USA: The RECOVER Initiative - Long Covid research

Sharing in case this wasn't shared out yet here.

"We are beginning to plan for the next phase of RECOVER clinical trials. We will apply lessons learned from initial RECOVER studies and trials to develop a new program called RECOVER-Treating Long COVID (RECOVER-TLC)”

"We need your help to make RECOVER-TLC a success. To that end, please save Sept. 23-25 to participate in a RECOVER-TLC kick-off meeting, to be held both in person and virtually. We are inviting Long COVID researchers, healthcare providers, people affected by Long COVID, advocacy organizations, and Federal policymakers to come together to discuss the structure and governance of RECOVER-TLC, assess the current research landscape, and help plan future NIH Long COVID clinical trials."

Worth noting that “the new program will be led by NIAID”, as Marrazzo has apparently been a strong ally so far for this field from those that know more than I.

 

I posted a gift link to the Washington Post website (free for two weeks, but sadly it requires an email address) on the thread dedicated to the Washington Post Live event:

https://www.s4me.info/threads/long-...th-9am-usa-east-coast-time.39511/#post-545000

The website has several video clips plus a full transcript.

I posted a youtube link to the full event in the same post.

 

Email sent, for some reason, to those of us signed up to ME/CFS Information email list.

News from NIH: Planning for the Next Phase of the RECOVER Initiative

Dear RECOVER & Long COVID Community:

We are writing to let you know about an important evolution in NIH’s operational approach to clinical trials to evaluate therapeutic interventions for Long COVID. The NIH Researching COVID to Enhance Recovery (RECOVER) Initiative has created a research engine of unprecedented scale and scope, including one of the largest and most diverse Long COVID cohorts in the world. RECOVER is led by three NIH Institutes convened by the NIH Director in 2020 to address the multi-system nature of Long COVID: the National Heart, Lung, and Blood Institute (NHLBI); the National Institute of Allergy and Infectious Diseases (NIAID); and the National Institute of Neurological Disorders and Stroke (NINDS).

To date, research conducted through the RECOVER Initiative has greatly contributed to our understanding of Long COVID, even as the condition has continued to evolve. It also has provided valuable experience in designing and conducting clinical trials to address patient-centered endpoints for this novel and complex condition. Most importantly, we’ve learned from the more than 30,000 people who have volunteered to be part of ongoing RECOVER studies and clinical trials. We are grateful for their continued participation and are looking forward to the valuable results that will emerge when the first round of RECOVER clinical trials is completed.

We are beginning to plan for the next phase of RECOVER clinical trials. We will apply lessons learned from initial RECOVER studies and trials to develop a new program called RECOVER-Treating Long COVID (RECOVER-TLC). As the current RECOVER clinical trials and studies continue, the emerging data will inform the ongoing work of RECOVER-TLC. The new program will be led by NIAID, leveraging its expertise in infectious and immunologic diseases and conditions and its experience in conducting COVID-19 clinical trials.

The new 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. Importantly, RECOVER-TLC will provide additional clinical trials capacity, building upon existing RECOVER clinical trial sites to maintain the involvement of investigators and participants who are deeply invested in Long COVID research and clinical care.

To make sure that RECOVER-TLC leverages all that has been learned over the past three years, we will call upon the broad research community to help identify promising therapeutic approaches and propose study designs that will produce results that are needed by those affected by Long COVID. This effort will be modeled on the successful process used in NIH’s Accelerating COVID-19 Therapeutic Interventions and Vaccines (ACTIV) program but modified to address newly identified biological mechanisms and unique symptoms associated with Long COVID.

We need your help to make RECOVER-TLC a success. To that end, please save Sept. 23-25 to participate in a RECOVER-TLC kick-off meeting, to be held both in person and virtually. We are inviting Long COVID researchers, healthcare providers, people affected by Long COVID, advocacy organizations, and Federal policymakers to come together to discuss the structure and governance of RECOVER-TLC, assess the current research landscape, and help plan future NIH Long COVID clinical trials.

More details about the meeting agenda and registration information will be coming soon. Be sure to sign up for email updates to receive the latest updates. We are excited about this new phase and look forward to your active participation and continued partnership.

 

Just wanted to share RECOVER - TLC registration for Sept. 23 - 25: https://web.cvent.com/event/11825c6...d-860a-f4df948e7200?rt=Z9opfogxn0eAYYkLK-tbCg (registration button at top of page)

Here is the website announcement from the RECOVER site

(Per the link above, the deadline to register is August 30, 2024)

 

Attendee list so far below - I know agenda will come out at some point in the following weeks.

(also I believe there is an option to not register with your name, so not everyone may reflect in the populated list)

Some attending names on this list so far include Robert Phair (Stanford/OMF), Linda Tannenbaum (OMF), Lucinda Bateman, Leonard Jason, Mady Hornig (Columbia), Stephanie Grach (Mayo Clinic), Lindsay McAlpine (Yale), Maureen Hanson (Cornell), Nancy Klimas, Jaime Seltzer (MEAction) and more.

https://web.cvent.com/event/11825c6...4-baee-972ae8dfa435?rt=Z9opfogxn0eAYYkLK-tbCg

 

I registered but I think I said no to adding my name to the public list. I didn’t know it was possible to attend in person, but that option is closed now.

 

From the U of Miami LC webinar today featuring Klimas, Al-Aly, Palacio and others

https://twitter.com/user/status/1828460222010016226


https://twitter.com/user/status/1828461975547896128

 

https://twitter.com/user/status/1828466634706612321


Full recording of the webinar from today, "Long COVID: An Emerging Global Health Crisis"

 

https://twitter.com/user/status/1828813923291656397


Dr. Ana Palacio asks: “What are the priorities for the clinical trials. What would you like seen?”

Dr. Al-Aly: “First & foremost, the voice of the patients, and I definitely don't want us to be thinking about clinical trials without patients really at the helm of that table and I'm really sorry to not be very enthusiastic about RECOVER. But you know, so far they in multiple steps, they sort of ignored the patient's voice, and that cannot be. I mean, this is ultimately about discovering treatment to help patients with Long COVID, right?

So, patients so first of all, really patients at the helm of it or at the top of that table. And then they need to listen to scientists. People like Nancy and others who have been really thinking about ME/CFS, thinking about Long COVID for a long time and amass all this expertise and leveraging all that expertise and all that know how, and really charting the way forward. That's really very important.

Because we’ve seen them over the past several years. Sort of going to newbies who've been, you know, thinking about Long COVID for two minutes and then and it's like - oh, you're gonna do this. You're gonna do this clinical trial for exercise? I'm like, oh, no, you know, people like Nancy and others have been have been thinking about this, and they know what works and what doesn't, then no, what sort of should really put be placed at a higher priority, and what should be deprioritized, so to speak.

So those are really very, very important strategic considerations, and charting the way forward, listening to patients and leaning on true expertise that has been amassed through really trials and error and trials and tribulation for decades, and studying ME/CFS and other infectious-associated chronic illnesses.”

 

8/28/24: "Two RECOVER study sites – ILLInet RECOVER and RECOVER Boston – collaborate with community-based organizations on Long COVID summit to improve understanding and treatment of the condition."

'On September 12, 2024, ILLInet RECOVER and UI (University of Illinois) Health will host a Long COVID Summit.'

'This summit will bring together experts, community leaders, lawmakers, and advocates to improve understanding of Long COVID and discuss how to better help the people and communities who have been impacted by the condition.'

Summit agenda listed here.

 

This is the agenda. It looks really bad. Like there are only one or two people who have an understanding of MECFS.

https://recovercovid.org/sites/default/files/docs/RECOVER-TLC_Workshop-Agenda.pdf

 

I think that agenda encompasses an abundance of knowledge with the individuals asked to participate, but to each their own and of course will reserve judgment until the conference commences.

I have had nothing but positive interactions with Davenport, Seltzer, Peter Rowe, Al-Aly, Meriquez Vázquez, McCorkell, Krishnan, Koralnik, Azola, Krumholz, Davis, Utz, Deeks, Peluso, Moore Vogel, Patterson, Geng, Breen, and Singh. This is just my experience, but each of those individuals to me, displayed a pretty apt knowledge of ME, in my opinion (and from what I have visibility to, their track record would probably reaffirm that notion).

I’d encourage to not slander this whole group (or questioning ME expertise) before they even take the stage, but just my two cents.

 

Davenport and Seltzer are fine! So is Lipkin! I even like Nath!

It is not about positive interactions. My criticism is that if they are interested in researching
Covid triggered MECFS, then there are better, more established scientists they could invite. I don’t really wish to litigate this whole thing but here is a sample.

Al Aly is basically calling every symptom ever recorded, including things like constipation as Long Covid. He also just published a very long review on Long Covid, that @Andy said mentioned MECFS only twice. How does that help MECFS patients (including Covid triggered MECFS)?

We have had threads about AP dabbling in pseudoscience.

Here is @Jonathan Edwards on Krumholz

 

Attached is the agenda for the Long COVID Summit tomorrow

 

I’ve been out of the research loop for a long while but off top of my head I don’t recognize most of the invitees, only a few established ME/CFS researchers. Also seems like everyone funded or associated with OMF is absent from this meeting

 

Call for US RECOVER Initiative to include ME/CFS

ME Research UK Facebook:

Leading ME/CFS researchers have provided a roadmap on how the US's NIH can successfully integrate ME/CFS into the RECOVER Initiative and provided areas of mutual interest to advance the field. The suggestions - from clinical trials to the utilisation of research networks - led the signatories to say they were looking “… forward to a fruitful collaboration and are excited about the future this initiative promises for patients with Long COVID, the ME/CFS community, and beyond.”

RECOVER National Institutes of Health Researching COVID to Enhance Recovery (NIH RECOVER) initiative was allocated $1.15 billion, including support through the Rescue Plan Act 2021.

https://www.meresearch.org.uk/call-for-us-recover-initiative-to-include-me-cfs/

 

There is a new RECOVER-linked study, "Prevalent Metformin Use in Adults With Diabetes and the Incidence of Long COVID: An EHR-Based Cohort Study From the RECOVER Program". From the NIH news page:

NIH news release | Link to trial | PDF

 

https://twitter.com/user/status/1837210699522576479


https://twitter.com/user/status/1837221063165628823