CFS Advisory Committee Meeting – Can Advocacy Grow Teeth?

This fall the CFSAC meeting with representatives of HHS to inform and recommend is scheduled for three days – Oct 12-14 in Washington, DC. The entire meeting will be streamed live online (see information HERE) and later archived; and both Day 2 and Day 3 will include an hour for brief ‘public comments’, by phone or the reading of written testimonials. Note that HHS tracks interest in the event based on number of viewers.

BUT, based on the final meeting agenda published Sep 29 (http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20101012_agenda.html), the community “grapevine” is roiling with questions about whether it offers progress for an underserved patient population.

Will we see any reports on how past recommendations are being accomplished? Has/will anything be done to ensure CFS will not be classified as a psychiatric condition in the US? Anything to promote more funding for research/clinical trials addressing ME/CFS as a biological illness, or for centers of excellence? Is there any evidence that HHS Secretary Kathleen Sebelius has even read the recommendations from past meetings?

Just two examples of bloggers' comments so far:

Sep 28: Patient/activist Khaly Castle, in her CFS Untied blog (http://cfsuntied.com), posts “Let’s Do the Time Warp Again… CFSAC Agenda.”

Note: Khaly’s post addressed the ‘draft’ meeting agenda, which did not include the Oct 29 update with the “Science Day” schedule. Read down in the comments under her post to see Dr. Wanda K. Jones’ reassuring response to a couple of Khaly’s concerns, such as the substance of the physical therapy/vocational therapy presentations. (Dr. Jones is the official designated within HHS to preside over the meetings and present a report on the CFSAC's recommendations to Secretary Sebelius.)

Sep 28: Pioneering patient/activist John Herd, in his Herdisms blog (http://johnherd.wordpress.com), posted this commentary – “The CFS Advisory Committee – If we always do what we’ve always done, we will get what we’ve always gotten.”

Advocates may want to send email messages to HHS Secretary Kathleen Sebelius urging her to consider the CFSAC's recommendations, at Kathleen.Sebelius@hhs.gov

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