MEAction questions Long COVID exercise study's safety, efficacy

The National Institutes of Health RECOVER Initiative is moving forward with a clinical trial of exercise therapy for people with Long COVID.

Read Our Letter to RECOVER

#MEAction has serious concerns about the safety and efficacy of this study and has sent a letter calling on RECOVER to immediately release the study protocol for public review and outlining key concerns that must be addressed before the study is allowed to proceed.

We’re appalled that RECOVER is wasting precious research dollars on a trial that is potentially harmful for the majority of people with Long COVID, instead of focusing on clinical trials and treatments that could make a real difference for both the Long COVID and ME communities. 

We know exercise interventions can worsen symptoms and cause harm to those with ME/CFS and anyone who experiences post-exertional malaise (PEM). This is especially concerning given that up to half of those with Long COVID meet the diagnostic criteria for ME/CFS, and PEM is experienced by the majority of those with Long COVID.

A RECOVER exercise trial may well be history repeating itself: a second PACE trial whose flawed design creates the illusion that “exercise cures Long COVD”, leading to clinical guidelines that could harm millions. 

People with ME have a long history of being harmed by recommendations for exercise therapy. The largest trial used to justify these recommendations— known as the PACE trial—was scientifically and methodologically flawed and eventually debunked by the research community, but it caused years of damage to the ME/CFS community that we’re still working to undo. 

RECOVER has a duty not to harm those Long COVID patients who experience PEM by repeating these well-documented mistakes. It should exclude from this study all Long COVID patients for whom exertion causes a worsening of symptoms and function, which is the majority of the Long COVID community. 

But so far, RECOVER has released no concrete information about who this study will specifically include or exclude. There is no information on what the rationale would be for “treating” people with PEM with exercise therapy. 

That is why we sent this letter calling on RECOVER to immediately release the study protocol for public review and outlining key concerns that must be addressed before the study is allowed to proceed.

Read Our Letter to RECOVER

We have a right to demand full transparency and satisfactory answers about this alarming exercise study. Without this information, there is no basis for believing this trial will be safe and/or effective for people with Long COVID.

Please stay tuned for more updates from #MEAction on this critical issue. We know you care deeply about the harm the PACE trial has caused for people with ME and don’t want to see that happen to anyone else. We will be sharing ways you can join us in taking action in the near future.