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Next CFSAC Meeting - August 18th & 19th, 2015

Discussion in 'Action Alerts and Advocacy' started by Nielk, Jul 20, 2015.

  1. halcyon

    halcyon Senior Member

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    They couldn't say exactly when but they don't put them up immediately. Looking at past meetings it looks like it takes several weeks to over a month.
     
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  2. Izola

    Izola Senior Member

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    What other disease get battered around on the name for years w/o any NIH /CDC focus on researching the disease? Dam*. iz
     
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  3. jimells

    jimells Senior Member

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    NIH Director Collins must've watched the movie "Groundhog Day" and decided it would be a good strategy for not helping us. I stumbled across the minutes of the very first CFSAC meeting in Sept 2003. (Prior to that there was a different committee called the "CFSCC")

    Let's see how much progress has been made in the last 12 years:

    Access is still difficult. At the recent meeting, it was suggested that attendees needed to allow a half hour for the Grope Squad.

    Twelve years later and the program *still* doesn't have a home. Thank you Dr Fauci. It's good to have it in the official records that Fauci was responsible for this. In fact, these minutes describe much interesting history. They are a valuable resource.

    So we know that for at least the past 15 years, Congress has been involved, and NIH *still* refuses to be moved.

    Sounds just like the recent AHRQ report - or did they just put a new cover on the old report?


    Actually, this is much worse than Groundhog Day. There is currently no Program Announcement or RFA. The Cooperative Research Centers closed at the end of 2003.

    Last year NIH told the CFSAC that there would be no RFA. The CDC budget recommendation (only a recommendation) is zero, and NIH is expected to spend about $5 million. They are feeding us shit sandwiches and telling us it's lobster.

    I wonder what these "Career Development Awards" are and who got them. I don't recall hearing any psychobabble during the meeting, so maybe we are making a little progress here, although I vaguely recall that Dr Unger still promotes the "mind-body" nonsense, and she is still publishing studies that conclude that "women's complaints" might cause and perpetuate "CFS".

    NIH has rejected the CFSAC's most recent call for a patient registry and biobank. And once again CFSAC has repeated the recommendation in this week's meeting with slightly different words that they hope will be more palatable to NIH.


    It only took ten years, but it looks like this recommendation is finally happening. Hooray!

    Now they don't even bother to try to appease us with "we'll try to". Now it's just plain ole "No - 'Cause I said so!"

    So having determined that different case definitions are problematic, Reeves develops at least two more. :bang-head:

    Sounds just like the boilerplate we heard this week.


    As far as I know, this issue has still not been resolved. It might be the subject of one of the new recommendations.


    Well we all know that physician training has been a complete failure, unless the goal is to make sure we are treated badly. When CFSAC was speculating on continuing medical education this week, I didn't hear the HRSA rep point out that CME for GPs is something they are supposed to be doing.


    So it's Osama bin Laden's fault that doctors don't know about our illness. It would almost be comical if it wasn't so pathetic. Almost. I didn't hear this excuse this week, so maybe that's progress?


    The Name Change Workgroup started in 2000, but accomplished little because of the 2 1/2 year gap between the last CFSCC meeting and the first CFSAC meeting. Fifteen years after the workgroup was formed, CFSAC *still* doesn't know what name to use, even in its own recommendations. :bang-head::bang-head::bang-head:
     
  4. leokitten

    leokitten Senior Member

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    From my understanding there is no general ME/CFS fund, all ME/CFS projects get funded by an IC (i.e. NIH Institute/Center) or the OD (Office of the Director). See here for 2014:

    http://report.nih.gov/categorical_s...ARRA=N&DCat=Chronic Fatigue Syndrome (ME/CFS)
     
  5. jimells

    jimells Senior Member

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    Yes, which is why CFSAC and advocates have been calling for an RFA for years, since they usually include dedicated funds. The last one was issued about 10 years ago, IIRC

    How funding happens is incredibly complicated. There's about a million ways to get any one project funded, if the leadership really wants it to happen - another reason why the constant whining about NIH poverty doesn't hold much water.
     
  6. Denise

    Denise Senior Member

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    The videos are available:
    https://www.youtube.com/playlist?list=PLrl7E8KABz1GQ61Y44NmuLJj5j9Xk2MqA
    (I was surprised to find them posted so soon after the meeting. Keep in mind the minutes, etc are not yet available. 508 compliance and all that...)
     
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  7. leokitten

    leokitten Senior Member

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    @Denise to further answer your question I believe @jimells is correct the SEP reviews all ME/CFS grants regardless of funding IC. After SEP there is a second-level review and council decision to work out administrative issues and whether the IC can fund it or not based on the grant ranking percentile.
     
  8. Nielk

    Nielk

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  9. leokitten

    leokitten Senior Member

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  10. medfeb

    medfeb Senior Member

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  11. leokitten

    leokitten Senior Member

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  12. Denise

    Denise Senior Member

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  13. Denise

    Denise Senior Member

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    Public comment submitted for the public record* has now been posted:

    http://www.hhs.gov/advcomcfs/meetings/presentations/20150818.html




    Chronic Fatigue Syndrome Advisory Committee (CFSAC) Presentations for August 18-19, 2015 In-Person Meeting

    Public Testimony

    August 18-19 2015





    http://www.hhs.gov/advcomcfs/meetings/presentations/20150818.html




    (* for those who don't know – for public comment to go on the public record it must be submitted by the deadline – usually about a week before the CFSAC meeting)
     
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  14. Nielk

    Nielk

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    Does anyone have the powerpoint slides from this CSFAC meeting?
     
  15. Denise

    Denise Senior Member

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    I haven't seen them anywhere... If you do find them, please post a link here.
     
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  16. Denise

    Denise Senior Member

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    During the August CFSAC meeting session about the “Unresolved Disease Name


    Dr. Lee said someone else will soon be taking over DFO duties. But a CFSAC meeting may be able to be scheduled before the winter holidays. ...”


    The CFSAC roster (as of 28 Dec 2015) still lists Dr. Lee as DFO


    The terms of 4 CFSAC members expire in 2016 (Casillas, Paterson Collier, Corbin and Fletcher).


    Has there been any news about the new DFO,

    about the next meeting,

    and

    about when the nomination process will begin to replace the 4 departing CFSAC members?
     
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