Chronic Disease Stakeholders Join Solve M.E. in Push for Federally Funded Research into Long COVID

December 4, 2020

Jointly authored letter serves as a warning about the increasing number of COVID-19 patients experiencing post-viral complications. 

LOS ANGELES, CA — Twenty leading chronic disease stakeholders joined the Solve ME/CFS Initiative (Solve M.E.) in authoring a powerful letter urging Congress to fund millions of dollars in new National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) research into the post-viral health complications for long-term COVID-19 (Long COVID) survivors. To view a copy of the letter, click here.

With more than 13.9 million coronavirus infections in the U.S., the letter emphasizes the importance of research into chronic conditions known to be associated with viral triggers, such as: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Dysautonomia, Mast Cell Activation Syndrome (MCAS), and Postural Orthostatic Tachycardia Syndrome (POTS), among others. Authors of the letter include: Solve ME/CFS Initiative, National Health Council, National Organization for Women, #MEAction, Open Medicine Foundation, Dysautonomia International, The Mast Cell Disease Society, Body Politic, COVID-19 Longhauler Advocacy Project, Hadassah, American Medical Women’s Association, Nurse Practitioners in Women’s Health, HealthyWomen, Bateman-Horne Center, Institute for Neuro-immune Medicine, Pandora Org, Sex and Gender Health Collaborative, Minnesota ME/CFS Alliance, The Shane Foundation, Massachusetts ME/CFS & FM Association, & The American Dysautonomia Institute.

“Preliminary evidence suggests that nearly five million Americans will experience Long COVID regardless of infection severity, which will likely result in a post-viral chronic fatigue crisis,” said Oved Amitay, CEO of Solve M.E. “Solve M.E. and our stakeholder allies call on Congress to act now to support new NIH and CDC funding for research into the health needs of this rapidly growing patient population.”

The letter cites warnings from leading public health officials — including Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Diseases — about the estimated 3.2 million Americans that could be temporarily or permanently disabled by Long COVID symptoms. Indeed, studies show that 66 percent of patients with post-viral acute respiratory distress syndrome report experiencing severe fatigue after 12 months, consistent with Dr. Fauci’s analysis that Long COVID symptoms are “highly suggestive” of ME/CFS. These alarming statistics underscore the urgent need for funding, research, diagnostics, and treatment into Long COVID.

Chronic disease experts unanimously agree that in order to adequately address Long COVID complications, Congress must act immediately and appropriate the following funds:

  • $110 million for the establishment of Long COVID Collaborative Research Centers and Centers of Excellence;
  • $60 million toward expanding post-viral disease research;
  • $3.5 million for the development and issuance of medical guidance about Long COVID to medical providers and front-line health professionals; and
  • $300,000 toward convening experts and stakeholders to establish data harmonization.

“We strongly encourage these funds be allocated to the NIH and CDC by way of the congressional appropriations process or a future COVID-19 relief package so this critically important research can begin immediately,” said Amitay.

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We are so grateful for your passion in advocating for ME/CFS sufferers! In addition to lending your voice, you can make a gift of any amount to Solve M.E. We will put your donation to work, reaching further for changes in research, legislation, and education. Your gift is crucial to the fight against ME/CFS!

Act now and your gift will be doubled!

Generous members of the Solve M.E. Board will match all gifts made to Solve M.E. before midnight on December 31st up to $500,000 — meaning your gift will go twice as far to help identify treatments that will improve the quality of life for people who have suffered from ME/CFS for too long.

Your donation by December 31 and our board’s challenge, could generate at least $1 million in funding to fight this terrible disease.