The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS).
You can learn more about CFSAC by reading the committee charter and reviewing past recommendations the committee has sent to the Secretary of Health and Human Services and the Assistant Secretary for Health. All of this and more is available on their website HERE.
Currently, the CFS Advisory Committee (CFSAC) support team is putting together a list of frequently asked questions to post on its website and anyone is invited to submit questions regarding CFSAC. Transparency and patient input is critical to the success of the committee. It is also important for the designated federal officers to know that the ME/CFS patient community is engaged and listening.
If you have been involved in the past, what do you wish you had known from the start? What, if anything, do you wish you knew concerning the workings of the committee? If you have never been involved before, but might consider engaging in the work of the CFSAC in the future, what would you like to know about it before deciding? All of YOUR questions would make good questions for their FAQ page, in order to engage more patients in the process.
1) What specific new strategies is HHS using to insure that CFSAC input is incorporated into HHS policy and research going forward?
2) How can people with ME/CFS get involved in the CFSAC working groups?
You can submit your questions directly to [email protected] by Friday, March 17th for inclusion in this first document. (No names will be included in the document.)
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) meets 2-3 times each year. Meetings are typically two days in length and cover the most recent and pressing topics surrounding ME/CFS. While attendance in person is welcomed, patients and other stakeholders can call in from anywhere. At each meeting there is an opportunity for patients and others to make public comment on any area related to ME/CFS that they choose. The most recent meeting was held on January 12-13, 2017; complete transcript and recording can be accessed HERE, as well as information about the rest of the meetings slated for 2017. Anyone that is interested in ME/CFS advocacy on a federal level, or the work of the committee is encouraged to participate.
*thanks to #MEAction for their sample questions