1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Science to Patients: Talking ME, Exercise and the Mitochondria - with Dr Charles Shepherd
The latest video release from the Dutch group ME/cvs Vereniging, with Dr Charles Shepherd from the UK ME Association, and announcing a live chat session to be held Thursday, April 10, 2014...
Discuss the article on the Forums.

From the front row of the ME/CFS AC Meeting

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

  1. BEG

    BEG Senior Member

    Messages:
    940
    Likes:
    160
    Southeast US
    WE MUST CALL FOR THE RESIGNATION OF MARC W. CAVAILLE-COLL, MD, PHD, DIVISION OF SPECIAL PATHOGENS AND IMMUNOLOGIC DRUG PRODUCTS OF THE FDA.

    I personally watched him sleep through Day 1, the Science Day when Nancy Klimas, MD. and others gave superb talks on the specific biomarkers of our disease.

    When it's time for "The FDA Guy" to speak, he spews his usual garbage, including his, by now, familiar and inconsequential Ampligen speech, and also says, "there are no specific biomarkers."

    WE'VE GOT TO GET RID OF THIS GUY. He's been sleeping in that chair far too long at the expense of, like Bob says, "the taxpayers," and at our expense.

    Everyone, it's now time to ACT UP and ACT OUT. They need to hear us. We need to be loud, vocal, and up close and personal.


    Will you join me in calling for his removal?
  2. Cloud

    Cloud Guest

    Anyone get him on tape sleeping? Send that to his superior over at the FDA.
  3. leela

    leela Slow But Hopeful

    Messages:
    2,291
    Likes:
    2,393
    Couchland, USA
    Great idea Cloud! They did film it.....
  4. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    115
    USA
    FDA Asleep at the Switch

    I'm with you BE-G.

    Hopefully we can find that video. If not perhaps you can describe the scene in a blog post so we can link emails, tweets and other blog posts to the description.
  5. ahimsa

    ahimsa Senior Member

    Messages:
    960
    Likes:
    705
    Oregon, USA
    Wow, I guess all those complicated immune system biomarkers are way too boring for someone who doesn't actually have the disease, hmmm? I try not to get snarky on this forum but this is pretty insulting to those of us who have been sick for so long and want scientists to treat this disease as a serious problem, not an annoying inconvenience to their busy schedules.

    Getting back to a more serious tone, it's a disgrace that he would attend the meeting only to sleep through it. Whether he was actually dozing or just "resting his eyes" does not matter -- either way, it is very rude.

    This type of behavior, at the very least, calls for a public written apology to all the speakers, to those in attendance, and to all ME/CFS patients around the world. Removal would be warranted if there is no apology.
  6. BEG

    BEG Senior Member

    Messages:
    940
    Likes:
    160
    Southeast US
    Otis, good one, "asleep at the switch." Ahimsa, public apology for sure.

    I've seen enough sleepers in church and classrooms to know when someone jerks his head upright, he's been asleep. Here is a look-up chart for any employee of HHS.

    http://directory.psc.gov/hhsdir/eeKey.asp?Key=31993

    I believe this is Cavaille's supervisor but won't know for sure until I call tomorrow.

    I've seen the FDA guy asleep on previous webinars but wasn't aware it's this bad.

    I saw SO MUCH at this meeting. Many of my previous notions have been turned upside down. One positive was the frank interchange among the committee members. Many members jumped on Marc until Nancy said, "I feel poor Marc is being hammered here." As well he should. But that was enough to stop the dialogue. I think we would have committee members behind us if we tried to get Marc removed.
  7. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    115
    USA
    I think demanding his removal sends the right message. We're not going to accept people who come to catch up on their sleep. I just about punched my computer monitor when he suggested the committee members look at the website rather than bothering to make an introduction to the appropriate contacts. He basically said call 411, I'm not here to help you. What an a$$.

    BE-G, I would love to get your insights on the other aspects of the CFSAC when you feel up to it.

    Thank you for making us aware that this man's disinterest spans from his thinly veiled "I'm not here to help you, just to report back what happened here (when I was awake)" to "I don't give a damn about the real work being done here, I'll have a snooze while outstanding information is being by one of the best clinicians/researchers in the world".

    Arrrrrrgh.
  8. Sherby

    Sherby Sherby

    Messages:
    91
    Likes:
    0
    London UK
    The powers to be put incompetent people in place for one good reason.
    And i don't have to spell it out.
  9. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    2
    USA!
    SHERBY: You nailed that one big time!!! They put the losers in so that things get messed up and it has worked just so well for 30 years. Time to give this guy the old kick out the door...
    Great catch BEG! I did hit the FDA with this obervation. Beat on them. Beat on them all when you - THE TAXPAYER - sees something YOU don't like.
    What about that drivel of a "researcher" Elizabeth Unger? Don't like her pat comments? Hit the CDC and tell them this was BS over and over.
    If we don't speak UP every single time someone says or does anything that we don't like, that damages us further, they will keep it up and there will be no money for real research and clinical trials NOW.
    I see NO money coming from anywhere - do you??? It's the money that speaks, not the idiots trying to shut us up.
    Beat on them all. They work for you.
    Again - Good catch BEG!!!!!!!
  10. BEG

    BEG Senior Member

    Messages:
    940
    Likes:
    160
    Southeast US
    Hi Sherby! You are so right. And Otis, yes, I plan to write that blog because some of my prior impressions of people were shaken to the core.

    Since I didn't have a computer all day, I spent the morning on the phone.

    Our rep. from the FDA is, as you know, Marc W. Cavaille (pronounced ka vah' yay), phone 301-796-0689 fax 301-796-9880. His e-mail is marc.cavaillecoll@fda.hhs.gov

    Cavaille's supervisor is Renata Albrecht, phone 301-796-1600; fax 301-796-9881; e-mail renata.albrecht@fda.hhs.gov

    Albrecht's supervisor is Edward Cox. E-mail: edward.cox@fda.hhs.gov


    Cavaille didn't return my call today. Albrecht is out for the week.

    PLEASE EVERYONE, CALL, FAX, E-MAIL and demand his removal on the grounds of "dereliction of duty." He sleeps during our meetings!! We need people sympathetic to our disease and cause, which is to get well. Add this one to your NIH daily e-mails.
  11. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    115
    USA
    Here's my first email - copied up the chain:

    Dear Mr. Cavaille,

    You were seen sleeping for extended periods at last week’s CFSAC meeting including the duration of Dr. Klimas’ immunological presentation. You sir have done the 1-4 million people very ill with this disease a great disservice, not to mention publically displayed a great deal of disrespect, and should be replaced on the CFSAC with a more interested and compassionate person.

    As a CFS patient ill for 30 years and taxpayer (until I was no longer able to work) I also call for your dismissal from the FDA due to dereliction of duty.

    You also proved yourself a rather poor ambassador of the FDA when you declined to make introductions to the appropriate colleagues at the FDA - with respect to drug approval protocols - and instead referred the CFSAC members making those requests to the FDA website. Why exactly were you doing there? This is all on recorded, publically available video. I think your display of indifference should make an excellent YouTube video. I doubt, however, that your superiors would agree.

    An enraged ME/CFS patient,
  12. leela

    leela Slow But Hopeful

    Messages:
    2,291
    Likes:
    2,393
    Couchland, USA
    :victory:Great letter, Otis!
  13. BEG

    BEG Senior Member

    Messages:
    940
    Likes:
    160
    Southeast US

    ditto, Otis. I will be hitting them today since I have my computer.
  14. BEG

    BEG Senior Member

    Messages:
    940
    Likes:
    160
    Southeast US
    I'm e-mailing today and everyday until I get a response. PLEASE JOIN ME. You need only say that you saw him sleeping on the webcast through pertinent discusssions and ask him to remove himself from the committee. HE MUST BE REPLACED.


    10/19/10

    Dear Mr.Cavaille-Coll,

    I recently attended the CFSAC meeting Oct. 12-14. I sat in the front row of the audience area and had a clear view of you --- sleeping --- through some of the most pertinent testimony.

    Ive watched you sleep on a number of occasions through the webinars, but I didnt realize the extent of the problem until I personally viewed the panel members for all 3 days. It is my opinion that you are asleep 25% - 30% of the time.

    I heard you tell the committee that a drug is more apt to be approved depending on the severity of the illness. How can you possibly know the severity of CFS if you are sleeping through scientific information and other testimony? Furthermore, I dont really know how much more severe a disease can get than ME/CFS.

    Therefore, I ask sincerely that you resign from the CFS Committee and allow another FDA representative fill your vacancy. I am hopeful the next person will stay awake, take an interest, and make a difference.


    Sincerely,

    (Name)


    cc: Renata Albrecht

    cc: Edward Cox
  15. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    115
    USA
    Bravo! Great letter!!!
  16. Sasha

    Sasha Fine, thank you

    Messages:
    6,999
    Likes:
    4,566
    UK
    Is the CFSAC meeting going to be on YouTube? Will it show this guy asleep or is he tucked away somewhere?

    Really disgraceful. I wonder if the other CFSAC members were aware and are petitioning for his removal.
  17. BEG

    BEG Senior Member

    Messages:
    940
    Likes:
    160
    Southeast US
    Sasha, The committee members are placed in a horseshoe shape. Each committee member can view other committee members without difficulty. They have seen him sleep from the get-go and haven't done anything about it, except this time they really questioned him hard. It's my guess that they are open now for his removal. Probably they should be e-mailed, too.

    Does anyone have the committee members e-mails? The federal reps, of course, can be found on-line. Wanda Jones for sure should be notified.
  18. BEG

    BEG Senior Member

    Messages:
    940
    Likes:
    160
    Southeast US
    Thanks, Otis.
  19. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    2
    USA!
    Bravo BEG!

    You might also ask him if HE has Chronic Fatigue Syndrome too. Why the sleeping every year? Is he sick or just bored? Maybe CFS might account for making stupid comments given the damage to our brains, etc....

    Might toss in the statement that he should be seen by a doctor and CFS ruled out for sleeping through his employment-required meetings. He might also have VIPDx test him for XMRV, etc...

    Always fun to play with the moronic Federal employees --- Says the former Federal government contractor!
  20. dannybex

    dannybex Senior Member

    Messages:
    2,111
    Likes:
    476
    Seattle

See more popular forum discussions.

Share This Page