Thread by @meighanstone

THREAD: @NIHDirector announced "investing an additional $515m USD" over 4 years today in #NIHRECOVER. So what does this release say or not say & what does this mean for the #LongCOVID community? Sharing my humble take, if any of this resonates with other patient advocates. 1/x

https://twitter.com/NIHDirector/status/1757476008482193616

@NIHDirector First, the political positioning: today's @NIH RECOVER funding announcement clearly planned to temper @CDCgov staff (likely also planned) leak will change 5-day COVID isolation guidance, imperiling vulnerable & disabled folks & perpetuating pandemic 2/xwashingtonpost.com/health/2024/02…

@NIHDirector @NIH @CDCgov Second, I didn't seen any #LongCOVID group come out with a FAST statement today. Nor have I heard any group say @NIH reached out with a heads up. This shows NIH doesn't yet recognize utility or need for real engagement with #LongCOVID groups, as would've done that diplomacy. 3/x

@NIHDirector @NIH @CDCgov THE GOOD NEWS:
-If truly "additional", $515m USD #NIHRECOVER funding shows some #LongCOVID prioritization in tough NIH budget moment
-Press release in @NIHDirector name, when could have buried on NIH website. Shows some key stakeholder attention & deliberate leadership choice 4/x

@NIHDirector @NIH @CDCgov Now, quick funding analysis:
-$515m may seem big, but it's over 4 years
-Roughly $130m/year won't solve Long COVID & isn't an acceleration of, but a slowing, of US response
-Release VERY short on funding specifics 4 years into public health crisis impacting 1 in 9 Americans. 5/x

@NIHDirector @NIH @CDCgov What should alarm anyone with #LongCovid in @NIH release: striking lack of specific goals, timelines or outcomes. It's entirely unacceptable a vague "increase the odds of identifying treatments that work" is overall goal of RECOVER funding, as signature US #LongCOVID effort? 6/x

@NIHDirector @NIH @CDCgov Another release example of how vague US plan is to find #LongCOVID solutions? RECOVER helps "broaden the identification of Long COVID" & is "ultimately helping to inform." The time has passed for "indirect" impact. Patients urgently need clear biomarkers & direct solutions 7/x

@NIHDirector @NIH @CDCgov It's notable 4 years on, no @NIHDirector staffer read draft funding announcement & said: "but we don't provide any new, concrete details, timeline, or specific goals". Would saying at your performance review you'll "increase the odds" of performing your job pass muster? No. 8/x

@NIHDirector @NIH @CDCgov NIH release also cites patient rep "valuable input". But this isn't a "feel good" exercise! Patients want input concretely acted on. Language shows NIH still not hearing widespread feedback patient reps must be part of real decisions, easy community win NIH could action now 9/x

@NIHDirector @NIH @CDCgov @NIHDirector release also notes #NIHRECOVER studies of "at least 13" interventions, 4 starting 2023 & more "expected" in months ahead. Yet ZERO specifics on how this $515m USD will better balance observational vs. interventional to reflect critical Hill & patient feedback 10/x

@NIHDirector @NIH @CDCgov Lastly, this @NIH release flag: "research plans are in development & specific allocations of the new funding may be adjusted". Why? Essentially says 4 years in, no US comprehensive #LongCOVID plan ready & cooked to deploy this funding NOW? So patients can & must shape use. 11/x

@NIHDirector @NIH @CDCgov In closing, @NIHDirector gives community an opening, stating NIH "committed to working with our partners to provide solutions for those with Long COVID". If so, I hope Dr Bertagnolli will meet directly & soon with patients to best use this $515m & solve #LongCOVID together. 12/12