Top 10 ME/CFS Recommendations for the Long COVID National Research Action Plan

#MEAction has been hard at work continuing to advocate to the Department of Health and Human Services (HHS) on behalf of people with ME and Long COVID since our last update in May.

HHS has been directed by the White House to play a leading role in coordinating the response to Long COVID and associated conditions. In the past two months we’ve taken steps to engage HHS by: 

  • participating in multiple HHS community “listening sessions,” 
  • introducing HHS to leading ME/CFS experts to inform them on the connection between ME/CFS and Long COVID,
  • submitting recommendations for ME/CFS integration into Long COVID research, and
  • contributing to the recommendations made by other patient-led Long COVID groups.

**Please see the bottom of this article for more information about the upcoming July 15th White House briefing on the national response to Long COVID and associated conditions and the community debriefing being hosted by Marked by COVID immediately after.**

 

Top 10 ME/CFS research recommendations

HHS has been tasked by the White House with preparing an interagency National Research Action Plan on Long COVID. We’ve proposed the following ten recommendations federal agencies need to take to fully integrate ME/CFS into Long COVID research:

  1. Standardize how ME/CFS is identified and tracked across all studies.
  2. Include patients with ME/CFS and other post-viral illnesses as comparator groups.
  3. Include in the Long COVID research strategy those areas of ME/CFS research that are proving fruitful.
  4. Leverage ME/CFS clinical learnings and pathophysiological findings to accelerate clinical treatment trials for Long COVID.
  5. Assess Long COVID patients for the emergence of ME/CFS and other post-infectious illnesses/conditions at multiple time points during longitudinal studies and follow those patients for an extended duration of years to better understand the illness.
  6. Undertake large-scale whole genome sequencing to identify predisposing and symptom-associated risk variants that may indicate causal pathways for Long COVID subgroups, including ME/CFS.
  7. Evaluate available tools and make recommendations for new tools to assess the functional impairment and clinically demonstrate the disability seen in ME/CFS.
  8. Create a formal ME/CFS advisory group to provide input on all federal Long COVID initiatives and strategic plans.
  9. Develop surveillance and epidemiological studies on adults and children with Long COVID who develop ME/CFS. 
  10. Improve understanding of the health, functional impact, and socioeconomic burdens on people with Long COVID who develop ME/CFS through the systematic collection of data.

The full details of our proposal may be found here.

 

Why we are making these recommendations

These recommendations are not new. They uplift select recommendations on ME/CFS Research Priorities made by the Community Advisory Committee (CAC) for the NIH ME/CFS Collaborative Research Centers in May 2022. They also align with recommendations from the August 2021 joint letter to NIH (by #MEAction, Solve M.E., and OMF) and #MEAction’s followup letter to NIH in January 2022.

Our goal in “repackaging” various ME/CFS recommendations is to provide HHS with a concise and complete list of everything about ME/CFS we view as needing to be in this Long COVID National Research Action Plan—and to make it as easy as possible for HHS staff to accomplish that. 

At various points in our advocacy to NIH about their $1.15 billion Long COVID research initiatives, including the RECOVER Initiative, we have too often heard the excuse that RECOVER is “not about ME/CFS” and at best we just need to “hope” there will be trickle-down benefits for people with ME/CFS. 

We know such an approach is misguided and deeply flawed for both people with ME/CFS and those with Long COVID. Numerous studies have shown that ME/CFS is a significant sequelae of acute COVID-19, and many people with Long COVID have symptoms consistent with ME/CFS and are going on to acquire an ME/CFS diagnosis. The White House has already acknowledged ME/CFS as one of several associated conditions with Long COVID. This is why #MEAction is advocating and informing HHS about what needs to be clearly part of any document they produce laying out a strategic plan for future Long COVID research. A national plan for Long COVID research must not ignore or defer the urgent issues facing ME/CFS. 

 

Collaborating with patient-led Long COVID groups

The 10 specific recommendations regarding ME/CFS are not the only important issues that need to be addressed in the Long COVID National Research Action Plan. That is why we also contributed to, and endorse, additional patient-driven research recommendations along with Patient-Led Research Collaborative, Strategies for High Impact, and Marked by COVID covering high-level recommendations for Long COVID research priorities, design, and oversight.

 

White House Briefing and Community Debriefing

HHS and the White House Office of Public Engagement will be hosting a Long COVID Community and Partner Briefing scheduled for Friday, July 15 from 4:00–4:45 pm (ET). The purpose of this briefing is to share insights and updates on the status of the reports with nongovernmental experts, organizations, and interested parties, including individuals affected directly by the long-term effects of COVID-19. Register here.

Featured speakers include Admiral Rachel L. Levine, MD, HHS Assistant Secretary for Health and Rear Admiral Michael F. Iademarco, MD, MPH, Deputy Assistant Secretary for Science and Medicine and other members of the Long COVID workgroups and team. Questions submitted in advance will be given priority; live questions will be accepted if time allows. 

Ally organization Marked by COVID will also host a community debrief immediately following the official HHS/White House briefing. Register here. Marked by Covid and #MEAction are both part of the National Network for Long COVID Justice and both have endorsed these joint recommendations for Long COVID research.

Join us for both the White House briefing and the community debrief!

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