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NIH to Open Clinical Trials for Long COVID Post Exertional Malaise
Post-COVID Recovery & COVID-19 | Last Active: Sep 12 2:30pm | Replies (14)Comment receiving replies
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/
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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.