CCFS Advisory Committee Meeting - Will be Webcast Live

[anne]

I'm sure it was something close!

 

[Dolphin]

Good to hear the UK's Professor of Psychiatry Peter White criticised - he has taken most of the UK taxayer's research funding into ME/CFS whilst calling it an 'abnormal illness belief'.

Anyone know who said this? This was posted around just after the end of the first set of testimonies. I'd love to hear who said it and what they said. I have the recordings but don't have the time or energy to listen to them all.

Actually just listening to Dr Joan Grobstein's excellent submission and she mentions him.

 

[leelaplay]

CFSAC recommendations

Does someone have a list of the recommendations they made? I caught a little of it and Rebecca seemed to be making a recommendation to can Reeves. Did that make it on?

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

 

[Cort]

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.

 

[Frank]

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?

 

[leelaplay]

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?

hi s5044726 you were joking, right??? (or for you Canadians, eh?)

the webcasts of both days are up and running

if

 

[Frank]

No at the time i posted it, the webcasts weren't available.
I don't understand your humour I'm only Belgain(Mid-Europe)

 

[leelaplay]

I'm only Belgain(Mid-Europe)

ah - that explains it

if

 

[lucysun]

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

 

[Dolphin]

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

Well done, Islandfinn.

This is what the CAA wrote on it:

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

Committee Recommendations

In the last session of the day, Committee members put forward, debated, and revised several formal recommendations to the Secretary of Health. These four passed by unanimous votes. (Note: The wording of these recommendations is subject to change, as editing of final recommendations often takes place via email among Committee members. They did not project the written recommendations on the screen, making it more challenging to document the language voted upon.)

Recommendation 1:
The CFSAC renews its recommendation to the Secretary to establish Centers of Excellence for CFS that would effectively utilize state of the art knowledge concerning the diagnosis, clinical management, treatment and clinical research.

Recommendation 2:
The CFSAC renews its recommendation to the Secretary, as submitted 6 months ago, to establish progressive leadership at the CDC. It is disappointed that no response has been made to the earlier recommendation and it is interested in getting feedback, especially in light of the comments made to the New York Times by Dr. Reeves that reflect an inappropriate bias and undermine others CFS research.

Recommendation 3:
The CFSAC objects to CDCs continued use of the inadequate and inappropriate 2005 empiric research definition for CFS. It recommends that CDC abandon the empiric case definition and the fundamentally incorrect conceptualization of chronic unwellness as being equivalent to CFS incorrect.

Recommendation 4:
The CFSAC has significant concerns about the CDCs five-year plan. In particular, the priorities articulated in its recommendation of May 2009 have not been adequately captured in the latest draft. The CFSAC renews its recommendation that CDC prioritize: identification of biomarkers and (viral) etiology of CFS; partnership with organizations representing CFS scientific expertise to create guidelines for adult and pediatric management; provide web based guidelines for CFS management given our current state of knowledge and expert opinion; and provide comprehensive information about CFS in partnership with CFS experts to the scientific community, medical and mental health providers, educational institutions and the public for both adult and pediatric CFS through DHHS resources.

Dr. Miller of CDC was asked to comment on the recommendations and said only that he would take the points of discussion and outcomes back to the program and the center leadership.