CFSAC Meeting October 2009
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting 29-30 October 2009
The Chronic Fatigue Syndrome Advisory Committee was established to provide science-based advice and recommendations to the US Secretary of Health and Human Services and the Assistant Secretary for Health on a broad range of issues and topics pertaining to chronic fatigue syndrome (CFS).
Many of the presentations at this meeting related to the newly discovered human retrovirus XMRV, which featured presentations by Dr Daniel Peterson and Dr John Coffin. There was also widespread criticism of the Centres for Disease Control (CDC)'s research policy on ME/CFS, and featured the petition by Tom Kindlon, which called on the CDC to stop using the "empirical" definition (also known as the Reeves 2005 definition) to define Chronic Fatigue Syndrome (CFS) patients in CFS research.
The following presentations, mostly provided by luminescentfeeling, cover virtually all the main highlights of this 2 day meeting. Please click on the links below. Also documented are the written testimonies (in pdf format) which were received prior to the meeting.
Dan Peterson XMRV Presentation (Part 1) (time 10.18)
Dan Peterson XMRV Presentation (Part 2) (time 10.22)
Dan Peterson XMRV Presentation (Part 3) (time 10.45)
Annette Whittemore's Speech on XMRV (time 10.08)
John Coffin XMRV Presentation (Part 1) (time 10.28)
John Coffin XMRV Presentation (Part 2) (time 8.11)
John Coffin XMRV Presentation (Part 3) (time 10.21)
Panel debate XMRV (Part 1) (time 9.59)
Panel Debate XMRV (Part 2) (time 10.21)
Panel Debate XMRV (Part 3) (time 9.48)
Panel Debate XMRV (Part 4) (time 6.16)
Patient Testimony (Robert Miller) (time 5.47)
Patient Testimony (Courtney Alexander) (time 4.36)
Patient Testimony (Dr. Joan Grobstein) (time 5.39)
Patient Testimony (Janice Bell) (time 6.01)
Patient Testimony (Marly Silverman) (time 5.17)
Patient Testimony (time 6.12)
Carer Testimony (Ruth Bell) (time 5.57)
Dr Dharam Ablashi Testimony (time 5.52)
Dr Lee Meisel Testimony (time 5.46)
Patient Testimony (Suzanne Megawitz) (time 4.50)
Patient Testimony (patient on phone) (time 5.08)
Researcher Harnoor Singh Testimony (time 3.03)
Patient Testimony (Laurel Bertrand) (time 5.16)
Patient Testimony (Dr. Laura Black) (time 5.10)
Kenneth Friedman Testimony (time 6.04)
Patient Testimony (Mike Dessin) (time 6.38)
Patient Testimony (time 6.17)
Written Testimony Received Prior to the Meeting Date
Boonie G. Mayer
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.
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 CDC’s 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 CDC’s 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.
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