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Talking with CFSAC - Views from the other side of the table

Discussion in 'Phoenix Rising Articles' started by Mark, Aug 19, 2013.

  1. Nielk

    Nielk

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    (my bold)

    The "stigma" of ME/CFS seems to be all encompassing. It touches everyone; starting with patients, their families, doctors, clinicians, researchers..etc. I have been thinking about this a lot lately and wondering how we can come out from this hole. I would imagine that if a accepted biomarkers is found that points to a real biological disease, this would fade away. I thought that we had that with the repeat exercise tests.I am really surprised that Dr. Unger/CDC does not take this seriously. If this has been found to be true in some studies, why is there no desire to replicate it?
    biophile, WillowJ and Kati like this.
  2. Nielk

    Nielk

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    Exactly!
    This is why patient groups and patient advocates have written a letter to CFSAC - see Mark's article.
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  3. Nielk

    Nielk

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    This is from Cort's article at Simmaron:


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  4. Nielk

    Nielk

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    Otis,

    It is the DFO who manages the meetings. See below from CFSAC's charter.

  5. Mesurfer

    Mesurfer

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    In my opinion the most imortant qoute in this entire article is by Dr Kenneth Friedman and is the reason why other illnesses gut funded and ours doesn't.

    "From my viewpoint, the Committee was most effective when large numbers of patients were in the audience at the CFSAC meetings and exhibited some signs of militancy. It was clear that the DHHS did not want patient demonstrations and seemed more willing to negotiate agenda items when failing to acquiesce to CFSAC recommendations might possibly result in patients demonstrating their disapproval."


    The CDC will continue to ignore us if no pressure is applied.

    Thanks for the great article.
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  6. Nielk

    Nielk

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    We need to start applying a lot more pressure if we want to see any results. It seems that all the letter writing and/or testimonies are being ignored. It is clearly not working. We need another avenue of action. Maybe protests are what is needed.
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  7. WillowJ

    WillowJ Senior Member

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    isn't keep up the pressure what Dr. Lipkin said?
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  8. WillowJ

    WillowJ Senior Member

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    I wonder this, too. I worry about the repeat exercise test because only the better patients can do that, but it should e replicated with whomever is well enough.

    But it's not like we lack other biomarker candidates - which have also not been followed up on.
  9. Bob

    Bob

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    Nielk, I've just got around to reading the article. Thanks very much for taking the time and effort to do this. :)

    It's interesting to hear the personal perspectives of the committee members.

    I agree with Dr Friedman that "Neuro Endocrine Immune Dysfunction" (NEID) would be a good name.
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  10. Bob

    Bob

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    Hi Willow, are you able to elaborate on what you mean by this? i.e. what registries are you referring to?
  11. Bob

    Bob

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    Is anyone able to point me towards information on the Steven's Protocol please?
    I'm not sure if I've come across it before.
  12. Firestormm

    Firestormm Senior Member

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    Same as the Snell one, Bob. Indeed they appear to have developed it together :)
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  13. WillowJ

    WillowJ Senior Member

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    sorry about confusing you with the plural. just one registry. The Georgia one you posted up here.
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  14. WillowJ

    WillowJ Senior Member

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    yes, thanks very much for the article. I enjoyed reading it :)
  15. Bob

    Bob

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  16. jimells

    jimells Senior Member

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    This is really important. It demonstrates the purpose of the committee: lots of sound and fury signifying nothing. Obviously there are committee members who are truly trying to help us, but they are participating in an institution designed to be ineffective. Until the committee becomes independent, which the rules apparently do not allow, we are beating our heads against the wall.

    When I read this, I nearly exploded. This is exactly what the civil rights leaders of the 1960s were told. Fifty years later, the "Whites Only" signs are gone, while millions of young black men are in prisons, jails, probation, parole, unable to find work, and abused by police on a daily basis.

    Being patient is the last thing we should do. Any CFSAC chair who seriously suggests that we should simply wait another 30 years deserves to be tarred and feathered. After all, they are clearly too chicken to take the bureaucracy.
  17. Ember

    Ember Senior Member

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    Once the meeting is called to order, doesn't approval of the agenda fall to the Committee?
  18. Ember

    Ember Senior Member

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    Under Robert's Rules of Order, a majority vote is required to adopt the agenda. After it's adopted, only a two-thirds vote or general consent may change the agenda. (Sorry, I should have asked about adopting rather than approving the agenda in my post above; the edit function isn't working for me.)
  19. Nielk

    Nielk

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    Dr. Kenneth Friedman said:

    It sounds to me that the DFO is setting the agenda and this causes frustrations to the committee members. How can they do their work effectively when they can't even set their own agenda???
  20. Ember

    Ember Senior Member

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    Couldn't a voting member seek adoption of the agenda (moving a motion if necessary) at the beginning of a meeting? Committee members would then be able to suggest or move amendments before any vote. In that way, the Committee could be setting its own agenda.

    (Any insights, by the way, into the failure of the edit command?)

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