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More Federal Commitment to ME/CFS & Long Covid Research

House Appropriations Committee Includes Specific ME/CFS & Long Covid Funding Callouts

This week, the House Appropriations Committee released its report accompanying the fiscal year 2023 Labor, Health and Human Services, Education, and Related Agencies appropriations bill. Our advocacy team at Solve M.E. was especially excited to see three key callouts for addressing ME/CFS and Long Covid in this critical funding bill. These many mentions addressed research, disparities, and understanding how to diagnosis, treat, and prevent these post-infection diseases:

  1. Chronic Fatigue Syndrome Advisory Committee—The Committee looks forward to reviewing the HHS plan regarding myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) which was requested in House Report 116–62 and was required within 180 days of the date of enactment of that Act. In the interim, the Committee encourages HHS to foster interagency and stakeholder collaboration in addressing the related crisis in post-acute COVID–19 syndrome (PACS) and ME/CFS by forming an Infection-Associated Chronic Illnesses Advisory Committee that includes, but is not limited to relevant agency representatives, patient representatives from long COVID, ME/CFS, and other infection-associated chronic illnesses communities, medical care providers, and disease experts.
  2. Long COVID Research—The Committee urges NIMHD to support research on racial and ethnic health disparities prevalent in the diagnosis, treatment, recovery, and quality of life of long COVID–19 patients.
  3. Infection-Associated Illnesses—The Committee recognizes the scientific and clinical opportunities in infection-associated illnesses research and strongly encourages NIH to continue and expand its efforts to understand the underlying causes and risk factors for individuals with long COVID and ME/CFS, with a focus on diagnosis, treatment, and prevention. The Committee encourages NIH to support multidisciplinary efforts related to expanding existing long COVID research efforts to include study participants with ME/CFS and other overlapping infection-associated illnesses.


These and many other mentions can be found in the full bill text here.

Draft Defense Appropriations Bill Includes Language for Long Covid and ME/CFS Research

In case you missed it, our advocacy team celebrated a similar milestone last week when we learned a draft of the FY23 Department of Defense Appropriations Bill from the House of Representatives included language addressing ME/CFS and Long Covid. This separate callout was fought for by our team at Solve M.E. and advocates during ME/CFS Advocacy Month! The report reads:“The Committee recommends that the Assistant Secretary of Defense for Health Affairs conduct research on Long COVID and ME/CFS with a focus on issues related to military populations.”Read the full bill here.

ARPA-H Passes the House, Aims to Strengthen Federal Research

Last week, the House passed H.R.5585, bipartisan legislation led by ME/CFS champion Chairwoman Anna Eshoo (D-CA) that authorizes  the Advanced Research Projects Agency for Health, or ARPA-H. President Biden signed over $1 billion in funding to establish ARPA-H, a new agency that aims to strengthen biomedical research and accelerate the pace of scientific breakthroughs for severe diseases.“Today, with an overwhelmingly bipartisan vote, we advanced my ARPA-H legislation to provide the new agency with the full authorities it needs to be successful from Day One, ensuring it will be a nimble, dynamic, and independent agency,” said Congresswoman Anna Eshoo in a press release. “This new agency will serve as a beacon of hope to the many Americans who for decades have urged Congress to do more.”The bill places the agency within the Department of Health and Human Services, and House appropriators are considering legislation that would significantly boost funding for ARPA-H. Additionally, the Biden administration proposed a $4 billion increase for ARPA-H in fiscal 2023.Read the full bill text here.

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