Reprinted with the kind permission of Solve ME/CFS Initiative.
On January 12 and 13, the Federal Chronic Fatigue Syndrome Advisory Committee (CFSAC) met in Washington DC for one of its biannual meetings. CFSAC works to provide advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
This meeting included a final presentation from outgoing Assistant Secretary for Health Karen DeSalvo, who will be departing due to the change in administration.
Overall, this CFSAC meeting continued the dismal record of forward movement regarding our disease, despite the efforts of individuals serving on CFSAC. Carol Head is committed to pushing for a number of process changes that may impact the underlying causes of dysfunction in the committee, and both she and SMCI are committed to making progress on ME/CFS both within and outside of CFSAC. To accomplish these goals, our organization will get in touch with each of CFSAC’s ex-officio members (government agency staff) individually to follow up on issues raised both in the meeting and by Carol Head’s presentation.
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SMCI is pleased to provide the following CFSAC meeting summary for those who had difficulty watching remotely and were unable to participate.
Working Group Reports and Public Comments
- The Stakeholder Engagement Working Group, including SMCI Advocacy and Engagement Manager Emily Taylor, reported that most agencies are failing to include and work with ME/CFS stakeholders effectively. The working group reviewed several models from other agencies and disease areas for effective engagement and made recommendations to the committee for improvement. The recommendations were not adopted; instead, they are to be rewritten and reconsidered at the next CFSAC meeting, where the working group will present additional recommendations. SMCI is disappointed that the hard work and strong recommendations of this working group were met with resistance and failed to produce strong action.
- The Pediatric Education Working Group gave reports on recommendations and the structure of school-based programs and medical professionals. While these reports and recommendations were educational, it still highlighted the desperate need for education and empowerment for young people with this disease. The recommendation was passed unanimously and will go to the incoming, and not yet known, secretary of HHS.
- A new working group on medical education was formed.
- CFSAC heard public comments from many passionate patients and family members. For examples, please see comments from ME/CFS advocates Jennie Spotila and Terri Wilder.
- Many working groups discussed several possible recommendations (in addition to revisiting previously submitted recommendations that were not adequately addressed) but did not formally adopt new recommendations.
- The Centers for Disease Control and Prevention (CDC) published a new video regarding ME/CFS, attended several conferences regarding ME/CFS, held meetings regarding the CDC website revision to incorporate recommendations from the 2015 Institute of Medicine report, held an informational session for CDC staff with Dr. Jarred Younger, and answered questions about medical education efforts. Clearly, there is no immediate commitment to removing the now discredited graded exercise therapy (GET) recommendation from the CDC’s website, and many questions regarding the content of ME/CFS videos and stakeholder engagement processes remain unaddressed.
- The Food and Drug Administration (FDA) answered questions regarding expediting drug approval, finding research commonalities, improving collaboration with other agencies, and improving scientific understanding of ME/CFS. Overall, the FDA expressed a commitment to interagency collaboration as well as a desire to improve stakeholder engagement. The FDA has demonstrated a strong understanding of the complexities associated with ME/CFS, earning praise from CFSAC member Dr. Jose Montoya.
- The Social Security Administration (SSA) announced plans to focus on questions regarding clinical care and reversing stigma in the medical community. The SSA has also created a new, in-house continuing medical education program for providers and plans to add ME/CFS to the curriculum. The program is currently available to 3,000 physicians, and the agency plans to have the program available to every medical provider in their network by the end of fiscal year 2017. The ME/CFS component of the program remains under development, and SSA representatives committed to providing additional information regarding stakeholder involvement. SMCI pressed for CFSAC review of the program before release and pressed the SSA to make ME/CFS data more transparent.
- The National Institutes of Health (NIH) addressed questions regarding clinical care, funding increases, the lack of an ME/CFS research case definition, research protocol releases, and disease stigma. The NIH also provided updates on the current intermural research study, progress and currently stated goals, RFAs, and the Trans-NIH ME/CFS Working Group. The funding for the two announced RFAs was released, including the total minimum funding figure of $29.7 million over five years. While not yet final, this figure is extremely disappointing; it does not begin to address the significant disparity in spending between ME/CFS and other diseases. The NIH has said that it intends to release the two RFAs before the end of January.
- The Health Resources & Services Administration (HRSA) gave no formal presentation but answered questions regarding specific educational materials being generated for ME/CFS, stakeholder engagement, and its internal review process for materials produced by grantees. There was discussion of a flier that was produced under the auspices of HRSA that continues to treat ME/CFS inappropriately as a “lightweight” problem. SMCI calls for clear accountability, oversight, and stakeholder engagement requirements for HRSA grantees when producing materials relating to ME/CFS.
- The Agency for Healthcare Research and Quality (AHRQ) presented an update on relevant projects that could overlap for ME/CFS, but AHRQ is limited from working on specific diseases. The ex-officio for AHRQ praised the ME/CFS community for its effective and data-driven advocacy, answered questions regarding the recent addendum that downgraded CBT and GET treatment recommendations, and discussed potential collaboration on medical education in the form of a physician’s guide. AHRQ expressed an eager willingness to assist SMCI and CFSAC with additional medical education tools but cannot do so without funding and direction from HHS.
Community Liaison Reports
- SMCI President Carol Head delivered a hard-hitting call to action, providing specific recommendations to each agency for improvements in the handling of ME/CFS. Carol was the first at the meeting to call ME/CFS a “public health crisis” before adding that the committee “has been almost utterly ineffective in addressing it.” The key goal of Carol’s presentation was to share positive, actionable steps to move forward and make progress by breaking down bureaucratic red tape, taking a strong leadership position, and bringing ME/CFS stakeholders into the process of government rather than forcing them to remain on the sidelines. Carol spoke thoughtfully and with force on behalf of those suffering with ME/CFS across the country. To watch Carol’s presentation, go here. To look at Carol’s slide deck, go here.
- The International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis meeting summary included key scientific and treatment study results as well as an analysis of the field.