A quick note to loop you in on another appropriations effort we’re in support of – one that directly impacts our ME/CFS community, with a deadline tonight!
Senators Markey (D-MA), Kaine (D-VA), and Duckworth (D-IL) are championing a FY27 “Dear Colleague” letter calling for over $210 million in research funding across NIH, ARPA-H, and AHRQ. The effort is led by Long COVID Campaign, and the letter covers Long COVID alongside associated conditions, including dysautonomia, POTS, and ME/CFS. More Senate signatures are needed by end of day tomorrow to ensure these budget requests are prioritized!
Here’s what the letter calls for:
- $200 million at NIH to accelerate interventional drug trials, biomarker discovery, and diagnostics for Long COVID and associated conditions like dysautonomia, POTS, and ME/CFS. It would include a required progress briefing from the NIH Director within six months of receiving funding.
- $10 million at AHRQ to keep Long COVID Care Network clinics open for rural and underserved patients.
- Direction to ARPA-H to take on high-risk, high-reward research on Long COVID drug trials and biomarkers, including associated conditions like dysautonomia, POTS, and ME/CFS.
The NIH report language is particularly worth noting: it directs funding toward interventional pharmaceutical trials, biomarker discovery, and real diagnostic tests. These are the kinds of research our community has long said are most needed.
Here’s how to help by end of day tomorrow, Friday, April 17:
Long COVID Campaign has built two tools that automatically identify your two Senators based on your address:
👉 Email your Senators: tinyurl.com/LongCOVIDEmail
👉 Call your Senators: tinyurl.com/LongCOVIDCall
The email template is fully editable so please make it yours. A Senator’s staff reads a personal message very differently than a form letter. Add a few sentences about your own experience: what ME/CFS or Long COVID has meant for your life, what research could give back, why $210 million in FY27 matters to you specifically.
If you’re not sure where to start, here’s a prompt to adapt (delete and rewrite in your own voice):
“I’m writing to you as [a person living with ME/CFS / Long COVID / both / a caregiver / a family member / a clinician]. [Here’s what this illness has meant for my life in one or two sentences.] I’m asking you to sign the FY27 ‘Dear Colleague’ letter championed by Senators Markey, Kaine, and Duckworth. The research funding it calls for at NIH, AHRQ, and ARPA-H would directly benefit people like me — and an estimated 21 million other Americans living with these conditions.”
If you have additional energy, please share with friends, family, and fellow advocates!
Thanks, as always, for being part of this work.
With gratitude,
The Solve M.E. Team
P.S. If you can only do one thing today: send the email (tinyurl.com/LongCOVIDEmail). It takes two minutes. The deadline is tomorrow.