USA: The RECOVER Initiative - Long Covid research

I appreciate the blog but we need action as this is the reality for ME/CFS:

https://twitter.com/user/status/1576960454676557824

 

Oh, for sure. I stand by my original comment--I'm very proud the NIH and CDC speak of ME/CFS as a serious problem. But there's not enough action. They're consulting experts in post-viral syndromes in the RECOVER trial, publishing good material about ME, and funding some research. That's good, but we need far more.

 

Keynote Presentation: Advancing Toward Recovery from Post-Acute Sequelae of SARS-CoV-2 Infection (PASC): The NIH RECOVER Initiative with Live Q&A


OCT 19, 2022 12:00 PM PDT

Walter Koroshetz, MD
Director of the National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health

register at link
https://www.labroots.com/webinar/ke...elae-sars-cov-2-infection-pasc-nih-recover-in

 

ARUP’s Clinical Trials Group Assists in Multisite Study Aimed at Unravelling the Mysteries of Long COVID-19

full article
https://www.aruplab.com/magnify22/arups-clinical-trials-group-assists-multisite-study-long-covid-19

 

The Good, the Bad, and the Strange: the RECOVER Initiative Long COVID Grants, Cort Johnson

Some bogus stuff here— @dave30th—possible for you to inquire as how to how an HIV study got funded here—thanks.

https://twitter.com/user/status/1593610811972276225

 

Summary

• The RECOVER Initiative has spent hundreds of millions of dollars building out the infrastructure to support its big study – following and analyzing 18,000 people.
• Grants from outside researchers, though, are important as well. The vast majority of potential long COVID researchers, after all, reside outside the RECOVER Initiative and they can provide creative insights that Initiative investigators might miss.
• In August RECOVER released the titles of the 40 grants it funded to the tune of $37 million dollars. This blog assessed them for their potential impact on the ME/CFS subset of long COVID and ME/CFS itself.
• Because, strangely enough, almost all the grants do not show up in the NIH’s Reporter database of NIH-funded studies, much detail was missed.
• It was hard understanding how 15% of the grants met the definition of a long COVID grant. A further 24% of the grants focused on the non-ME/CFS subset of long COVID (such as diabetes, kidney disease, etc.). About 60% of the grants clearly focused on the ME/CFS subset of long COVID.
• As expected immune system grants lead the pack and the strong focus on autoantibodies was welcome. EBV reactivation has shown up in several major studies but unfortunately was assessed in only one. The blood vessels and cardiovascular system, and the metabolism – two areas the NIH might have passed on – received good interest – as did the nervous system and brain.
• Surprisingly, the autonomic nervous system – obviously a key player in long COVID – received only one study. Unfortunately, no exercise physiology studies – so important to the field of ME/CFS – were funded. Neither were any microbiome or mitochondrial studies.
• Overall, the slate of studies seemed strong but the number of studies being funded and the amount of funding devoted to them, though, was surprisingly low. RECOVER is a $1.15 billion Initiative yet it provided all of $40 million to individual research projects – just 2 1/2 times the funding ME/CFS gets in a year.
• Why that was so and other questions have been forwarded to the RECOVER Initiative.

 

I have been really concerned about what the RECOVER programme has been funding for a while. Initially they were funding absolutely nothing but data collection, the entire thing was just the biggest symptom and fluids collection study in the entire world of all time, a true master use of 500 million USD. But now it seems the little over half of the rest of it is being aimed at research and I am not surprised to find a lot of it is barely applicable to the disease itself. I sure hope they come up with something but they have I think avoided the most promising areas of research so far so I don't anticipate much of value coming out of it.

 

I find the Health Rising piece confusing - it seems to require that: the long term effects of COVID 19 substantially = Long Covid and that in turn Long COVID substantially = ME/CFS, when no part of that line of equivalences has so far been shown to have significance.

From a public health perspective, which is what surely the US Congress had in its collective mind when it required the NIH to commit $1.15 billion to studying the long-term effects of COVID, all health consequences of COVID infection would require attention, and which includes a vast range of sequelae only a fraction of which are common to an ME/CFS diagnosis. The COVID19 pandemic may as a simple fact of itself, require greater investigation of ME/CFS but so far none of the epidemiology strongly indicates that there is a major increase in ME/CFS incidence following COVID19 infection.

I know that's not what many people expect and there may be all sorts of failings that mean post COVID ME/CFS incidence is not being recognised or recorded, but for whatever reason it isn't there strongly in the data while all sorts of other health problems are and it's not surprising if those are attracting research funding rather than ME/CFS.

 

But there are funded projects that are not related to the long-term effects of Covid, apart from the MECFS subset.


The Strange – Long COVID Grants (???) – 14%
I would be shocked if Congress had these studies in mind when it funded the RECOVER project. It’s possible that some of these studies added long COVID cohorts to ongoing studies. Still, they seem like a reach.

• Elucidating Genetic and Environmental Second Hits in Racial and Ethnic Minorities with APOL1 High-Risk Genotypes – this is a kidney disease study that was ongoing before COVID-19 and does not mention long COVID
• Imaging Neuroglial Mechanisms of Neuropathic Pain-Opioid Interaction in HIV – started in 2018, does not mention long COVID
• Prenatal Immune Activation and Maternal Mental Health as Predictors of Infant Sleep and Cognitive Development
• Role of NLRP3 Signals in Ischemia/Reperfusion-Induced Organ Injury
• GenoMISC: Genetic Determinants of Multisystem Inflammatory Syndrome after SARS-CoV-2 Infection in Children (MIS-C) – multisystem inflammatory syndrome is a highly dangerous, nasty syndrome that often lands children in intensive care but it occurs in the first couple of weeks after an infection; i.e. it’s not a long COVID issue.

 

I feel like it should be pointed out that the RECOVER initiative has hired at some point a communications director, which may or may not be the case. There is someone in charge of communicating what this giant secretive project is doing. Seriously.

I guess it's only for communications within the bubble. Because basically nothing is openly communicated. Seriously looks like if there's ever an investigation of this, it will find a lot of money misused as blatantly as when someone at the CDC did that.

From move fast and break things to move slow and leave the already broken things broken. Institutional mentality with startup-level oversight and accountability.

 

The last of those is illustrative of the point I was making - the instruction from Congress to the NIH is to commit funds to investigate: "the long-term effects of COVID", a terminology which clearly isn't limited to whatever Long Covid may include and can logically include the study of any impact of COVID on any group of affected patients.

It is true that the APOL1 study doesn't mention COVID although it's start date is given as 14/12/20, so after COVID hit, but science doesn't work on every relevant point being mentioned in every study title or description and in this case there's clear relevance to other ongoing work: COVID-19 and APOL-1 High-Risk Genotype-Associated Collapsing Glomerulonephritis

The HIV study does seem an outlier although there are comparisons to be made between HIV and COVID and a subset of PASC patients will be taking opioids for comorbidities which makes this relevant:

"The precise mechanisms by which opioids interact with the viral infection to exacerbate neuropathic pain have yet to be fully elucidated, but likely involve the synergetic dysregulation of neuro-glial interactions, including glial activation and alterations in the excitation-inhibition balance of the brain."

There's also the possibility that this HIV study is a legacy orphan of NIH carving out a whole new budgetary area at the behest Congress.

I couldn't find any documentation on the Prenatal Immune Activation study but the named researcher is working on COVID and maternal health - it would be highly significant if COVID in pregnancy has long term impacts on the child !

The objection to the Ischemia/Reperfusion-Induced Organ Injury study seems bizarre - it's an established impact of COVID infection: Liver injury in COVID-19: Detection, pathogenesis, and treatment and if the patient survives there's likely to be lifetime (i.e long term) impacts.

 

Merged thread

Vascular Pathophysiology of Long Covid—research review

https://www.youtube.com/watch?v=x4tsnvC0UxM

 

There’s actually about 18 of these videos—I don’t know if you want to highlight these somehow @Trish @Hutan?

https://m.youtube.com/@RECOVERcovid/videos

 

Posts moved from the Long Covid in the media thread

Per Dr. Leonard Jason feature today from Newswise, it appears that there will be a ME/CFS cohort/comparative group included in the RECOVER Initiative.

Newswise: "Researcher Leonard A. Jason pushes discovery on long COVID, ME/CFS"

"He is a vocal advocate and serves on the diagnostics committee of the NIH’s RECOVER initiative, which is studying more than 17,000 people to learn about the long-term effects of COVID-19. Recently, Jason won NIH’s support to include an ME/CFS group as part of the work."

 

Worth every penny.

 

merged thread

In Nature

Long COVID exercise trials proposed by NIH raise alarm
Advocates ask the US biomedical agency to rethink the design of its RECOVER initiative, citing possible harm and funding waste.

Patients and patient advocates are calling on the US National Institutes of Health (NIH) to reconsider its decision to include exercise trials in its RECOVER initiative, which aims to study and find treatments for long COVID. They argue that a large proportion of people with long COVID have reported experiencing post-exertional malaise (PEM) — a worsening of symptoms such as fatigue, difficulty regulating body temperature and cognitive dysfunction, after even light exercise — and worry that putting certain RECOVER participants through exercise trials could cause them harm. In a petition and multiple letters, the advocates request that the NIH and affiliated physicians explain their rationale for this testing and share the trial protocols.

https://www.nature.com/articles/d41586-023-00900-w

 

"Long COVID isn’t the first disease for which people have reported experiencing PEM. People who have myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), have long reported exacerbation of symptoms after overexertion that make their day-to-day functioning difficult. Similar to long COVID, ME/CFS often develops after a viral illness; its symptoms include PEM, cognitive impairment and joint and muscle pain."

"Although it seems counter-intuitive that exercise — normally considered an ingredient of good health — can cause harm, researchers have confirmed some of the physical effects of PEM through controlled studies. Scientists have measured people’s heart rate and oxygen intake during 2 maximal-exertion exercise tests spaced 24 hours apart. They found that those with PEM perform noticeably worse on the second day1. Meanwhile, for those without PEM — a group that included athletes, sedentary people and people with conditions such as heart failure and cystic fibrosis — results were similar, if not identical, on both days. Studies have also shown unusual patterns in gene expression2, metabolism3 and cognitive functioning4 after exertion for those with PEM."

"As researchers find out more about long COVID, it has become clear that many people with the condition meet the criteria for ME/CFS. In a study published online late last year5, researchers reported that of the 465 people with long COVID surveyed, 58% could be categorized as having ME/CFS."