the study teeth under 1 of 5 trial platforms National Institutes of Health and Duke Clinical Institute It will start in the summer/fall. Each trial platform will study different clusters of COVID-19 symptoms over time and test different interventions.
Exercise study protocol not yet finalized, but plans to test physiotherapy at different intensity levels, We aim to treat patients according to their abilities. said to improve endurance Adrian Hernandezexecutive director of the Duke Clinical Institute.
He called early research on physical therapy “promising,” but declined to name specific studies. He estimated that exercise-based interventions could help up to half of long-term coronavirus patients.
However, some long-term COVID-19 advocates believe that any exercise test is potentially dangerous for long-term COVID-19 patients with myalgic encephalomyelitis (ME/CFS), also known as chronic fatigue syndrome. Some argue that it may be
Exercise and its effects on ME/CFS patients
the study show People with ME/CFS not the same reaction Many ME/CFS patients report worsening symptoms with even modest activity. This depression is called post-exertional malaise.
Some people with ME/CFS say that over time they have continued to push their limits, resulting in a permanent worsening of their symptoms. The exact number of ME/CFS patients with long corona duration is unknown, but some researchers estimate that: about half Develop ME/CFS.
Proponents now fear that long-term COVID-19 ME/CFS patients could be similarly harmed if they participate in exercise studies.
Long COVID Justice, a patient advocacy group, said: petition Late last year, he called for the NIH trial to be stopped. #MEActionA non-profit advocacy group for people with chronic illnesses related to infectious diseases two letterin February and March, to the RECOVER committee seeking an end to the trial.
#MEAction asked to exclude patients with ME/CFS or post-exercise fatigue if the trial was initiated, arguing that exercise would not help this population.
The US advocacy director for #MEAction said, “In the worst-case scenario, we’re going to hurt a lot of people.” Ben Suboger.
Hernandez said the researchers will educate participants about post-exercise fatigue and carefully screen for symptoms before proceeding. The study is voluntary, so participants may decline to participate or drop out, he said. He said an independent panel has reviewed the study to ensure its safety, and an institutional review board will also ensure the study is safe and ethical.
Hernandez said there are more than 200 symptoms associated with long-term COVID-19, and some symptoms, such as exercise intolerance, may have different underlying causes. With such a wide range of symptoms, he said it’s hard to find one intervention that works for everyone.
Complex research history of ME/CFS
JD David, co-founder and co-director of Long COVID Justice, fears NIH’s lengthy COVID-19 practice trial will continue a long history of mishandling of ME/CFS research by the scientific community said it does.
A longtime COVID-19 and ME/CFS sufferer, Davids said many patients like him have felt shut out of conversations and ignored by researchers. “I appreciate the involvement of the people at ME who understand the risks here and are doing everything in their power to prevent that history from repeating itself,” he said.
Historically, Some patients say doctors dwarfed ME/CFS or rejected He ignored the patient as having anxiety, claiming it was a real condition.
Very little research has been done on this disease. A 1999 audit revealed that the Centers for Disease Control and Prevention had spent much of its funding on his ME/CFS research on other diseases. study Considering disease burden, ME/CFS was found to be one of the least funded diseases for research by NIH.
One of the largest studies on ME/CFS has been the subject of controversy.of study Researchers published in The Lancet found that cognitive-behavioral therapy and graded exercise therapy (a therapy that gradually increases activity over time) may be beneficial for people with ME/CFS.
But that study Wide criticized For changing outcome measures mid-trial without clear justification and using flawed data collection methods. The lead author of the Lancet report supports his findings, but concerns about the safety of graded exercise therapy have led the CDC to drop it from its recommended treatment for ME/CFS.
In contrast, another study Most ME/CFS patients were found to have worsening symptoms after a graded exercise regimen.
Some long-term COVID-19 patients have been told that they should avoid extreme exercise because they have ME/CFS.
However, many long-standing COVID-19 patients also develop an autonomic nervous system disorder called POTS (postural orthostatic tachycardia syndrome).Physiotherapy is routine Recommended As a standard intervention to help manage POTS, it is now recommended for some long-term coronavirus patients.
David SystromAn assistant professor at Harvard Medical School, he believes there is significant overlap between POTS, ME/CFS, and long-term COVID-19. Systrom co-chairs the Recovery Task Force, which explores commonalities between long-term COVID-19 and other post-viral syndromes. It’s unclear how many long-term Covid-19 patients have symptoms of ME/CFS, POTS, or both, he said.
In an independent study, he and others found that POTS patients myself/CFS and long coronavirus Everyone experiences blood flow abnormalities. He believes that problems with the autonomic nervous system, which regulates involuntary functions such as heart rate, blood pressure, and digestion, contribute to all three symptoms.
Exercise training can help retrain blood vessels to work more normally, he said. But he cautioned that some preliminary studies have shown that exercise may exacerbate inflammation in people with ME/CFS.
Systrom usually gives long-term COVID-19 patients medication to improve autonomic nervous system function and reduce inflammation before recommending any form of exercise.
“We’ve found that if patients get the right medication and feel better, they can go through an exercise program gradually and deliberately without suddenly crashing,” he said. “That distinction is very important.”
another studypublished in the Journal of Applied Physiology found that individualized exercise training under the supervision of a medical professional could reduce lingering COVID-19 symptoms and improve overall health in most patients. I found it helpful. However, the researchers cautioned that the benefits could not be generalized and that other factors, such as vaccines and nutrition, could have influenced the results.
Matt Durstenfelda cardiologist, and Assistant Professor, University of California, San Francisco School of Medicine, Hooray research This indicates that people with long-term COVID-19 are unable to adequately raise their heart rate during exercise.
“I don’t know what the role of exercise is,” says Durstenfeld. “That’s why it’s so important, scientifically, to study it in a rigorous way. Some people think exercise is extremely harmful, and some people think it’s the key to recovery, especially in the community.” It is even more so when there are conflicting opinions, such as
But exercise is unlikely to cure long-term COVID-19, and it’s debatable how much money should be devoted to exercise research and treatment research, according to RECOVER data collectors. and part of his salary comes from NIH funds that go to UCSF, said Durstenfeld.
Prioritize exercise over other treatments
Some of the criticism of the NIH exercise trial is about priorities, says RECOVER patient representative Charlie McCone, 33, of San Francisco.
Mr McCone said: He developed POTS and post-exertional malaise after a coronavirus infection in March 2020, which worsened after a second infection in September 2021. Physiotherapy is one of the few treatments offered to patients with long-term coronavirus infection, and while it is widely available, it is still inadequate. It’s useless for many people, he said.
McCone said he collapsed last fall after a day of strength training at a clinic during a long period of COVID-19 and was unable to get out of bed for four weeks. He now eagerly awaits better treatment options and does not believe the NIH exercise trial will significantly change the landscape of available treatments.
With limited funding to study long-term COVID-19, and only five clinical trial platforms under the NIH plan, researchers are free to explore potential therapeutics and promising pharmaceuticals, McCone said. He argued that intervention research should be prioritized.
“How long are we going to be ill and have to watch this painful process unfold?” he asked. “When we prioritize this kind of trial, and people say rescue is on the way, it really doesn’t feel like it.”
Hernandez, the trial’s executive director, said medical professionals shouldn’t prescribe exercise just because it’s convenient, and argued that more evidence was needed for the practice.
If exercise does work, evidence from large scientific trials like this one will ensure that the intervention is widely available and covered by insurance, he said. . And even if exercise doesn’t help in the end, he believes patients have a right to know.
He understands that people are waiting for a cure, but warned that scientific research is usually a slow process and research doesn’t always yield breakthrough results.
“Given the length of COVID-19 and the difficulty of science, everyone should be prepared that it will take time to get the best answers,” he said.
