The federal advisory committee on chronic fatigue syndrome (CFSAC) meets twice a year to propose recommendations and interview and prod federal officials to do more to meet the enormous needs of the chronic fatigue syndrome community.
Join Phoenix Rising as we cover the two-day event (June 13th, 14th 9am-5pm EST) live with commentary and the opportunity for you to join in and give your impressions and views as the event unfolds.
The meeting provides a rare public view of what the NIH, CDC and FDA and others are doing (or not doing) to provide answers for the 1 million or so Americans with ME/CFS. You’ll see the heads of the CDC and NIH CFS programs talking about their respective programs, you’ll see passionate presentations from advocates seeking more support, you’ll see bureaucrats saying all the right things (but often doing nothing) and this year you’ll see presentations from patient organizations as they make their pitch to be included on the committee next year.
In this meeting we’ll see three new members replace three outstanding past members (Dr. Klimas, Dr. Jason and Dr. Snell) and learn how far the CDC will go in adjusting their ‘Toolkit’ on CFS. This meeting also includes a focus on childhood chronic fatigue syndrome with a presentation from noted Johns Hopkins researcher and physician Dr. Peter Rowe and a panel discussion devoted to figuring out how the federal govt can do more in this area. Look for Speak Up About ME (SUAM) – an organization devoted to supporting young people with ME/CFS – to make as much of a splash as it can as it brings young people from across the country to testify for more federal support.
After the reps of the federal agencies testify about their respective programs look for an intriguing discussion on how to move towards a consensus definition for CFS.
Join in as we analyse and comment on what the biggest and arguably the most important ME/CFS programs on the planet are doing.
Day 1 (13 Jun)
Day 2 (14 Jun)
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