NIH RECOVER study for Long COVID

Pyrrhus

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It looks like there might be a problem with the $1.15 billion that the US Congress gave to the NIH to study Long Covid...

ONE:
Late in 2020, the US Congress passed a bill providing $1.15 billion to study Long Covid. The US National Institutes of Health (NIH) has used this money to undertake the large RECOVER Research Initiative to study Long COVID.

TWO:
Back in April, the Long COVID advocacy group called Body Politic released a letter calling for such research to build on existing research from ME:
Letter from Body Politic to the NIH about Prioritizing ME/CFS Researchers
https://forums.phoenixrising.me/thr...-about-prioritizing-me-cfs-researchers.83670/

THREE:
Now, the Patient-Led Research Collaborative for Long COVID, which is affiliated with Body Politic, has released an open letter with serious concerns about the NIH RECOVER study, including the fact that the lessons of ME are not being heeded:

Open Letter regarding the RECOVER initiative to study Long COVID
https://patientresearchcovid19.com/open-letter-regarding-the-recover-initiative-to-study-long-covid/
Excerpt:
Patient-Led Collaborative said:
November 29, 2021

An Open Letter to NIH, NHLBI, NYU and all RECOVER Initiative stakeholders, including people with Long COVID:

Patient enrollment has already begun in the U.S. National Institutes of Health (NIH) RECOVER initiative, which “seeks to understand, prevent, and treat PASC [post-acute sequelae of SARS-CoV-2 ], including Long COVID.”

Yet, this initiative — which has raised the hopes of the millions who are struggling with the myriad challenges of Long COVID even as the COVID-19 pandemic persists — is in grave danger of failing at its goals.


Patient advocates have warned about many fundamental concerns. But despite our standing — as people living with Long COVID who conducted the first research on the phenomenon, as those who host platforms for dialogue and peer support for tens of thousands of people with Long COVID, and as those with wide and deep personal and professional experience with Long COVID — we have no access to important information about the RECOVER plans and often no way to tell if or how our concerns have been addressed. Further, even though some of us were invited to give input in the first phase, we have seen no ongoing mechanism for input nor confirmation that our input was put into action.
 
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Pyrrhus

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For some context, here are some releases from the NIH:

January 19, 2021
Trying to Make Sense of Long COVID Syndrome
https://directorsblog.nih.gov/2021/01/19/trying-to-make-sense-of-long-covid-syndrome/

February 23, 2021
NIH launches new initiative to study “Long COVID”
https://www.nih.gov/about-nih/who-w.../nih-launches-new-initiative-study-long-covid

September 15, 2021
NIH builds large nationwide study population of tens of thousands to support research on long-term effects of COVID-19
https://www.nih.gov/news-events/new...s-support-research-long-term-effects-covid-19