In April, President Biden issued a Presidential Memorandum directing the Secretary of Health and Human Services (HHS) to coordinate a new effort across the federal government to develop and issue the first-ever interagency national research action plan on Long COVID as well as a report on the Long-Term Effects of COVID-19.
Over the past four months, Solve ME. has met with HHS and administration officials to discuss feedback and guidance to help inform these reports. Solve was engaged in the process through meetings, working groups, as well as through partners listening sessions with other organizations and advocates.
The two reports, National Research Action Plan on Long COVID and Services and Supports for Longer-Term Impacts of COVID-19, total 209 pages summarizing key components of the administration’s priorities and policies regarding Long COVID. The National Research Action Plan on Long COVID report summarizes the research plan and targets for future investments from public and private research investors. The Services and Supports for Longer-Term Impacts of COVID-19 report includes a comprehensive list of services and supports available for individuals with Long COVID and associated conditions.
Our direct input was specifically integrated into the Research Action Plan under Research Gaps and Funding (pp.24-25):
“Some partners expressed concerns about current governmental research projects, based on their personal participation in, or engagement with them. For example, patient advocates highlighted the need to integrate evidence and learnings from prior and current research on post-infectious conditions, including dysautonomia and myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS), into ongoing Long COVID research. The importance of relevant control groups in studies of Long COVID was emphasized. One of the lessons learned from the Centers for Disease Control and Prevention’s (CDC) longstanding ME/CFS program, echoed by some individual partners, is that post-infection illnesses are often unrecognized or overlooked. There is a need to distinguish the ME/CFS-like (medically unexplained) subgroup of Long COVID from subgroups with COVID-19-related well-established chronic conditions (such as heart disease, diabetes, and renal disease) and prioritize research on Long COVID ME/CFS-like illnesses…”
We are encouraged to see the emphasis on the urgency to find solutions. We would have liked to see a plan for public-private partnerships to accelerate diagnostics and treatments and hope that future announcements will address this area.
We will continue to advocate for a Federal Advisory Committee with a clear mandate and resources. Two Solve M.E. Staff members serve on the patient advisory boards overseeing the RECOVER Initiative at the National Institutes of Health (NIH). Solve M.E. will pursue research opportunities and investments to accelerate scientific progress and clinical trials.