A long-planned exercise trial for Covid-19 is being criticized by some of the patients the government-funded researchers want to study.

It is part of the trial RECOVER initiative to research on COVIDFunded by the government 1.15 billion dollars in four years. It aims to study long-term covid, helping millions of people with long-term symptoms, including extreme fatigue, brain fog and shortness of breath, find treatment.

The study is it. root One of the five test platforms National Institutes of Health And Duke Clinical Research Institute Plan to start in summer and fall. Each trial platform will study different long-term symptoms of Covid and test different interventions.

The protocol for the exercise study is not complete, but it will test physical therapy at different levels of intensity, Tailored to the patient’s abilities, and purpose. There is an improvement in endurance Adrian HernandezExecutive Director of the Duke Clinical Research Institute.

He called early research on physical therapy “promising” but declined to cite specific studies. He estimated that an exercise-based intervention could help about half of all long-term Covid patients.

Some long-time covid advocates, however, say any attempt at exercise can be dangerous for patients with long-term covid myelgic encephalomyelitis (ME/CFS), also known as chronic fatigue syndrome.

Exercise and its effects on people with ME/CFS

Studies show People with ME/CFS Don’t have the same reaction Exercise is similar to healthy individuals and many ME/CFS patients report worsening of the disease after minimal activity. This breakdown is called post-exercise syndrome.

Some ME/CFS sufferers report that, over time, constantly going over the limit has made them permanently worse. It’s not exactly clear how long covid patients have ME/CFS, but some researchers speculate that About half Developing ME/CFS.

Advocates are now concerned that ME/CFS long-term covid sufferers may be similarly harmed if they participate in any exercise study.

Long covid justice, patient advocacy group launched a Petition Late last year, the NIH called for the trial to be halted. #MEActionA nonprofit advocacy group for people with disease-related chronic pain has also been deployed. two LettersIn February and March, He calls on the RECOVER committee to stop the trial.

If the trial begins, #MEAction has called for any patient with ME/CFS or post-exercise disorder to be excluded, stating that exercise does not benefit this population.

“The worst case scenario is that this is going to affect a lot of people,” said #MEAction’s US advocacy director Ben Hsu citizen.

Hernandez said that researchers plan to educate participants about the health problems that occur after exercise and to carefully check the situation before continuing. The study is voluntary, so participants can refuse to participate or withdraw. An independent committee reviewed the study for safety, and institutional review boards ensured that the study was safe and ethical.

There are more than 200 symptoms associated with chronic Covid, and some symptoms, such as exercise intolerance, can have different underlying causes, Hernandez said. With such a wide range of symptoms, it’s difficult to find a single intervention that works for everyone, he says.

ME/CFS has a complicated research history

JD Davids, founder and co-director of Long-Covid Justice, said the NIH’s Long-Covid Fitness Trials fear the scientific community will continue its history of mishandling ME/CFS research.

Davids, who has a long history of covid and ME/CFS, feels that many sufferers like him are silenced or ignored by researchers. “I appreciate the involvement with me of people who understand the stakes here, who are doing everything they can to make sure that history doesn’t repeat itself,” he said.

Historically, Some patients say there are doctors Not easy ME/CFS or It is forbidden It is assumed that this is a real situation and that patients are worried.

Research into the condition has also been scant: a 1999 audit found that the Centers for Disease Control and Prevention spent most of its funding for ME/CFS research on other diseases, and one Research Given the disease burden, ME/CFS is recognized as one of the most underfunded diseases for research by the NIH.

Larger studies involving ME/CFS are one subject of controversy. of Research Cognitive behavioral therapy and graded exercise therapy (which involves increasing activity over time) may be beneficial for ME/CFS patients, published in The Lancet.

But the study has been Broadly speaking They criticized. Midtrial without clear reason and using wrong data collection methods to change results. Although the lead author of the Lancet report stood by the results of their study, concerns about the safety of graded exercise therapy prompted the CDC to remove it as a recommended treatment for ME/CFS.

On the contrary, another Research They found that most ME/CFS patients had worse symptoms after exercise.

Some long-term covid sufferers have been told they have ME/CFS and should avoid excessive exercise.

A large number of chronic Covid patients have developed an autonomic nervous system disorder called POTS or postural orthostatic tachycardia syndrome. Physical therapy is done regularly Recommended As a standard intervention to help manage POTS, it is now being recommended for some chronic covid patients with POTS.

David SystromAn assistant professor of medicine at Harvard Medical School believes there is significant overlap between POTS, ME/CFS and chronic Covid. Systrom is the co-chair of the RECOVER Task Force, which looks at the commonalities between long-term covid and other post-viral diseases. It’s unclear how long Covid patients have ME/CFS, POTS or both conditions, he said.

In an independent study, he and other researchers found that people with POTS; ME/CFS And Long covid All of them experience circulatory disorders. He believes that issues with the autonomic nervous system, which controls involuntary functions such as heart rate, blood pressure, and digestion, contribute to all three conditions.

He said exercise training helps train blood vessels to behave normally. But he cautioned that some preliminary research suggests that exercise may make things worse in patients with ME/CFS.

Systrom treats his long-term Covid patients with medication to improve autonomic nervous system function or reduce inflammation before prescribing any type of exercise.

“We’ve found that if patients are properly medicated and feel well, they can slowly and carefully progress their exercise programs without causing an emergency,” he said. “This difference is very important.”

other ResearchIn the Journal of Applied Physiology, individualized exercise training under the supervision of a medical professional has helped reduce long-term Covid symptoms and improve overall health for most patients. The researchers cautioned, however, that the benefits may not be generalizable and that other factors, such as vaccinations and diet, may affect the findings.

Matt DurstenfeldCardiologist and Assistant Professor at the San Francisco School of Medicine in California, He did Research It shows that people with prolonged covid are unable to increase their heart rate properly during exercise.

“We don’t know what the role of exercise is,” Durstenfeld said. “That’s why, scientifically, it’s so important that we study it rigorously, especially when there are opposing views in society, where some people believe that exercise is very harmful and others think that exercise is the key to recovery.”

However, exercise is unlikely to cure long-term Covid, and it’s debatable how much funding should be directed to studying exercise and its cure, says RECOVER, who collects data and is partially remunerated by NIH funds for UCSF.

Prioritize exercise over other possible treatments

Charlie Macon, 33, of San Francisco, a RECOVER patient representative, said some of the criticisms of the NIH exercise trial are priorities.

Macon said. In the year In March 2020, he developed POTS and post-exercise disorder following a coronavirus infection. This worsened after his second seizure in September 2021. Physical therapy is one of the few treatments offered to patients with COVID-19 and is not widely available. It is not useful for many.

Last fall, a day of strength-training workouts at a long-running Covid clinic left him unable to get out of bed for four weeks, McCone said. Now he’s looking forward to better treatment options and believes the NIH exercise trial won’t significantly change the landscape of current treatments.

McConnell argued that because funding to study long-term Covid is limited and the NIH plans to conduct only five trial platforms, researchers should prioritize studying potential cures or promising drug interventions.

“How long are we going to suffer and have to watch this horrible process unfold?” he asked. “When we prioritize these kinds of challenges and are told help is on the way, we just don’t feel that way.”

Hernandez, the trial’s executive director, said medical professionals shouldn’t prescribe exercise simply because it’s convenient, arguing that there needs to be more evidence for this practice.

If exercise proves helpful, having evidence from a large scientific trial like this would help ensure the intervention is widely available and covered by insurance, he said. And, if exercise isn’t beneficial, he believes patients have a right to know.

He said he understood that people were impatient to be saved, but warned that scientific research was often a slow process and that studies were not always conclusive.

“We all have to be prepared for how long Covid is and if the science is hard, it will take time to get the best answers,” he said.

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