I'm sure it was something close!
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Actually just listening to Dr Joan Grobstein's excellent submission and she mentions him.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.Min said: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'.
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?
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?
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
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.)
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.
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.
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.
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.