Today, April 23, is the last day to submit comments to Senator Bernie Sanders’ office and the Senate Health, Education, Labor, and Pensions (HELP) Committee about draft legislation proposing $10 billion in funding for Long Covid research over the next 10 years.
Following The Sick Times’ story last week about this proposed bill, we received two letters from readers who shared their comments on the bill and hoped to inspire others in the Long Covid community to take action.
Lisa Geiszler, living with myalgic encephalomyelitis (ME):
I have lived with severe ME for over 20 years. After a Covid infection, my health and baseline has eroded.
The ME community has supported the Long Covid community and were the first to warn of that Covid would lead to a mass disabling event. Now, many people with LC are being diagnosed with ME, another post-infection chronic illness.
We need the LC community to help the ME community by requesting that the Sander’s bill include, explicitly in writing, ME. We need to connect chronic post-infection illnesses as a field of medical research under a common place at the NIH, instead of scattered across dozens of offices.
Please stand up for ME and ask Senator Sanders to include ME in his Moonshot bill.
Editor’s note: Lisa recommended this article by Cort Johnson at Health Rising and this petition from Solve M.E. as additional resources on this issue.
Sam Friedman, People’s CDC member and professor of population health:
I filled out the Committee’s input form and suggested to them that, in addition to the priorities listed in it, they establish and fund programs for high-risk, high-gain investigator-initiated research projects. This is because there is still a lot about the epidemiology and basic science aspects of Long Covid that we do not know.
NIH established its Pioneer Awards, and NIDA established its Avant Garde and Avenir programs (for HIV/AIDS), to fund such “game changing” research. I applied for and got an Avant Garde award, and helped two younger researchers get Avenir Awards. I think that both my project and one of the Avenirs have created important breakthroughs, and in general I think it important to fund these kinds of work for Long Covid.
Submit comments on the proposed legislation to Sen. Sanders and the HELP Committee by emailing LongCOVIDComments@help.senate.gov by the end of the work day on April 23.
To submit a letter to the editors at The Sick Times, email editors@thesicktimes.org and include the phrase “letter to the editors” in your subject line.
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