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!"
 
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.'
 
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.
 
FNIH: 'RECOVER-TLC Webinar - November 2024'

'On November 21, 2024, NIAID and FNIH launched the first in a series of online webinars highlighting recent progress in the RECOVER-TLC program. Drs. Jeanne Marrazzo and Julie Gerberding welcomed the participants, who included more than 800 patients, advocates, care providers, and scientists from academia and life sciences companies. Dr. Joe Breen summarized our activities since the RECOVER-TLC Workshop convened in late September, and Dr. Elizabeth Geerling provided an overview of the over 300 agents that have been submitted to the intervention portal thus far.'

 
Note this: "RECOVER's deadline to submit long COVID research proposals is Feb. 1."

Dakota15 said:
NPR: 'Long COVID patients push to see federal research refocused on treatments'

"It's unconscionable that more than four years since this began, we still don't have one FDA- approved drug," says Meighan Stone, executive director of Long COVID Campaign

"What [RECOVER] lacks, really, is clarity of vision and clarity of purpose," says Al-Aly, saying he agrees that the NIH has had enough time and money to produce more meaningful progress.

Now the NIH is starting to determine how to allocate another $515 million of funding for long COVID research, which it says will have a significant focus on clinical trials. At the end of October, RECOVER issued a request for clinical trial ideas that look at potential therapies, including medications, saying its goal is, "to work rapidly, collaboratively, and transparently to advance treatments for Long COVID."

This turn suggests the NIH has begun to respond to patients and has stirred cautious optimism among those who say that the agency's approach to long COVID has lacked urgency in the search for effective treatments.

NPR contacted the NIH several times to ask about plans for this new chapter of RECOVER. The agency did not make anyone available for an interview, nor would it answer written questions via email.

Good science takes time, says Dr. Leora Horwitz, the co-principal investigator for the RECOVER-Adult Observational Cohort at New York University.

But to vet a range of possible treatments for the millions suffering now — and to develop new drugs specifically targeting long COVID — clinical trials are needed. And that requires money.

RECOVER's deadline to submit long COVID research proposals is Feb. 1.
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11/26/24, NIAID: 'First Webinar of Long COVID Treatment Initiative Highlights Early Progress'

'We expect to host the next RECOVER-TLC webinar in early January 2025'

'In December, NIAID, along with the National Heart, Lung and Blood Institute (NHLBI) and the National Institute of Neurological Disorders and Stroke (NINDS), will announce 20 new awards to fund RECOVER pathobiology projects. '

'Additionally, next month, NIAID and FNIH will begin distributing an online monthly newsletter sharing the latest RECOVER-TLC activities'
 
https://twitter.com/user/status/1866543043882434658
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There's mention of Recover VITAL, a trial of paxlovid and ritonvair. It's an odd clinical design.
Treatment 1 - 25 days of paxlovid
Treatment 2 - 15 days of paxlovid and 10 days of ritonavir +placebo
Treatment 3 - 25 days ritonavir +placebo

There's no proper control.

I think there will be 300 people with 'exercise intolerance', 300 with cognitive dysfunction, 300 with autonomic dysfunction.

https://twitter.com/user/status/1866543600185622931
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The outcomes seem a bit hopeless. For example, the primary outcome for autonomic dysfunction is given as 'Orthostatic hypotension questionnaire'. The primary outcome for exercise intolerance is a modified DePail Symptom Questionnaire - PEM. And the secondary outcome is an endurance shuttle walk test. If that is the 6 minute walk test, then that does not show sufficient discriminating power in mild ME/CFS.
 
NIH Director Dr. Bertagnolli at NIH ACD today in kick-off welcome speech portion:

"To put it simply, we need to evaluate more potential treatments for Long COVID. This is a pervasive & very challenging disease. In this process, we're ensuring that patients are meaningfully engaged as our true and equal partners in research. To put it quite directly, we cannot succeed without having patients at the forefront, particularly of these clinical trials. The only way to design and carry out effective research for Long COVID. Our goal is to address the needs of those suffering from Long COVID by being very transparent in our approach, flexible and responsive to a changing landscape that they are living everyday."

https://twitter.com/user/status/1867229731219030244


https://twitter.com/user/status/1867249845574004849
 
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12/12/24: 'NIH adds funds to long COVID-19 research, advances work on new clinical trials'

'NIH recently received approval to reallocate $147 million to support ongoing efforts of the RECOVER Initiative'

'This allocation is in addition to the $515 million that NIH announced earlier this year, bringing total new funding to $662 million.'

'RECOVER will allocate approximately $300 million to RECOVER-TLC clinical trials'

'Long COVID is a complex and debilitating chronic condition affecting people’s ability to work, attend school, and participate in their regular activities. Alleviating the suffering of so many individuals, their families, and their caregivers is a priority of NIH. We look forward to further advancing our understanding of long COVID and advancing prevention and treatment.'
 
12/10/24, 'A Frank Conversation with Long COVID Research Leader Janelle Linton, MPH'

'Linton, MPH of NYU Langone is the Assistant Program Director for Community Engagement in the Long COVID study called RECOVER'

Linton: "We're fighting every year to make sure that we keep getting funded to do this work."

"The public is waiting - they're waiting for results - they want to know, especially since we are a billion dollar study."
 
Nath seems openly still only interested in early intervention/ prevention and seems to be happy, as probably lbh many are if unchallenged, to just write the damaged, long term with ME/CFS off
, ie reducing ME/CFS research funding, despite saying ME/CFS has a damage that’ll be harder to treat.
 
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