Wednesday, September 12, 2018

URGENT: Tell Your Reps to Reinstate CFSAC

A week ago, the U.S. Department of Health and Human Services made a startling and unexpected announcement: the charter for the CFS Advisory Committee had expired and would not be renewed. This was news to EVERYONE, including the committee's Chairman, Dr. Faith Newton (a close friend of mine and educational specialist whose son has ME/CFS) and the rest of the committee members. CFSAC had been in place since 2002, and its charter had been renewed every two years, as required, since then.

Further investigation revealed that CFSAC was the ONLY HHS Advisory Committee shut down, and its operating costs were less than $200k per year - this was not part of some big cost-cutting move. Pushed for a reason, the next day the HHS added that "The Department feels that the committee accomplished the duties outlined in its charter." That statement is so far from true as to be laughable. All members of the committee agree that it had many open items that either hadn't even been started yet or were in process.

For more details and history on CFSAC and this sudden closure, see Jennie Spotila's blog post at Occupy M.E., Rest in Power, CFSAC. As always, Jennie has explained it all clearly and thoroughly.

What Can You Do?
So glad you asked! Solve ME/CFS has put together a quick and simple form for writing to your Congressional reps to ask them to reinstate the committee - I did it earlier this week, and it only takes a few moments.  All the pertinent information is already written for you, though you can add a brief description about your personal situation if you like.

This is such an important issue - without that committee ME/CFS patients, doctors, caregivers, and researchers have no voice in how the HHS approaches ME/CFS.

Many of us - including myself and my entire family - have participated in past CFSAC meetings and given testimony to the committee. This meeting summary from 2011 includes a photo of the teens that came to the meeting and a video of our own testimony on pediatric ME/CFS and will give you an idea of the important role this committee played.

PLEASE, act today and fill in that quick form to let your Senators and Representatives know how important CFSAC is to us.

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