Thread by @meighanstone

📣#LongCOVID Community 📣 Senate Appropriations Committee just posted FY25 Labor-H and Defense bills and report text, reviewing now, will post notes & flags in this thread after parse through documents: 1/xappropriations.senate.gov/hearings/full-…

Starting with "win" in Defense FY25 bill report: we got Long COVID added for the first time to the Peer-Reviewed Medical Research Program! This means researchers can access a pool of $370 million in funding. MECFS also made it as an approved condition to access these funds. 2/x

OK, somewhat hilariously, the @SenateApprops page isn't working properly! Someone put these FY25 LHHS docs up, headed for the exits for that sweet, sweet Recess vacay & we got a Senate 404 error folks! Think just tricked it into getting text anyway! Reviewing... 3/x

@SenateApprops Some creative URL hacking & we got in! Ok, first "Long COVID" mention in FY25 Senate LHHS report is here, with Senate LaborH Approps Subcommittee directing CDC to track Long COVID & have patient registry. 4/x

@SenateApprops Next up: Win for #MECFS community & #LongCOVID folks who develop ME: CDC national epidemiological tracking study for ME/CFS & "post-infectious syndromes prevalence", includes adult ME/CFS rates & study of causes, risks, DIRECTING consult with patients & informed clinicians...5/x

@SenateApprops Next on p82: $187,397,000 for National Center for Health Statistics, "Committee intends this funding to support intersectional analyses of healthcare access, chronic health conditions, including #LongCOVID, and mental health status". A win as Long COVID specific directive. 6/x

@SenateApprops P93: This isn't #LongCOVID research per se, but for those of us also calling for better CDC & Federal/State/Local surveillance (COVID, H5N1), $70m & Committee urging on Center for Forecasting & Outbreak Analytics [CFA] & Ready Response Enterprise Data Integration [RREDI] 7/x

@SenateApprops P93: More CDC $ & direction if focused on reinfection prevention: $9.2m for Centers for Public Health Preparedness & Response, "evidence-informed or evidence-based practices may reduce the spread of SARS–COV–2 & its variants to improve public health preparedness & response" 8/x

@SenateApprops Ok, this beast is 470 pages, finally to NIH! Starting with National Heart, Lung & Blood Institute (NHLBI): some important & promising mentions here for #LongCOVID patients who develop heart, lung & similar issues, vs more MECFS / other phenotypes 9/x

@SenateApprops p103: Critical on COVID disparities: "people of color were 25% less likely to be recognized eligible for COVID–19 treatment...Committee encourages NHLBI to address these health disparities by supporting development of new technologies for monitoring blood oxygen saturation" 10/x

@SenateApprops p103: More critical content on socioeconomic burden & disproportionately impacted communities, ensuring RECOVER & NHLBI focus on long-term pulmonary, respiratory & cardiovascular conditions in adults & children cc: @LongCovidFam @LongCovidKids @chiluvs1 @LongCFoundation 11/x

@SenateApprops @LongCovidFam @LongCovidKids @chiluvs1 @LongCFoundation #LongCOVID & SLEEP, p103: Welcome mention here on NHLBI & COVID impact on sleep disorders, circadian rhythm. Committee urges NHLBI to accelerate implementation of NIH research plan & requests a report / update on these activities in FY26 justification. 12/x

@SenateApprops @LongCovidFam @LongCovidKids @chiluvs1 @LongCFoundation p138 More important content here for kids with COVID-triggered PANS/PANDAS: "Committee encourages NIH to continue to prioritize research on PANS/PANDAS" & requests FY26 CJ update on mechanisms, biomarkers, treatments, genetic susceptibility cc: @LongCovidFam @LongCovidKids 13/x

@SenateApprops @LongCovidFam @LongCovidKids @chiluvs1 @LongCFoundation 📣 Now up, #LongCOVID Treatments, p145: "Committee remains concerned about economic & overall health impact that Long COVID inflicts on the Nation...6-19% of those infected with SARS–CoV–2 go on to develop Long COVID, resulting in up to 20 million Americans suffering" 14/x

@SenateApprops @LongCovidFam @LongCovidKids @chiluvs1 @LongCFoundation p146 has NASEM definition, #PEM #POTS #MECFS mentions & Senate clinical trial progress criticism & NIH direction: "Committee is concerned NIH has not expanded evaluation of treatments...the Committee urges NIH to rebalance its research program to prioritize clinical trials" 15/x

@SenateApprops @LongCovidFam @LongCovidKids @chiluvs1 @LongCFoundation p147 #LongCOVID & mitochondrial research: Some interesting direction here from Committee to NIH on advancing mitochondrial disease research & Long COVID intersections, collaboration with the FDA on new drug potential. Reflects some recent papers & some patient experiences. 16/x

@SenateApprops @LongCovidFam @LongCovidKids @chiluvs1 @LongCFoundation BIG #LongCOVID WIN 📣Pgs 156-157: "ARPA–H is urged to invest in Long COVID research to ensure high-risk, high-reward research focused on drug trials, development of biomarkers" & also includes #dysautonomia #POTS & #MECFS! Senate FY25 bill recommends $1.5 BILLION for ARPA-H! 17/x

More in AM, beyond all out of spoons here for long Senate bill reading. Will also try to make a more user-friendly summary for folks as a resource tomorrow. More to come! 18/x

Long COVID insomnia strikes again, so will wrap now. Congress rarely asks ARPA-H to take on specific conditions so a big deal named Long COVID #dysautonomia #POTS #MECFS. Senate FY25 bill has $1.5 Billion overall ARPA-H funding, so significant & new pool of funding to access 19/x

If don't know @ARPA_H, it's a big opportunity for Long COVID as do "high risk, high reward" research vs. NIH "basic science". Move faster, less bureaucracy, default stance is get tests & treatments TO MARKET. ARPA-H also moves big grants OUTSIDE USG to external researchers 20/x

@ARPA_H Last on ARPA-H: one of the few ARPA-H conditions/projects in Senate bill is Pres Biden's women's health initiative, with White House power behind it. We had a small crew of chronically ill & disabled folks, ideas & language drafted without lobbyists--a miracle in there too. 21/x

@ARPA_H Almost done! Now Agency for Healthcare Research & Quality (AHRQ) p 175: Senate Approps bill recommends $2 million for Center for Primary Care Research, with focus on equity & "syndromes such as Long COVID, behavioral & social health integration, telehealth in primary care." 22/x

@ARPA_H More AHRQ p176: $13.5 million to continue work of Long COVID Centers of Excellence & Long COVID Care Network, also directs coordination with other federally funded Long COVID research initiatives & "robust data collection & data sharing efforts among agencies and grantees." 23/x

@ARPA_H Lastly, other COVID treatment & prevention later in bill:
p215 Administration for Strategic Preparedness & Response [ASPR] monthly report on COVID19 therapeutics inventory & deployment
p216 BARDA funding (where's that elusive nasal or sterilizing vax to fight reinfections?) 24/x

@ARPA_H Last bill COVID flag: our lost friend, TEST TO TREAT, p222. Sadly no funding, but Committee directs HHS to submit a report to Congress on lessons learned & "design of potential test-to-treat demonstration for COVID–19, influenza & RSV to serve vulnerable populations." 25/x

@ARPA_H More analysis & summary to come. Some real wins, some key requests didn't make it in yet (why we keep organizing) & some critical questions how much of overall $2B NIH FY25 increase goes to RECOVER/NIH #LongCOVID research, who decides & can Congress add to final FY25 bill.📣26/26