On June 20th and 21st, the US Department of Health & Human Services (HHS) will host its first Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting of 2018. CFSAC meetings occur twice per year, and the two-day meeting is set in a webinar format, including updates from government agencies like the CDC and NIH, as well as updates from advocacy organizations Simmaron Research, MEAction, and Massachusetts CFIDS, among others. Clinicians and researchers will speak as well, and this meeting will include Dr. Lucinda Bateman of Bateman Horne Center, who will give an update on the Medical Education Work Group, and Dr. Derya Unutmaz of Jackson Labs, giving a Research Update on Adult ME/CFS.
Participants can call in to listen to the webinar and watch a livestream of the meeting, and can ask questions of the speakers. The purpose of the meeting is to cover the recent topics and news surrounding ME/CFS, and determine important next steps in finding the causes of and treatments for this disease.
Click here for the meeting agenda, and for information on calling in to participate.
Advances in ME/CFS 
“The purpose of the meeting is to cover the recent topics and news surrounding ME/CFS, and determine important next steps in finding the causes of and treatments for this disease.”
Actually the purpose of the meeting is to have yet another dog-and-pony show, so that HHS and various government agencies can claim to be working on this horrid disease while actually doing as little as possible. These agencies always claim to be “making progress” and always conclude by imploring us to “be patient”.
Meanwhile, we continue to suffer and die every day, often by our own hands.
Please don’t misunderstand me. I very much appreciate that Dr Unutmaz will be giving up his own time to attend the meeting. I also appreciate that volunteer CFSAC committee members have worked hard to produce their recommendations in spite of knowing in advance that HHS will simply file them away, never to be seen again, until the next meeting, when we all go through the same motions all over again .
Is this really the best we can do?
I dream of the day when CFSAC members take the bit between the teeth, throw out the HHS rule book and script, and really shake things up. I like to imagine the HHS public relations people (sometimes known as “Beltway Bandits”) choking on their coffee and donuts as the CFSAC members call a press conference to present their findings and denounce HHS and the medical industry for their despicable treatment of ME patients.
I recall with much satisfaction a scene from the AIDS documentary “How to Survive a Plague” where an NIH official is burned in effigy. It’s well past time to repeat that act of defiance today. If only I had the strength to get out of bed and take a shower…
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Will the updated CDC “Information for Healthcare Providers” be available online prior to the CFSAC Meeting? At a recent ME conference in London, Dr. Unger said the new content would be available in June 2018.
https://www.cdc.gov/me-cfs/healthcare-providers/index.html
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