UPDATE: 888 viewers of CFSAC meeting

Discussion in 'Fibromyalgia Main Forum' started by denis321, Oct 29, 2009.

  1. denis321

    denis321 New Member

    per Dr. Jones, who runs the meeting.

    This is out of a total of 455 people using the NIH videocast site at noon.

    In other words, almost 90% of users were watching the CFSAC meeting.

    This is VERY good.

    Let's try for 500 tomorrow. Keep watching.......they're keeping count.
    [This Message was Edited on 10/30/2009]
  2. hensue

    hensue New Member

    I apologized for saying he looked like he was sleeping. I did not know he had narcolepsy and Dr Bell had diagnosed him. I thought Dr Bell was awesome.

    Do you think anything will come of this?

    Who do you think will show and talk about the blood supply?

  3. simka

    simka New Member

    Though I didn't get to view the entire meeting, the parts I saw were well worthwhile, including most of Dr. Peterson's presentation.

    Some very good public comments. Dr. Joan Grobstein (spelling???) has had CFS since 1999. She really attacked the approach the CDC has taken and had some very good specific recommendations as to what DHHS needs to do to help fix this.

    Dr. Fred Friedberg, president of IACFS/ME, was there. He reinforced the need for change in leadership at the CDC, and he read some brief statements from a couple of other scientists. One of them (maybe Gudrun Lange - spelling??? or I might have this confused) had been on the Review Panel of the CDC's program, and was very critical of what the CDC had not done in terms of acting on the Panel's recommendation, and also it's lack of attention to looking at H1N1 virus and possible resulting CFS. Dr. Freidberg also asked that the CFSAC set aside time to have CFS biomedical scientists address the committee (separate I think from the general public comment time that is set aside), and allow non-US scientistst to speak. How wonderful that there were actually multiple scientists that wanted to address the CFSAC - but when they contacted the CFSAC 3 weeks ago to get a slot, they were wait-listed, so most couldn't speak.

    Cort Johnson, who does Phoenix Rising and aboutmecfs.org website, was there. He was going to give up his speaking time, but that might not have helped get scientists their time. Instead, he used his time to read a statement from Dr. Charles Lapp, who has a CFS clinic in North Carolina and is very active.

    In the morning, a last minute addition to the agenda was Dr. Coffin (John?) from Tufts. He was an author of the companion article in Science on XMRV. He came across as a highly knowledgeable, hard core scientist, very impressed by the results on XMRV. He said virologists are plain excited by the results, and they don't care about the name of CFS or whatever the reputation CFS may have - they just are intrigued by the results.

    The scientific community represented by the IACFS/ME appears to be coming out in force - this was in process even before XMRV. This is important. And now we have prominent non-CFS researchers actually working a last-minute CFSAC meeting into their schedule.

    We could have imagined this before - but who thought it would happen this year?

    I really appreciate the patients, family members, and scientists and clinicians who are attending this meeting, submitting statements, and logging in to view. Let's make it to 500 viewers tomorrow!

    [This Message was Edited on 10/29/2009]
  4. denis321

    denis321 New Member

    was 888 per Dr. Jones!

    This is a GREAT number! Keep watching..............YOU can make a difference!

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