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Star Tribune: "Frustrating futility on long COVID" "So far, the National Institutes of Health's progress has left patient advocates and some scientists underwhelmed. Accountability and oversight are needed." "It didn't seem to be a house-on-fire moment, which it should have been," Osterholm...

Just sharing, @B_V Star Tribune: "Frustrating futility on long COVID" "So far, the National Institutes of Health's progress has left patient advocates and some scientists underwhelmed. Accountability and oversight are needed." "It didn't seem to be a house-on-fire moment, which it should...

Thanks, @B_V! Looking forward to reading. I think my local press (Star Tribune in Minneapolis) is planning on publishing a piece next week on RECOVER / a follow-up to the STAT News feature by Betsy Ladyzhets. Will share here if published.

Hey @B_V! As August comes to a close here, was just wondering if WP is still slated to publish this soon, from what you know? Thanks for sharing this with us.

Correct. I'll flag to the 2 CU PI's I've connected with on RECOVER.

From Dr. Whittmore at NINDS: "The recent publication from Dr. Hwang’s group at NIH is a collaboration with NINDS and Dr. Nath as part of the NIH Intramural research on ME/CFS. I think the results are very interesting and potentially very important, but need to be replicated by another group and...

Just trivial sleuthing again, but noticing that NIAID Director 'liked' this today and hopefully is following closely too with NHLBI/NINDS.

Moved post Has this already been shared? Science: "A protein that disrupts cells’ energy centers may be a culprit in chronic fatigue syndrome" New study offers clues as to how exhaustion could arise in people with ME/CFS—and potentially related conditions such as Long Covid...

Moved post Apologies, if this has already been posted

I attended one of the regional RECOVER Town Halls last night on the clinical trials. Sharing below if interested. Some more info embedded in the thread.

I sent the STAT News reporting to her yesterday, about NIH's underwhelming RECOVER trials. She replied back "Thank you for the outreach. Really hope we can make some progress ASAP as I know many are suffering." Just sharing for visibility.

Obviously very very trivial again but I did see that Dr. Marrazzo (new NIAID Director) “liked” this below yesterday on Twitter from Madeline Miller who wrote the Washington Post feature on LC yesterday.

Just sharing this S/O in Mass ME's August Newsletter today

Obviously just a trivial thing, but the new NIAID Director did "like" this yesterday on Twitter (I'm not calling it X...)

@Hutan Marrazzo was a PI at UAB for the RECOVER Initiative, also if not stated. "SARS-CoV-2 has been a challenge in so many ways, not the least of which is the conundrum of long COVID, or PASC,” said Jeanne Marrazzo, M.D., director of the Division of Infectious Diseases and lead investigator...

It appears Pfizer has just issued a RFP (Request for Proprosal) Pfizer Independent Medical Education RFP Updates in Post-COVID Conditions: Potential Causes, Assessment, Testing, Management, and Ongoing Research 'Through this RFP it is our intent to support educational programs on post-COVID...

Star Tribune: 'Budget that expands Minnesota health care, abortion access, heads to governor' 'The HHS bill includes research into long COVID and support for people suffering from the post-pandemic condition.' If this is the Senate version of the HHS bill that has passed to the Governor's desk...

Interesting. It doesn't let me read it here in the US unless I subscribe.

Anyone have access to this Boston Globe piece?

(fairly unrelated) Just wanted to state that Dr. Whittemore (along with Dr. Koroshetz) is aiming to try to attend the May 11th Millions Missing event with the Minnesota ME/CFS Alliance & patient community I thought even in attempting in *wanting* to be present at that was a somewhat nice...