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Washington Post, Editorial Board: 'Long covid might presage a wave of disability claims. Get ready' 'Long covid is a looming potential challenge to public health and governments around the world’ 'The nation must prepare to cope accurately and compassionately with a wave of illness and...

I’m skeptical too but surprised at the accuracy of the criticism, which to me indicates (to the leadership of this House Committee at least) that this issue of RECOVER is squarely on their radar. Sent my testimony indicating that we need robust funding in this space, but highlighted where we...

@Sean - I agree, which is why I wrote to NIHReform@mail.house.gov and first.opinion@statnews.com to clarify what is needed from this community's perspective (from my lens at least) from this agency. Hoping others will do the same too.

Also if any are interested in an op-ed on the NIH after the reform proposal, STAT News is interested in community thoughts (sent out to their subscribers today) “What do you think? Is the NIH doing its job, or does it need to be reformed and restructured? Weigh in by sending an email to...

Sharing a local report on the NASEM work (Minneapolis, MN). KSTP 5 News: “National Academies’ long COVID definition gives patients hope” “I’m really hoping that the change in this will give us some better options for treatments, help, even just guidance..” said Jesse Atwood, a long COVID...

(part 2) Sharing from the 22-page official plan release, on Page 17: '"Recently, there have been several instances of missteps in the NIH’s grant review and prioritization processes that have prevented successful research outcomes. For instance, the NIH’s RECOVER Initiative, which launched in...

(mods feel free to move where most appropriate) 'House Energy & Commerce: 'Chair Rodgers Unveils Framework for NIH Reform, Requests Stakeholder Input’ 'Stakeholders who wish to submit any feedback on the framework or provide additional thoughts, ideas, and suggestions for reform can do so by...

Institute for New Economic Thinking: “Debilitating a Generation”: Expert Warns That Long COVID May Eventually Affect Most Americans ‘..Dr. Phillip Alvelda highlights the imminent dangers of long COVID, criticizing governments and health agencies..’ “Dr. Phillip Alvelda, a former program...

@forestglip - Possibly Atul Butte, Chief Data Scientist at University of California Health. He live-tweeted the conference, and I think (?) that picture is him. https://x.com/atulbutte

As I didn’t see the recordings up yet, I shared a short thread on Twitter for any that would like to view in the meantime. This is probably duplicative, and mods feel free to delete or move as needed. Sharing if helpful to anyone. Excerpts: Koroshetz: “COVID is kind of a natural experiment to...

Posts have been moved from a thread on the NIH ME/CFS intramural study @Laurie P the 4 patients that I know in the study all have POTS and said it indicated as such on the TTT testing in the study

Did Jeannette state in her work (and blogs) if she was submitting this to anywhere (Office of Research Integrity with HHS, etc.)?

(sharing in here too, but Mods you can delete if you prefer just in other thread) KQED: 'National Academies Pushes for New Definition of Long COVID' 'Long COVID afflicts an estimated 17 million Americans. We’ll talk about the latest Long COVID research and hear your experiences' Guests: Dr...

KQED: 'National Academies Pushes for New Definition of Long COVID' 'Long COVID afflicts an estimated 17 million Americans. We’ll talk about the latest Long COVID research and hear your experiences' Guests: Dr. Linda Geng, Stanford Long COVID Collaborative Dr. Linda Geng: "There wasn't a great...

Dr. Jeanne Marrazzo (NIAID Director) at Demystifying Long COVID Conference last week in Boston on LC: "As you can tell I'm very interested in this - but, confused, frustrated & eager to learn and to help figure out what's really going on here and how we can figure out how to make people better."...

Sharing this message I received today from an individual with HHS, if helpful to know for anyone still working on this here: "Our office did refer this complaint to the Office of Research Integrity ( https://ori.hhs.gov/ ) which does deal with issues like research misconduct and...

Medscape: 'MDs' One-Word Summary of Long COVID Progress: ‘Frustration' 'There is an urgent need for more funding, long COVID clinicians, multidisciplinary clinics, and education for non–long COVID physicians and specialists, doctors said.’ "Patients are still being diagnosed every day, yet the...