1. Patients launch $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!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

Cfsac day two

Discussion in 'Action Alerts and Advocacy' started by George, Oct 13, 2010.

  1. OneWaySurvival

    OneWaySurvival

    Messages:
    90
    Likes:
    91
    USA
    Transcript of Dr. Koh's opening remarks

    When the video cut in right as he was sitting down, I was ticked off that I missed his speech, then I hit the "CC" button and found his remarks at the top. I did the best I could to copy and paste, but the Closed Captioning updates so fast that it keeps scrolling down and I lose the words that were copied. Anyway, I think I got everything but maybe the last couple lines from his talk:

    10/13/10
    CHRONIC FATIGUE SYNDROME MEETING WITH START SOON.........
    Dr. Koh (Assistant Secretary of Health)

    "I am one who is charged with passing on those recommendations to the top leadership including the secretary and want to make sure we are making progress in as many areas as possible. The scientific conversations and discussions on chronic fatigue syndrome continue to progress and I know NIH had their first workshop on XMRV last month. Many issues to discuss about XMRV. Again many questions to be sorted out. As that scientific conversation goes on there are equally important questions about disability coverage.

    Today there will be a very good and exlis sit [explicit?] conversations about denial of disability and opening conversations with the committee on the new affordable care act and how it acts on care, testing, and treatment issues. These are all very, very important for us at the department and important to the community, to the country, we are pleased to host these meetings on behalf of the nation.

    I am also pleased that we have as Dr Jones has noted some 3 hours of public testimony allocated. We look forward to hearing from those commenting and answers to the important questions raised on CFS.

    In closing, I want to thank you, this is an important time to address those key issues. We are also doing this work in the context of implementation of the affordable care act that you are going to hear about in this meeting."


    The chair, Christopher Snell, admitted sheepishly that he has not followed-up with Dr. Koh during the past 6 months since the last CFSAC meeting. He will "try to do a bit better" at talking with Dr. Koh and finding out which CFSAC recommendations are going somewhere. He thinks "talking a bit more could be helpful." Well, DUH! C'mon people! We're dying a slow excruciating death here!
     
  2. RivkaRivka

    RivkaRivka Senior Member

    Messages:
    324
    Likes:
    119
    hey, folks, keep the faxes and calls coming! bob and others who are at the CFSAC meeting in Wash DC are telling us that the campaign is having a big impact, and we'll hear more about that today during Bob's live testimony. sending emails, too, are great! but they are less powerful (but still helpful) than calling and faxing. if you call, don't let them send you off elsewhere (like the Office of Research on Women's Health) -- make sure yr message is left with the exact office you are calling. if you are motivated, tell them your story of illness and ask our key question, "what have you done for cfs today? patients and their families are waiting!" THE CAMPAIGN IS WORKING!!! DON'T STOP NOW. -- in ME/CFS solidarity, Rivka


    On the heels of the September 7, 2010, historic NIH meeting with ME/CFS patients and their families, now is the time to let our federal health agencies know we are expecting big changes. The more they hear from us now, the more they'll listen to us next time we meet. Our "Time for Action" campaign is advocacy made easy -- yet it will have a huge impact. We ask patients, their families and friends to email, call and/or fax NIH Director Collins and NIAID Director Fauci with this simple question every day, starting today.

    (Please click "Add Cc" in your email and put Bob Millers email address - hebs1reel@yahoo.com- in the Cc: box of your email - so he can keep track of how many emails are sent. )

    Dear Directors Collins and Fauci,

    What have you done for ME/CFS today? Patients and their families are waiting.

    Name: John Doe (or John)
    Location: Miami, FL
    Time: Sick 12 years

    Contact info:

    1) National Institutes of Health
    Director Francis Collins
    Email: collinsf@od.nih.gov
    Cc to: hebs1reel@yahoo.com
    Phone: 301-496-2433
    Fax: 301-402-2700

    2) National Institutes of Allergy and Infectious Disease
    Director Anthony Fauci
    Email: afauci@niaid.nih.gov
    Cc to: hebs1reel@yahoo.com
    Phone: 301-496-2263
    Fax: 301-402-3573

    For more Inspiration Check Out Our "How To" video:

    Organizers: Robert Miller, Rivka Solomon, Charlotte von Salis
    Contact: bobmiller42@msn.com
     
  3. RivkaRivka

    RivkaRivka Senior Member

    Messages:
    324
    Likes:
    119
    very helpful. thank you for this!! may i post this elsewhere on other forums?

     
  4. OneWaySurvival

    OneWaySurvival

    Messages:
    90
    Likes:
    91
    USA
    Of course, Rivka. Maybe we need to add Christopher Snell to the campaign list so he'll actually be talking with Koh and Sebelius! I figured he was. Sheesh.
     
  5. RivkaRivka

    RivkaRivka Senior Member

    Messages:
    324
    Likes:
    119
    do people see the patients and advocates sitting in the front row in the audience, right behind the presenter? they are wearing the t-shirts bob made that say (in neon green) "NIH, WHAT HAVE YOU DONE FOR ME/CFS TODAY?"
     
  6. RivkaRivka

    RivkaRivka Senior Member

    Messages:
    324
    Likes:
    119
    good idea. not sure wei can make it part of the campaign, as the postings about the campaign are all out and about online, everywhere. but WE can send him emails, us folks here. do you have his email?
     
  7. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    I like what Dr. Lange said about using the CDC website as a way of disseminating information on cognitive impairment.
     
  8. Hope123

    Hope123 Senior Member

    Messages:
    1,171
    Likes:
    686
    Excellent talk and Q and A by Dr. Gudrun Lange.

    Keep watching everyone! Dr. Jones mentioned at the beginning that CFSAC videocasts are #35 of most-viewed videos on all advisory committee websites -- over 10,000 views over a the last few months.
     
  9. RivkaRivka

    RivkaRivka Senior Member

    Messages:
    324
    Likes:
    119
    this is the line up for public comments today. 5 min each comment.

    Wednesday, October 13, 2010

    * Friedberg, Fred
    * Grobstein, Joan
    * Johnson, Cort
    * Hennessey, Thomas
    * Shannon, Meghan
    * McGrory Richardson, Nancy
    * Adonailo, David
    * Lopez-Majano, Denise
    * Miller, Robert
    * Dessin, Mike
    * Schweitzer, Mary
    * Silverman, Marly
    * Geraci, Carol
    * Baker, Keith
    * Fero, Pat
    * Magowitz, Susan
     
  10. Sasha

    Sasha Fine, thank you

    Messages:
    8,774
    Likes:
    8,157
    UK
    Hi OWS - thanks very much indeed for this info - here's a lower case version of Dr Koh's speech (done in Word using the formatting tools) for those who find caps hard to read (we use the shape of words to read and so when everything is in caps, it's more effort).

    Please feel free to cut and paste it into your original post for those starting the thread at the beginning! Here it is:

    I am one who is charged with passing on those recommendations to the top leadership including the secretary and want to make sure we are making progress in as many areas as possible. The scientific conversations and discussions on chronic fatigue syndrome continue to progress and I know NIH had their first workshop on XMRV last month. Many issues to discuss about XMRV. Again many questions to be sorted out. As that scientific conversation goes on there are equally important questions about disability coverage.

    Today there will be a very good and exlis sit [explicit?] conversations about denial of disability and opening conversations with the committee on the new affordable care act and how it acts on care, testing, and treatment issues. These are all very, very important for us at the department and important to the community, to the country, we are pleased to host these meetings on behalf of the nation.

    I am also pleased that we have as Dr Jones has noted some 3 hours of public testimony allocated. We look forward to hearing from those commenting and answers to the important questions raised on CFS.

    In closing, I want to thank you, this is an important time to address those key issues. We are also doing this work in the context of implementation of the affordable care act that you are going to hear about in this meeting.
     
  11. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    Did Cort give up his spot to Lori???

    Man she was fast but incredible presentation.
     
  12. JAXintheCity

    JAXintheCity

    Messages:
    97
    Likes:
    0
    Philadelphia, PA
    Tom is awesome! I love what he says! I wish they wouldn't have cut him off... boo! I missed the previous presenter, though. :(
     
  13. RivkaRivka

    RivkaRivka Senior Member

    Messages:
    324
    Likes:
    119
    lunch break. what time do they start up again?
     
  14. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    They resume 1PM EDT
     
  15. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    O.K. in May there were like 5 people on the committee and they had to take like two areas to work on in their sub committee's!!!! Maybe I'm just Doh! but who are all these people???!!!! I mean WTF were did they all come from??? Did I miss something somewhere????? I'm sooooo confused.
     
  16. rescindinc

    rescindinc

    Messages:
    15
    Likes:
    0
    boca raton, FL
    Hi CFSAC ChairmanChristopher Snell's private email address is csnell@pacific.edu. he is a good guy, and he believes that we have biological damage to our autonomic nervous system. i had that in my speech, but was cut off early due to some miscommunication about time and signs and starting and stopping. i was the first telephone person to speak and they told me to mute the conference,
    and i was on a 15 second tape delay...(i woneder why???) longer report coming. But, this guy is on our side. so please be polite but persistent with him! thanks. TMH
     
  17. OneWaySurvival

    OneWaySurvival

    Messages:
    90
    Likes:
    91
    USA
    TMH,
    Your testimony was brilliant. Direct, passionate, authentic, experienced and hopefully as motivating to them as it was moving for me to hear. I agree wholeheartedly with your words and the tone with which you spoke. Thanks for saying these important things on all our behalfs.

    I also found the testimony of the woman with two teenage sons to be quite compelling. Great sense of humor to go along with the gravity of what we all experience.

    Thank you Cort and everyone else who might read this that is giving testimony this week. We're all indebted to you.

    Sasha, thanks for changing the formatting to lower caps for Koh's remarks. I've updated my post with that. Please everyone keep in mind this was a loose transcription done by the Closed Captioning service, not me. But I assume it captures the gist, even though I found nothing particularly earth-shaking there. Just the fact he came back to another meeting is a good sign though. TMH, I agree that Snell is a good guy and doing important work at his Pacific Lab that is helping to show abnormalities after exercise, etc. I do think we need to politely follow-up with him every few weeks to make sure he is keeping the pressure on HHS to see the CFSAC agenda implemented.
     
  18. rescindinc

    rescindinc

    Messages:
    15
    Likes:
    0
    boca raton, FL
    to : one way survival! Yes, AMEN to that ! i agree completely. that is why i say "polite, but persistent!" TMH
     
  19. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    Does anyone happen to be saving the slides to the presentations (I've gotten a few) or will they be available later?
     
  20. Hope123

    Hope123 Senior Member

    Messages:
    1,171
    Likes:
    686
    The slides will be available later per Dr. Snell's comment at the end of yesterday's talk from what I know.
     

See more popular forum discussions.

Share This Page