In addition, although we have an Advisory Committee within HHS (Health & Human Services, the parent group to NIH), the CFS Advisory Committee or CFSAC, with some excellent, high-profile ME/CFS researchers and clinicians, nothing ever seems to come from their recommendations to HHS. It seems like no one has been listening.
So many patients have given up on the government and are bitter and resentful (with good reason!). But we really can't afford to give up because the NIH remains the top medical research resource in the US, in terms of both money and power. If we ever hope to get ME/CFS understood and taken seriously by the mainstream medical community, with real treatment options widely available, then we need NIH behind us.
Finally, there are some reasons for cautious optimism, some recent changes that give us hope for a better future:
- After the IOM Report in 2015, the Solve ME/CFS Initiative organized a congressional briefing, attended by congressional representatives, reporters, government officials, and 300 live webcast viewers.
- In 2015, a nationwide working group was formed, headed by Charmian Proskauer of the Massachusetts CFIDS/ME & FM Association, to collaborate on policy changes in government. This working group also joined with the newly formed #MEAction initiative. In December 2015, this large working group issued a joint statement cosigned by 23 organizations and advocates.
- In February 2016, that new coalition put their words into action in both meetings and letters to congressional members to save our measly $5 million in NIH funding, which was completely missing from the proposed NIH budget. This was critical, since without a line item in the NIH budget, it would have been very difficult to get ME/CFS back into it in future years
- In August 2016, a group of ME/CFS advocates met with Karen DeSalvo, the acting assistant secretary for health - the highest-ranking meeting with HHS officials in recent history. A second meeting will take place in October 2016.
And just this month, the charter for CFSAC was renewed with some significant changes:
- The charter includes a new responsibility for the committee to include "strategies to insure that input from ME/CFS patients and caregivers is incorporated into HHS policy and research." This will help patients' voices to be heard and acted on.
- Another new item in the revised charter: "The Assistant to the Secretary of Health shall be given the responsibility to coordinate and monitor the implementation of those recommendations adopted by the Secretary." This is significant since the CFSAC's recommendations have gone nowhere in the past - now, someone is responsible.
- Voting members of CFSAC have been increased from 11 to 13, including 3 who are ME/CFS patients or caregivers (up from 1 previously).
- Two non-HHS members have been added to the ex-officio list of members: representatives from the Department of Defense and the Department of Veteran Affairs. This is significant because there is considerable overlap between Gulf War Syndrome and ME/CFS, and the DOD funds a lot of its own biomedical research and has access to a LOT of funds.
So, while the government is infamous for moving at a snail's pace and being non-responsive, these are all positive changes that could result in significant changes for ME/CFS patients in the future. We are moving in the right direction!