NIH to Open Clinical Trials for Long COVID Post Exertional Malaise

Thank you for posting this!

Omg! Thank you! All of my specialists are at Duke.

I’m only posting this because I’ve been in NIH RECOVER for two years. I was invited to NIH RECOVER ENERGIZE and the paxlovid trial but passed, since I had neck surgery.
I posted this article on another thread. It notes concerns were raised about the ENERGIZE methodology and it was changed so it wouldn’t be dangerous. I don’t know if it’s valid or not or if it’s of any concern. RECOVER has been good for me and I have no agenda other than to share potentially objective data points for us to try to get towards a clearer view of the issue. Just search for “energize.” Maybe it will give you something you want to ask your doc or the study coordinator about. I’ve learned a lot from this board just about what questions to ask all the medical people. I hate having a reason to talk with all of them, but I’m glad they’re there, including the NIH.
https://thesicktimes.org/2024/05/31/they-bungled-it-nih-documents-reveal-how-1-6-billion-long-covid-initiative-has-failed-so-far-to-meet-its-goals/

Thank you for sharing. It’s my understanding the PEM clinical trial was criticized because they were at first going to assign patients with PEM to the exercise intervention. But based on what’s been established for some people with chronic fatigue syndrome and central sensitization (I’ve had central sensitization since before my COVID infection) overly aggressive and strict exercise can make the condition worse. But chronic fatigue and exercise is so misunderstood and providers tend to think I’m not trying hard enough or am a hypochondriac if I say I need to moderate the amount to minimize a flare.

I guess they made changes to the study protocol and now they’re not going to assign patients who meet the PEM diagnostic criteria to the exercise group specifically for safety reasons.

Personally, I’m excited about this because I had POTS and central sensitivity set off by a viral infection before COVID, but my COVID infection exacerbated my symptoms. This pacing protocol they’ll trial sounds almost exactly like what’s been prescribed to me for POTS, PEM, and chronic fatigue, and I was actually able to make progress. Maybe I’m in a subset of patients who does benefit from PT, but as long as it’s careful and guided by my symptoms. But I have so many problems trying to get PTs and providers to understand that exercising past my window of tolerance makes my condition worse because the “no pain, no gain” association with exercise is so pervasive.

There’s never been a large-scale clinical trial of this approach, although there have been some studies. Research is supposed to be unbiased but my hope is that if they do find a pacing strategy that is effective, it’ll provide at least one form of treatment we can have reasonable confidence can help at lease some of us. And hopefully it’ll raise awareness because they’re principles anyone could take to a PT or even implement at home.

There was a brief reference about the change to the clinical trial protocol here, and reading this article felt validating to me: https://www.theatlantic.com/health/archive/2024/01/long-covid-exercise-post-exertional-malaise/677242/

I have a subscription, but if it’s the one article you access, I think you can get to it for free.

I hope if you’re interested you’re able to get into the trial (and not get the “placebo” treatment)! Lol.

I just joined the NIH Paxlovid trial, and I get my first dose this week. I was assigned to the dysautonomia group (the others are post exertion malaise and brain fog). Then I saw this and…this is an intervention more up my alley, but all the sites aren’t posted yet. Still, I’m glad some things are moving forward.

One issue is that I never had fatigue. There seemed to be only certain categories that I didn’t seem to fit.

I'm wondering how to join an NIH trial or study. I have POTS and Long Covid symptoms (I think), especially PEM so I do believe I'd be a good patient to study. My whole life has changed since getting Covid in 2022. I went from being active and healthy to being sick and in pain most of the time. I appreciate everyone's posts and experiences detailed on this site as it makes me realize I'm not imagining it!

That's very similar to my experience. I was diagnosed with POTS and improved management of it until I got COVID in 2022 and I developed new symptoms, and my original symptoms got worse and never returned to baseline. I didn't think they'd take me because I had POTS before COVID infection, but they said since I had new and worsening symptoms, it would still be okay as they have other people in the study who also had underlying conditions that got exacerbated and they want a "diverse pool" of participants.

There is a website: https://trials.recovercovid.org/

But they don't list the participating locations. There are sites across the country. You can search for clinical trials on the NIH website: https://clinicaltrials.gov/

If you're near a research institution, it may be more direct to go to the medical center's website and see what trials they're doing and if any are for Long COVID. I got recruited through the academic medical center where I'm a patient.

That site is helpful and there are definitely some in my area but I don't see where I can join. Do I have to be recruited through a doctor or do I contact the people conducting the study?

I think it depends on the site. In my case, I actually was recruited—my doctor passed my name onto a study coordinator and said I might be a fit.

But when I was looking into it, the hospital system has a webpage that lists all their clinical trials, description and contact information for how to get in touch if interested.

If you see some in your area, maybe you can find a similar clinical trial page on the website for the site that’s doing the research.