "EM", etc. If they did decide to not do it, they should have rejected the motion formally.

    There was some tension in the during the discussion because there was a feeling from some that the CDC CFS program should be suspended entirely but other members gave good reasons politically about how that would not work.

    You should get the petition to them anyway, Quayman. I don't know how good they are about checking the CFSAC mailbox though.
  10. QuayMan

    QuayMan Member

    Just to be clear, I E-mailed all but 1 of the voting members of the CFSAC directly based on E-mail addresses I found by searching around the Internet (despite my best efforts I couldn't find one for Dr Morris Papernik - don't know if it was a coincidence that he seemed the most uneasy about criticisms of the CDC's plan). So they got the number on Wednesday (unless they didn't check their E-mails after 11.17am EST).

    When I submitted the written testimony to the CFSAC address, the number was 1641 so again a lot more than 1000.

    By the way, I did the same thing in May - writing directly to the members when the number went over 1000 (it has been over 600 when I submitted the written testimony).

    I watched some of the discussion by chance. They seemed to agree to the wording "flawed" but then I'm not sure if Rebecca incorporated that.
    [This Message was Edited on 10/30/2009]
  11. PoodlesMom

    PoodlesMom New Member

    I tried to watch and listen to all of it but missed the regular CFS'ers say anything. Sorry, I kept falling asleep. Not due to content, just very very tired.

    But I would absolutly feel embarrassed to show my face if I were Reeves.
    It blows my mind that he's still there.

    Thanks to all who put the work in. I have a hard time with words. Wish I could have done more.

    I did sign the petition tho.

    I raise my hot tea in celebration for all of the people involved. Cheers!!

  12. karynwolfe

    karynwolfe New Member

    "I raise my hot tea in celebration for all of the people involved. Cheers!!"

    Here here! =)
  13. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I still say that you got to get the news media involved to apply pressure. The committee has been giving good recommendations, people testify, but they are preaching to the choir. The pressure needs to be on those who actually make the decisions. These people are insulated by this committee from facing the researchers and patients eye to eye.

    The news media can change this. I sent a news tip to 60 Minutes. I emphasized that the blood supply may be contaminated with a virus that is very similar to HIV. And I referred to the CFSAC meetings for authority.

    I explained that this story includes misappropriated funds, government neglect, health danger to large population of people who now feel healthy, controversy among doctors and sexism.

    If I don't hear something from them in a week, I will go to 20/20.

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  14. QuayMan

    QuayMan Member

    I agree that media coverage would be good.
    I won't be able to get media coverage on this - it'll be up to people in the US.
  15. Spinetti

    Spinetti New Member

    After plenty of rest, of course.

    As far as I know, the Secretary of Health and Human Services, who would be Kathleen Sebelius now, has never even sent a reply to the CFSAC recommendations -- let alone acted on them.

    We must let Sec. Sebelius know this is no longer acceptable.

    I'm working on the Washington Post, Quayman. I can't thank you enough for what you've done. Somebody's got to do the hard slogs.

    ETA: I think giving the URL's of the YouTube videos of the meeting in responses would be very helpful. I can't imagine anyone watching the testimony who would not be moved.
    [This Message was Edited on 10/31/2009]
  16. Spinetti

    Spinetti New Member

    If I could have my one choice for coverage, that would be it.

    Once they get on to something, they do it right. 60 Minutes has really broken open many neglected issues.

    Good work, Tina. Thanks. That's so important. I hope others do the same.

    [This Message was Edited on 10/31/2009]
  17. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I'll try again Tuesday.

  18. victoria

    victoria New Member

    Is there an 'official' link that I can go to that 'officially' updates the situation?

    I need it for doubters... Thanks

    all the best,

  19. hensue

    hensue New Member

    I just want to make sure that now the new def and steps are heard by the lady in charge.
    I think every thing that has happened is wonderful.

    We are now making progress and I want to see the mometum keep on going.

    I did not see who retired from the group on the webcast. Who retired and who is taking there place?

    take care
  20. victoria

    victoria New Member

    (LOL) I definitely wasn't talking about the community here...

    I wanted to send it to certain people!