The spring meeting of the US CFS Advisory Committee (CFSAC) will take place on Tuesday May 17 and Wednesday May 18 from noon to 5pm (Eastern Time) and will be both livestreamed and available to listen to by telephone.
The committee provides advice and recommendations to the Secretary of Health and Human Services (HHS) on issues related to ME/CFS but has been a focus of enormous frustration to patients over the years because of the HHS’s failure to act on its recommendations.
Activist Jennie Spotila currently keeps a weekly log of the National Institutes of Health’s (NIH’s) failure to act on CFSAC’s longstanding advice to issue calls for grant applications (known as RFAs, or Requests for Funding Applications) for ME/CFS-specific projects, and the Solve ME/CFS Initiative maintains a “report card” — currently showing mostly Cs, Ds and Fs —grading the HHS’s response to CFSAC’s various recommendations.
However, the NIH has shown recent, dramatic changes in their willingness to engage with the disease, signaled at the August 2015 CFSAC meeting by the presence of Dr. Vicky Whittemore from the National Institute of Neurological Diseases and Stroke — the first time that the NIH had sent a representative from one of its institutes.
Soon after, the NIH announced a major intramural, biomedical study of ME/CFS and promised RFAs, which may indicate a shift in what to expect in response to CFSAC recommendations. The NIH has already revised its past responses to a number of CFSAC proposals.
The meeting will be chaired by Dr Susan Levine and will include reports from CFSAC’s IOM/P2P Working Group and ME/CFS Centers of Excellence Working Group, as well as updates from agencies including the NIH, CDC, AHRQ and FDA, and two sessions for testimony and comment from patients.
The agenda is here. Instructions for web and phone access to the meeting are here: note that web access involves downloading some software beforehand, which takes several minutes. Videos of CFSAC meetings are usually posted on YouTube.
Welcome to June’s #FacetsOfME! Facets of ME is an educational feature where we dive into a particular aspect (or facet) of ME and explore it more in depth. This month we are focusing on temperature dysregulation- heat and cold intolerance. It is surprising how difficult this symptom can be to manage until you experience it.