USA: The RECOVER Initiative - Long Covid research

Moved from the Long covid in the media thread

Just read a tweet in my emails so please excuse presentation.

Jennie Spotila has just posted


"Gosh! Lookit that! NINDS is funding clinical trials for #LongCOVID! Wow! And all these years they’ve been telling the #MECFS community that they couldn’t fund clinical trials for us. I guess it WAS possible after all!
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Walter J. Koroshetz
@NINDSdirector

#NIH with call out for #clinicaltrials trials to test treatments that may reduce suffering due to post acute sequelae of #COVID-19. PASC #ClinicalTrials in people 18 years or older. Learn more at http://RecoverCOVID.org/funding #RecoverCOVID #LongCOVID




10.15pm 9th May 2022
 
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Binkie4 said:
https://recovercovid.org/funding

Has there been research showing that new onset diabetes is a sequela to covid? Funding opportunities available for this and other sequelae.
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Nature: Diabetes risk rises after COVID, massive study finds

Quote:
The latest analysis found that people who had had COVID-19 were about 40% more likely to develop diabetes up to a year later than were veterans in the control groups. That meant that for every 1,000 people studied in each group, roughly 13 more individuals in the COVID-19 group were diagnosed with diabetes. Almost all cases detected were type 2 diabetes, in which the body becomes resistant to or doesn’t produce enough insulin.
 
Why Some Stay Sick
Unraveling Long COVID Alongside Other Post-viral Illnesses

"Well before the term long COVID was coined, scientists at NIH’s intramural research program (IRP) and elsewhere began preparing for the likelihood that some people would not fully recover after infection from the novel coronavirus. Also known as post-acute sequelae of SARS-CoV-2, or PASC, long COVID is still being defined but is often described as a constellation of symptoms that persist or appear one to three months or more after an acute infection. People experiencing PASC report a markedly lower quality of life and increased rates of anxiety and depression compared with before their illness. The most common complaints include fatigue, shortness of breath, musculoskeletal pain, and a host of neurological problems such as difficulty with memory and concentration, sleep disturbances, dizziness, and changes in the senses of smell and taste."

https://irp.nih.gov/catalyst/v30i4/why-some-stay-sick

I have also posted this article here, USA: National Institutes of Health (NIH) intramural ME/CFS study, as it talks about when results will be published of that study.
 
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There's at least starting to be talks of trials. It's really hard to say how much buy-in there is within the institution and ranks, how invested they are in working this out, which directly works out to how quickly they will just say "we've done our best, moving on". We barely see the occasional glimpses like this, always the same handful of people talking, with little to say.

In a separate study set to begin soon, Nath and NINDS clinical fellow Yair Mina plan to test corticosteroids and intravenous immunoglobulin (IVIg) treatments for neurological symptoms in people with PASC. Both medications have been used to treat other autoimmune and neurological disorders.

“If it’s an antibody-mediated phenomenon, the IVIg should probably work,” said Nath. But “if the antibody is causing damage to the endothelial cells, then the corticosteroid should probably work.”

Nath’s lab is also developing therapeutic compounds to target viral RNA. This type of treatment could be effective if PASC turns out to be caused by persistent viral replication. There is currently no conclusive evidence that coronaviruses persist in the body for months or years, but scientists continue to look. Tenure Track Investigator Daniel Chertow at the NIH Clinical Center has been leading a study to find SARS-CoV-2 RNA in an extensive list of body tissues, including the brain (preprint: Biol Sci, 2022; DOI.org/10.21203/rs.3.rs-1139035/v1).​
 
Moved from the "Long Covid in the media and social media 2022" thread.

https://www.cnbc.com/2022/07/08/lon...o-enroll-40000-in-1point2-billion-study-.html

U.S. scientists enroll nearly 40,000 patients in high-stakes, $1.2 billion study of long Covid

The National Institutes of Health is also planning to launch a “suite of clinical trials” on possible treatments in the coming months, according to Dr. Gary Gibbons, director of the National, Heart Lung and Blood Institute. Gibbons said NIH is in active discussions with the pharmaceutical industry on studying whether antivirals and other interventions can prevent or treat long Covid.

“These are exploratory with companies that have agents that may go before the FDA for approval,” Gibbons said. “There’s an interest both for public-private collaboration in this space and and we’re very hopeful that something will emerge in the next several months.”

However, Gibbons said NIH will likely need more funding from Congress for the trials given scope and complexity of the problem.

“We would anticipate to really fully do the clinical trial portfolio that patients with long Covid deserve, it probably will exceed $1.15 billion initial allocation that Congress awarded,” Gibbons said.
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Koroshetz and Gibbons said Recover is moving as quickly as possible to get clinical trials on treatments started. “We’re not going to wait four years and then do the trials. We’re going to whatever rises to the top in terms of ideas,” Koroshetz said.

Gibbons said NIH can’t provide a timeline right now on how long the clinical trials will take. Although NIH is soliciting concepts, it doesn’t have any finished plans for how the trials will proceed yet, said.

“It’s probably not a satisfying answer, but we can only move at the pace of the science,” Gibbons said. “If you establish the protocol, you have to enroll participants and you have to let the protocol play out. We don’t have a protocol yet in hand.”
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We’re not going to wait four years
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Well, it's been 2.5 years so I guess that if you put a larger unnecessarily delay as comparison, a large unnecessary delay doesn't seem as bad. Still bad, though.

It's actually amazing that the fact that we warned about all of this is completely unacknowledged, might as well have never happened, even though it's still widely available to anyone who wants to check, it's all over social media and in hundreds of news media.

Almost everyone is still pretending this is all brand-new and unprecedented and no one could have predicted. Not much different than a century or millennia ago, when technology fails, we're still the same people who lived thousands of generations as hunter-gatherers, knowing only what we can see and barely at that.
 
I cannot find the thread for the NIH RECOVER initiative so will have to put this here.

The website has been updated to contain the various committees, workgroup and oversight teams. There is a taskforce called "Commonalities with Other Post Viral Syndromes Task Force", co-chaired by David Systrom. Other familiar names are Leonard Jason and Suzanne Vernon with prior experience in ME research. Also Emily Taylor from SolveME, unless it's another person of the same name. I also recognize Monica Verduzco-Gutierrez, a MD.

I guess that would be the list of names people have been asking for a few weeks.

https://recovercovid.org/who-we-are
 
rvallee said:
I cannot find the thread for the NIH RECOVER initiative so will have to put this here.

The website has been updated to contain the various committees, workgroup and oversight teams. There is a taskforce called "Commonalities with Other Post Viral Syndromes Task Force", co-chaired by David Systrom. Other familiar names are Leonard Jason and Suzanne Vernon with prior experience in ME research. Also Emily Taylor from SolveME, unless it's another person of the same name. I also recognize Monica Verduzco-Gutierrez, a MD.

I guess that would be the list of names people have been asking for a few weeks.

https://recovercovid.org/who-we-are
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For those of you who can't find it, it's listed under the "RECOVER Leadership" heading, under "Pathobiology task forces" and "Commonalities with Other Post Viral Syndromes Task Force".

This is exciting. They're consulting with ME/CFS specialists!
 
There was an official response to the list of post-infectious illness experts involved in the RECOVER initiative:



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rvallee said:
There was an official response to the list of post-infectious illness experts involved in the RECOVER initiative:
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Wow, that's pretty solid. They're collaborating with people from the Bateman Horne Center, Dr. Systrom, Dr. Klimas, Dr. Bonilla. This is almost a who's who of ME/CFS experts, plus specialists in other conditions I haven't heard of. The NIH is likely to take the connection between LC and previous illnesses seriously.
 
A link to the above document was sent out to the Trans-NIH ME/CFS Working Group email list.

"A list of post-infection illness experts involved in the NIH’s RECOVER Initiative is now available on the RECOVER website: https://recovercovid.org/docs/508C-PostInfectionIllnessExpertList.pdf

This list represents only individuals who have confirmed their area(s) of expertise. However, the list is likely to expand as others confirm and as the Initiative continues.


Regards,

The Trans-NIH ME/CFS Working Group"
 
This was published on the NIH's Director's blog.

"Understanding Long-Term COVID-19 Symptoms and Enhancing Recovery

We are in the third year of the COVID-19 pandemic, and across the world, most restrictions have lifted, and society is trying to get back to “normal.” But for many people—potentially millions globally—there is no getting back to normal just yet.

They are still living with the long-term effects of a COVID-19 infection, known as the post-acute sequelae of SARS-CoV-2 infection (PASC), including Long COVID. These people continue to experience debilitating fatigue, shortness of breath, pain, difficulty sleeping, racing heart rate, exercise intolerance, gastrointestinal and other symptoms, as well as cognitive problems that make it difficult to perform at work or school.

This is a public health issue that is in desperate need of answers. Research is essential to address the many puzzling aspects of Long COVID and guide us to effective responses that protect the nation’s long-term health.

For the past two years, NIH’s National Heart, Lung, and Blood Institute (NHLBI), the National Institute of Allergy and Infectious Diseases (NIAID), and my National Institute of Neurological Disorders and Stroke (NINDS) along with several other NIH institutes and the office of the NIH Director, have been leading NIH’s Researching COVID to Enhance Recovery (RECOVER ) initiative, a national research program to understand PASC."

...

"It is important to note that post-viral conditions are not a new concept. Many, but not all, of the symptoms reported in Long COVID, including fatigue, post-exertional malaise, chronic musculoskeletal pain, sleep disorders, postural orthostatic tachycardia (POTS), and cognitive issues, overlap with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

ME/CFS is a serious disease that can occur following infection and make people profoundly sick for decades. Like Long COVID, ME/CFS is a heterogenous condition that does not affect everybody in the same way, and the knowledge gained through research on Long COVID may also positively impact the understanding, treatment, and prevention of POTS, ME/CFS, and other chronic diseases."

https://directorsblog.nih.gov/2022/...erm-covid-19-symptoms-and-enhancing-recovery/

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