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Spring CFSAC 2013 Meeting live streaming starting today - Weds 22 May

Discussion in 'General ME/CFS News' started by Sasha, May 22, 2013.

  1. akrasia

    akrasia Senior Member

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    Something very disquieting happened about a half hour ago at the CFSAC meeting. Eileen Holderman, close to tears, said she and two others, one of whom was Maryanne Fletcher, had been threatened by lawyers with expulsion from the committee for speaking their minds about the inadequacies, stonewalling, and high handed obstruction by the NIH representative, who wouldn't divulge how an important committee for an upcoming workshop was chosen. As I remember, Susan Maier said the selection of these "experts" came from "on high," and would divulge nothing else.

    This is, of course, my characterization of what happened. Eileen et al, to my ears. were tough but polite.

    Anyway, Eileen, if you read this, I think you did a splendid job over the last few days and at the FDA ampligen meeting.
    BRAVA.
     
  2. Hope123

    Hope123 Senior Member

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    I suggest everyone who saw that and was disturbed by it write cfsac@dhhs.gov. Eileen is the patient representative so that makes her position all the more vulnerable. They can't bully us like this.
     
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  3. Sing

    Sing Senior Member

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    Without commenting on the substance of what she wanted to talk about because I don't know what those facts really were and they weren't fully presented, Eileen was trying to override the rules of the meeting in that instance with what she wanted to bring up, which the moderator responded to by insisting on sticking to those rules. My impression was not that he or anyone else in the meeting necessarily thought her subject was not important but rather that it was not in order then. Their exchange was certainly a dramatic clash of assertive statements on both sides, which I am sure a lot of people will want to hear.
     
  4. Mark

    Mark Acting CEO

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    The way I interpreted it - and I may well be wrong, it wasn't easy to guess/interpret what went on there, it kind of came from nowhere from the observer's point of view but has clearly been bubbling away - was that the 3 (Eileen, Mary-Anne, and one other unknown to us) had been so threatened, by phone, by the Chair (Gailen Marshall) and that lawyers were involved; it wasn't clear to me on what side(s) the lawyers were involved. Also we don't yet have the full story (and probably won't get both sides) of what the reason for, and wording of those alleged threats was, and I don't know if it's true that the full reason was all about the criticism of Susan Maier and NIH per se or if they were more procedural issues that prompted this action (i.e. the way things were said).

    Re: the selection of the NIH committee: Maier explained that the people who decided who would be chosen to form the new workshop working group were internal NIH staff and it appeared that she was not in a position to divulge who they were. She also explained that those people had chosen a variety of clinicians, physicians and patient/advocate/org reps to a total of 30 or so people who would then be formulating the questions for the workshop. That list of names, IIRC, is also not yet public, but I think she said it soon will be. I'd have to check my notes...will do so later. I'll be attempting to write something up on the CFSAC meeting this weekend; I took extensive notes.

    For what it's worth, I too appreciated Eileen and Mary-Anne's contributions at the meeting, but I also believed (and believe) that Susan Maier is indeed very sincere and honest in what she's said to the committee and that she works very hard, as she says, and is in a very difficult position in advocating for ME/CFS within the FDA. I think it's really important to recognise the distinction on the committee between the other committee members and the federal reps. The federal reps are there in a capacity whereby they represent their department, it's part of their job, their hands may often be tied to a considerable extent, they say and do what they can, and they are a go-between between the committee and their departments. I really think that most or all of them are probably there because they care a lot about ME/CFS - and indeed understand and buy into the political issues that concern the committee - far more than anybody else in their departments. They also, however, recognise a whole load of wider practicalities in terms of how their departments function and operate, and they try to translate what the committee says into the reality on the ground in their departments. I think extended conversations on the committee with those reps are important, and pressing them on details is certainly important, those conversations are critically important, but a degree of trust in the individuals involved (even if not, necessarily, their departments) is appropriate. I have never seen any reason to doubt the good faith of those individuals while I've been watching CFSAC (which is about 3 years now), and Maier in particular has struck me as a very committed individual.

    So what happened was a great shame, but perhaps it's just to be expected that the extraordinary tension, which flows from a spectrum from patients and physicians at one end, through the committee and on the the federal departments at the other, has to have a point of tension somewhere, when there is such a huge disparity between the way the two ends of the spectrum see things. It's extremely difficult to work across and through those lines of communication, but also extremely important to try to do so, and I greatly respect everyone involved for their commitment in being involved in doing that.
     
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  5. akrasia

    akrasia Senior Member

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    Sing,

    This wasn't about Eileen's desire to give her report on the sub committee she headed. To my ears it was about some of the questions being posed by Eileen, MaryAnne Fletcher, and another person.

    As you say, it's well within Gailen Marshall's remit to keep the meeting in order but that was at a different point. It's government lawyers threatening expulsion of the patient rep and a staunch ally like Fletcher that is deeply troubling. I
    expect we will learn more of what happened. At the moment, it looks very bad to me...
     
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  6. JayS

    JayS

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    Eileen said the threats came from the DFO (Nancy Lee, who replaced Wanda Jones), not the Chair. Mary Anne said she'd been threatened with being removed--I think she said 'eviction'--from the Committee. Susan Maier doesn't advocate within the FDA, as she's the NIH rep.
     
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  7. Nielk

    Nielk

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    This is weird. I wrote this in the morning and now I read that they were both threatened? I have been watching the whole time and missed the last hour so I have no idea what happened.
     
  8. Nielk

    Nielk

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    Do you know for what reason they were threatened?
     
  9. LaurelW

    LaurelW Senior Member

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    It seems to me that there is always a bit of a spat of some kind on the afternoon of the second day. People are exhausted, the material to be gotten through is pretty heavy, and people get snippy. I just hope it all sorts itself out.
     
  10. Nielk

    Nielk

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    You can read Marry Dimmock's testimony here.
     
  11. JayS

    JayS

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    No, but it sure doesn't look good.
     
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  12. jspotila

    jspotila Senior Member

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    And I will add that my understanding of what I saw/heard was that one or more of the three committee members who felt intimidated had talked to lawyers. I did NOT hear Eileen say that she was threatened or intimidated by an HHS lawyer.
     
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  13. Sing

    Sing Senior Member

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    Mark, Jay, Akrasia and Jennie, thanks for responding and helping to add more to our understanding so far.

    I am also remembering now how Susan Maier said she had been mocked for her work on this committee by ? others in her agency? And that Dr. Ken Friedman had brought up how he had lost his position in an academic institution, as had another man he knew also doing research on ME/CFS. Hope I am getting the details right. These were all our doctors, advocates and researchers being put down or threatened in some way for pursuing this work. (Probably there would be a lot more stories like this which could be told.)

    To me this was poignant in how they too share in our experience of being disrespected and sometimes worse. All these individuals deserve an opportunity to communicate about what happened. But in terms of this meeting and its agenda and rules, I think they could only squeeze some of this in "sideways", within other agenda items, timing and rules, and so it was indeed frustrating. To me this leaves more unfinished business and provides even more reason why it is so important for us to gain a respected place in the medical field.
     
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  14. akrasia

    akrasia Senior Member

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    Thanks for the clarification. I found much of the meeting difficult to heàr. The point, in the end, is that they were threatened.
     
  15. Dolphin

    Dolphin Senior Member

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    One person posted this on Facebook and said no credit to her was necessary for re-posting it:
    (I wasn't listening myself)

    By the way, who is Jason? Leonard Jason?
     
  16. jspotila

    jspotila Senior Member

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    No, it was not Leonard Jason as he wasn't there. Based on my notes, I think it was Ken Friedman who said that.
     
  17. Dolphin

    Dolphin Senior Member

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    Ken Friedman and Leonard Jason are both bald men - I wonder whether this is causing any confusion?
     
  18. Mark

    Mark Acting CEO

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    Thanks for the clarification JayS, I wasn't clear at the time exactly where the alleged threats were said to have came from and apologies if I caused any confusion. Also sorry for my oversight in mistyping FDA rather than NIH in part of my comment above.
     
  19. Mark

    Mark Acting CEO

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    Well said; yes I do agree that the pressure and exhaustion are part of this. The business end of CFSAC always seems to be time-pressured in the last couple of hours and I do wonder whether the agenda could be organised differently to avoid that, but perhaps it's inevitable. There's some kind of dynamic there whereby there are pressures that eventually blow at some point. Frustrations build up over the course of the two days and when time starts to run out, that comes out.
     
  20. Mark

    Mark Acting CEO

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    Thanks Jennie; that's how I heard it too and that was the main thing I was trying to clarify in my earlier post.
     

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