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!
Phoenix Rising Adds Two New Board Members
Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors.
Discuss the article on the Forums.

CCFS Advisory Committee Meeting - Will be Webcast Live

Discussion in 'General ME/CFS News' started by Summer, Oct 20, 2009.

  1. anne

    anne Guest

    I'm sure it was something close!
  2. Dolphin

    Dolphin Senior Member

    Messages:
    6,717
    Likes:
    5,564
    Actually just listening to Dr Joan Grobstein's excellent submission and she mentions him.
  3. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    CFSAC recommendations

    hi Anne

    my notes are almost illegible, but from what I can decipher and remember, the recommendations are something like as follows:

    1. for the Chair position to become 4 years as will help with continuity

    2. to start having a Chair-elect (they said for the whole term, but usually it's just the last year.

    3. for the Secretary that the CFSAC reports to - public health?? to advise the CDC that

    a) the committee is resubmitting its recommendation of 6 months ago for a change in leadership of the CDC, and to provide rationale for the secretary - esp Reeves comments in the NYT of predicting can't duplicate results + tomk's petition

    b) the CDC must abandon the current "emperical definition of CFS and replace it with the Canadian definition and/or the Fukuda 2003 (not 98 or 05) (which interestingly enough Reeves helped author!!??) and also include the rationale - scientific reasons (ie doesn't include the depressed......and global acceptance and usage)

    c) that the 5 year plan should be reviewed by experts and amended to show an emphasis on viral research, Centers of Excellence, diagnosis and treatment, and care provider training and inclusion in med school curricula and board exams
  4. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    Wanda Jones can be tough but she is on the ball. Jean Harrison got the video request in but it was ignored until Wanda came on board.

    She's really changed the CFSAC; all those recommendations over the years - she's put them in a packet and noted whether any of them have been responded to. She's put all the public comments on this site. She's gotten the CFSAC much better organized.

    I asked Kim McCleary about her. She said that she comes from the ORWH and they tried to get her in there because they thought she was so effective. She's been in women's research for quite a while - not historically an easy task in that male dominated world. I think she's a tough and very capable survivor.

    She'll always seems to raise a couple sparks at each meeting but I get the feeling that she's really behind us. She tends to be quite dry but I thought I know noticed some enthusiasm - a little smile - creeping through there. Every time someone does something like put a video crew on an event - the feds apparently watch it very carefully. They take stats on everything! They monitor how many people attend these meetings. Its one of the ways they determine whether they are effective. So she put her butt on the line when she moved to the events into the big room and put a three-person video camera crew - with big cameras and banks of lights - on the event. I think she's probably quite relieved that it got the hits it did. They they will no doubt be overjoyed that its quickly showing up on YouTube - that's what they want - they want to show that it has an impact and it did. She thanked everybody for getting the word out.

    She does deserve a thank you.
  5. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    7
    Europe
    Cort, I've read somewhere, probably the cfsac website, that the webcast will be available in the archive at http://videocast.nih.gov/PastEvents.asp
    But now, i already see events of 2 november on there. So will it still become available one of the next days or is someone stopping it from becoming available? :(
  6. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    hi s5044726 you were joking, right??? (or for you Canadians, eh?)

    the webcasts of both days are up and running

    if:)
  7. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    7
    Europe
    No at the time i posted it, the webcasts weren't available.
    I don't understand your humour :D I'm only Belgain(Mid-Europe) ;)
  8. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    ah - that explains it:p

    if:)
  9. lucysun

    lucysun

    Messages:
    17
    Likes:
    0
    Video is Availble - links within

    Air date: Thursday, October 29, 2009, 9:00:00 AM
    Time displayed is Eastern Time, Washington DC Local
    Category: Advisory Boards
    Description: The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS).

    Day 1
    http://videocast.nih.gov/Summary.asp?File=15408

    Day2
    http://videocast.nih.gov/Summary.asp?File=15410
  10. Dolphin

    Dolphin Senior Member

    Messages:
    6,717
    Likes:
    5,564
    Well done, Islandfinn.

    This is what the CAA wrote on it:

    http://www.cfids.org/cfidslink/2009/110401.asp

See more popular forum discussions.

Share This Page