USA: The RECOVER Initiative - Long Covid research

Message that came through today:

"Greetings,

Researching COVID to Enhance Recovery - Treating Long COVID (RECOVER-TLC) is excited to announce a virtual webinar that will be co-hosted by the National Institute of Allergy and Infectious Diseases (NIAID) and the Foundation for the National Institutes of Health (FNIH) next week on Thursday, November 21, from 2:00-3:00 PM EST. This live webinar also will be recorded and posted online so it can be viewed at later dates.

Dr. Jeanne Marrazzo, Director NIAID, and Dr. Julie Gerberding, Chief Executive Officer of the FNIH, will begin the webinar with brief introductions. Dr. Joseph Breen (NIAID) will present an update on the status of RECOVER-TLC overall and Dr. Lizzie Geerling (FNIH) will provide a summary of proposed therapeutic agents submitted to the RECOVER-TLC portal to date.

The remaining portion of the webinar will be dedicated to answering questions or comments about RECOVER-TLC. To maximize the number of questions that can be addressed during the webinar, we are accepting questions and comments ahead of time. Any questions you would like to submit can be emailed to recover-tlc-submissions@nih.gov. Audience members also will be able to pose questions to presenters live during the webinar.

A registration link with Zoom information will follow this announcement in the coming days. We look forward to this opportunity of providing updates on RECOVER-TLC and addressing questions from the community!"

 

'Holistically' thinking about one thing. The same old thing.

 

10/11/24, NIH Record: 'Experts Convene at NIH to Discuss Long Covid'

'The three-day workshop took place in the John Edward Porter Neuroscience Research Center on NIH’s campus in September'

'..180 in-person and more than 1,200 virtual participants..'

'NIAID will lead the new program, leveraging its expertise in infectious and immunologic diseases and conditions and its experience in conducting Covid-19 clinical trials. This program will provide a clear path for ongoing scientific and community engagement to assess new ideas, identify potential therapeutics and biologics, and execute innovative study designs.'

 

https://twitter.com/user/status/1859680694345269700


Julie Gerberding, CEO of the Foundation for the National Institutes of Health (FNIH) & former CDC Director: "Long COVID is a national emergency and important priority for our government. We have Congressional bipartisan support. This will work get done, the work will go forward."

 

The Sick Times: “RECOVER-TLC is moving toward new clinical trials, initiative leaders share in webinar”

Julie Gerberding from FNIH: “Even if there are significant changes in administrative overview of the NIH, the work will go forward.”

https://t.co/3u13RgjXOq

 

I would be curious to know your reaction to the meeting, @Dakota15 and others. I came away feeling more frustration than hope. We are almost 5 years into long COVID and we are *just now* having conversations about the kinds of drugs that people want to see studied? Not to mention, I get the sense that everything is operating in series rather than in parallel, like it feels like they won't even start thinking about study design until they decide what drugs to pursue...I can't help but think that a lot could be prepared for early on even if the exact details are not known to make things run much more smoothly.

I wasn't sure if I should be discouraged or encouraged by seeing that over 70% of submissions of drug targets came from patients. I am glad patients are able to provide input. But, do researchers or people from drug companies have no ideas? The fact that LDN was the top submission when we don't have convincing evidence that it helps was just so discouraging.

And lastly, I just feel so tired of the refrain about all the hard, tireless work that is being done by NIH on our behalf. Please let the results do the talking.

 

@wingate I think those are all fair concerns.

There's definitely a bit of an underwhelming feeling in the sense that this is happening now, 5 years later. It doesn't make sense to me either.

I don't know if Julie Gerberding's testimony is lip service or reassuring yet, time will tell (in that they are saying regardless of changes, they will continue moving forward). I agree about letting results do the talking.