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The May 27-28 CFSAC meeting – A landmark event shared worldwide via video coverage... Now what?

  [ 38 votes ]   [ 2 Comments ]
www.ProHealth.com • June 1, 2009


Real-time video capture of the federal Chronic Fatigue Syndrome Advisory Committee meeting in Washington, DC, May 27 and 28 allowed viewing by ME/CFS patients and advocates worldwide. “Like watching sausage being made,” commented one.

Important Update: the CDC has since fleshed out its draft 5-year CFS research plan (at www.cdc.gov/cfs/draft_5yr_research_plan.htm), which was a central topic in the meeting. And the CFSAC has responded by submitting a terse, strongly worded set of three recommendations to HHS Secretary Kathleen Sebelius.

ME/CFS patients and advocates are urged to submit their comments on the plan/CFSAC recommendations to CDC (CFSResearchPlan@cdc.gov) by the June 30 deadline, or use the template for comments offered by the CFIDS Association.

Video Is Archived Now for General Viewing
Video coverage of the two-day event is archived and available for on-demand viewing at the NIH’s VideoCasting and Podcasting Center (http://videocast.nih.gov/PastEvents.asp). Since the list starts with the most recent, click on page 2 or 3 to find Day 2 (May 28) and Day 1 (May 27). (Again, the NIH will track the number of viewers to determine interest and future decisions on video casting of CFSAC meetings.)

Transcripts and Commentary Emerging Online
Meanwhile, a series of participant & viewer presentation transcripts, summaries, and observations has begun to emerge online. To get a pulse on these, you can visit ProHealth’s ME/CFS Message Board.

See for example:
CFSAC Meeting May 27-28, which includes for example one viewer’s summary of Dr. William Reeves’ 40 minute presentation, including quotes along with some thoughts and comments.

• And CFSAC Meeting Commentary *DAY 2*, which includes excerpts as well as viewers’ comments exchanged “live” during the event. Viewer's commented, for example, on the presentation by Dr. Fred Friedberg (president of the IACFS/ME). According to Dr. Friedberg, in a script now posted on the home page of the IACFS/ME website, "the CDC's draft five year strategic research plan lacks sufficient substance and detail. As such the IACFS/ME is unable to directly respond to or endorse this plan. Rather, we suggest the following course of action." Point 1 being the need for the CDC to identify a new CFS program leader. Dr. Nancy Klimas (past president of the IACFS/ME) offered comments on what the CFS community wants in the research plan.

To Prepare in Advance for Viewing the Archived Videos…
• You will need to have RealPlayer installed, and you can download the latest version in advance at http://videocast.nih.gov/faq/#software

• You can test your computer and network connection at http://videocast.nih.gov/BrowserTest/




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Article Comments Post a Comment

ME/CFS MAGNESIUM?
Posted by: lsobol
Jun 10, 2009
I think that this is just part of the key to the answers sought by the science community to help find a cure for a very multifaceted syndrome; just like fibromyalgia. Seems that a few other simple guidelines pertain to MC/CFS too...such as proper nutrition and exercise guidelines to by implemented by a patient by her caregiver. The full content to discovery will likely pervail when multicausal events transpire in equalibrium.
Reply Reply

Patient's submission on CDC plan
Posted by: QuayMan
Jul 2, 2009
A long submission which includes information on 10 ME/CFS surveys can be read at http://tinyurl.com/TKonCDCsplans1 and http://tinyurl.com/TKonCDCsplans2
Reply Reply
 
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