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HHS-produced session launches long COVID consortium as patients urge research changes
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Summary
A Department of Health and Human Services–produced listening session announced the launch of a long COVID consortium and collected patient testimony describing years of symptoms, urging that patient experiences shape a structured research agenda.
At a session produced by the Department of Health and Human Services, organizers announced the launch of a long COVID consortium and heard multiple patients describe prolonged, multi-system illness and call for research and care tailored to their experiences.
The Moderator opened by saying, “Today, we're launching a long COVID consortium,” and framed the meeting as both a listening session and an effort to find “alternatives” and “solutions.” The session was described in the transcript as a response to frequent calls from people across the country seeking help.
One participant speaking in the session said they were “representing and speaking for, fighting for the 20000000 Americans with long COVID,” adding, “Long COVID is real.” Another speaker described having had long COVID since March 2020 and said, “I've had it for 5 and a half years now” and that they had experienced “170 plus symptoms, some very severe.” A third participant said, “My kids and I all have long COVID” and recounted connective-tissue symptoms that at times left them unable to walk and a history of trying many different treatments.
Several speakers emphasized the complexity of the condition and the limits of any single treatment. One participant said, “There's not gonna be 1 drug that undoes everything for long COVID,” and urged clinicians and researchers to treat patients individually “the same way that we do with HIV care, the same way that we do with cancer care.”
Speakers also called for collaboration between patients and clinicians. A participant said they had “heard so many great ideas, from the some of the physicians in the room and from, I mean, patients themselves,” and urged that those ideas be incorporated into a research agenda. The session included an explicit goal of turning unstructured patient data into structured evidence so research can generate solutions accessible to all.
The session concluded with thanks to attending researchers and a request that participants continue communicating about priorities and next steps. The transcript notes the meeting was produced by the Department of Health and Human Services; no formal votes or policy actions were recorded in the session.
Note on claims: the figure of “20000000 Americans” and the reported “170 plus symptoms” were stated by participants in the session and are presented here as participants’ claims; the transcript does not provide external verification of those numbers.
