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From the front row of the ME/CFS AC Meeting

Discussion in 'Action Alerts and Advocacy' started by BEG, Oct 17, 2010.

  1. Sasha

    Sasha Fine, thank you

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    Thanks. Just amazing.

    I had to give a talk a few years ago to a group of about a dozen people around a table and the one dead opposite me - a woman eight and a half months pregnant - fell asleep after five minutes and stayed that way for my whole talk! She had a sound medical reason, obviously, but it was hugely distracting and so it must have been for the other CFSAC members having to have this unconscious jackass among them while they were talking. It's way beyond unprofessional - a huge insult to the patient community.
  2. Andrew

    Andrew Senior Member

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    It would be good to have a link to the movie of the meeting.
  3. zzzz

    zzzz

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    Shouldn't we be hitting the CDC next. Aren't they responsable for all we've had to go through for the last 3 decades? Muffin is right, we should be voicing our discontent every time we hear or see things we don't like and get served the old bulshit. I didn't watch E. Hunger at the CFSAC but I'd be very happy to blast at the CDC, for whatever reason, starting with their website. Any ideas anyone?
  4. dannybex

    dannybex Senior Member

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    youtube of the meeting...

    Hi Andrew...I posted a link at the bottom of page 2...
  5. BEG

    BEG Senior Member

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    I could really locate him from the webinar, but I can't pull it up because I'm having problems with adobe and the webinar won't run without it. However, I'll keep looking at the tiny pictures for Sleepy.
  6. leela

    leela Slow But Hopeful

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  7. BEG

    BEG Senior Member

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    Here is a link to the CFSAC webcast. http://www.hhs.gov/advcomcfs/index.html

    Look to the right of the page and click on Video Cast Oct. 12-14 Meeting. If you can find location 3:43:44, you will see Marc Cavaille with his cup of coffee on the right taking his seat. He is wearing a light colored suit.
  8. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Sounds like a good cause to me, if someone can summarize the game plan, that would be nice. thanks!
  9. leaves

    leaves Senior Member

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    what a total w*nker
    unbelievable
  10. BEG

    BEG Senior Member

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    In short, the FDA guy sleeps (a lot) during the CFSAC meetings. I became aware of it as I watched the webcasts in the past. It wasn't until I saw him in person that I realized the extent of it. I believe the patient population deserves better than that. Because he sleeps through pertinent testimony and speeches, how will he know the right ME/CFS drug if it came along and hit him?

    I am sending e-mails to the following people:

    Sleepy FDA guy: marc.cavaillecoll@fda.hhs.gov phone: 301-796-0689; fax 301-796-9880

    cc: Sleepy's direct Supervisor: Renata.albrecht@fda.hhs.gov Phone: 301-796-1660; fax: 301-796-9881

    cc: Sleepy's direct Supervisor's Supervisor: edward.cox@fda.hhs.gov

    cc: Wanda Jones, Designated Federal Official of the CFSAC: wanda.jones@hhs.gov; phone: 202-260-4432; fax 202-401-4005


    This is not about Ampligen at this time. It is about the sleeping. An e-mail can be very short, something to the effect of stop sleeping at the ME/CFSAC meetings, please tender your resignation because you can't seem to stay awake during important information, it makes me tired watching you sleep during the CFSAC meetings, we deserve better than a sleeper from the FDA for the CFSAC meetings. You can be creative. It can be long or short. Whatever you can do.
  11. Sasha

    Sasha Fine, thank you

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    I still just can't get over this. Isn't Wanda Jones that very formiddable lady? I'm amazed a strong chairperson would let him sleep through meetings like this. Can't believe she told people off for holding placards while letting this guy insult everyone by sleeping in plain view.

    Has anyone had a reply from him or his bosses? I just think this is so awful.
  12. BEG

    BEG Senior Member

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    Wanda Jones impressed me greatly. Very personable and approachable yet tough when the circumstances call for it.

    This sleep business has gone on for a long time. Maybe it's narcolepsy? Who knows why it's tolerated. Maybe it isn't, though. They really nailed him on that last day.

    Sasha, I think you're onto something. Direct an e-mail to Wanda Jones and ask why it's tolerated. Very simple.

    I haven't heard a thing from anyone, BTW.
  13. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Quite seriously Muffin, that thought occurred to me too. Given the apparent prevalence of ME/XMRV in the general population, he might actually have the illness, or some other medical condition, or be on some medication which might account for him falling asleep. (Someone also mentioned that he had a cup of coffee in front of him?)

    Before we all jump on him indignantly, it might be worth considering all the options, in the same way that we might like people NOT to jump to conclusions about our behaviour etc. If it did turn out he has some chronic medical condition, or has been suffering with insomnia for eg, the poor guy might be really struggling to hold onto his job, to keep going, to pay his mortgage etc. I definitely wouldn't want to be responsible for him being fired if that's the case ..
  14. BEG

    BEG Senior Member

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    PictureofHealth,

    You bring up a very valid point. However, I wish I had a boss like you when I asked if I could cut my hours because of ME/CFS. Hah! I was told as long as I got all my work done I could, so I layed on a cot in my office during lunch, and struggled through. My doctor was telling me to cut back the hours and go part-time. I knew it would be career suicide. Eventually I went on disability when the cognitive dysfuntion hit. I, too,had financial obligations, a mortgage to pay, and a career which I desperately wanted to hold onto.

    I guess we should all be so lucky to have the government as our empoyer. I actually like Muffin's ideas, particularly asking him if he's been tested for XMRV. :In bed:
  15. Sasha

    Sasha Fine, thank you

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    Hi Picture - I agree that we should be compassionate where we can but this guy is in a position to influence the life-chances of millions of very sick people worldwide. If he isn't well enough to do his job, it's his responsibility to stop putting his own needs before those millions of people who are far to sick to work themselves and take himself out of the frame.

    I can understand someone finding themselves ill on the day and inadvertently dropping off but if he has been doing this for years it's entirely another matter - it's predictable and he is turning up to these meetings knowing that he's going to be sleeping through large sections of them. He is representing the FDA on CFSAC - he simply cannot do that while he is asleep and they should not be allowing him to do so.

    I will email Wanda Jones and ask her permission to repost her reply.
  16. Sasha

    Sasha Fine, thank you

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    I just emailed Wanda Jones as follows:

    Dear Dr Jones,

    I have ME/CFS and have been severely disabled for 25 years. I live in the UK and follow the latest US research via the Phoenix Rising web forum run by patient advocate Cort Johnson.

    I gather from reports of this month's CFSAC meeting from patients who attended that Dr Cavaille-Coll of the FDA slept through approximately 30% of the meeting and that he has behaved similarly in previous CFSAC meetings.

    I find this terribly shocking and would like to know why he is allowed to behave in a way that is so insulting to patients, and to do so repeatedly. I hope that Dr Cavaille-Coll is not himself ill but whatever the reason for his being asleep he cannot possibly do his job in such a state. He is in a position to influence the life chances of millions of very sick people worldwide and does not appear fit to perform this important role. If the reports of his sleeping are true I think that he should be dismissed from the committee.

    I would be very grateful if you would let me know whether you have noted Dr Cavaille-Coll being asleep and if so, why he has been allowed to sleep and whether any action will be taken to dismiss him from the committee.

    Please let me know if I am at liberty to repost your reply to the Phoenix Rising forum.

    Yours sincerely,
    Sasha *********​
  17. Cort

    Cort Phoenix Rising Founder

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    I agree he shouldn't be there - I just don't know why he's there - its a total waste of the taxpayer's money to have him sit there for two days. He apparently is legally bound not to say anything about a drug under review - so he has nothing to contribute (apparently). I say release him and remove the FDA ex officio representative totally.
  18. Otis

    Otis SeƱor Mumbler

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    I adamantly disagree with removing the FDA ex officio! We deserve and need an FDA interface, albeit a much better one. This joker was unwilling to open his FDA Rolodex to help make introductions to his colleagues but he SHOULD be willing to do so. The FDA is to critical to matters of blood safety, drug approval (I realize it's a touchy matter) and approval of tests such a standardized XMRV test which every knows we need to rattle off the things that come to mind. No person can cover that ground but I've had responsibilities to go find answers and points of contacts on behalf of a larger organization in my professional life so why not the ex-officios? I think it's time for an action item list for members with tracked due dates. Goes with the territory does it not?
  19. Cloud

    Cloud Guest

    If he has been seen doing this frequently, my first thought is sleep apnea. Maybe the guy does have a legitimate medical problem, but that is beside the point because it would still be incompetence. He needs confronted on this behavior, and the FDA needs to know we are watching. But, I do like Sasha's idea of responsible confrontation.
  20. Sasha

    Sasha Fine, thank you

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    I'm very glad Picture reminded me of the need to consider that he might be ill! I think it's important to acknowledge that possibility and make it clear that, even if he is unwell, he still needs to step aside for someone able to perform the role. I haven't heard anything back yet, though.

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