Researchers will measure oxygen uptake and heart rate in people with long-term COVID to assess how they respond to exercise.Credit: University of the Pacific
Patients and patient advocates are calling on the US National Institutes of Health (NIH) to reconsider its decision to include exercise testing in its RECOVER initiative aimed at researching and finding long-term COVID cures. increase. They claim that the majority of people with long-term COVID have reported experiencing post-exercise malaise (PEM). You can harm them through exercise testing.and petition and many letteradvocates demand that the NIH and associated physicians explain the rationale for this test and share the testing protocol.
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Up to 23 million people in the United States have long-term COVID-19, According to a report by the U.S. Government Accountability OfficeThe condition affects their lives and livelihoods. Analysis of people with long COVID Of those who filed worker’s compensation claims in New York state between January 1, 2020 and March 31, 2022, 18% were out of work for a year or more after contracting coronavirus SARS-CoV-2. I discovered that it has not returned. Proponents would like to see a RECOVER exercise protocol because they are concerned that study participants are not adequately informed about potential risks. Participants not being adequately screened for PEM. Also, researchers don’t adequately monitor people for harm after exercise therapy or for hours after the trial ends.
“In a world with hundreds of things to try, why would you choose this one thing that you know could harm the majority of your patients?” Washington, DC-based research and We ask Lisa McCorkell, co-founder of the advocacy group Patient-Driven Research Coalition Against COVID-19.
The RECOVER Clinical Trials Data Coordination Center at Duke Clinical Research Institute in Durham, NC, Nature A statement on behalf of the NIH said the trials planned for RECOVER (which stands for Researching COVID to Enhance Recovery) have not yet begun and the agency is working with patient representatives to develop an exercise testing protocol. The statement also states that research investigators have met with these representatives to discuss the concerns expressed in the letters and petitions.NIH will not make the representatives available. I did. Nature In an interview leading up to the publication of this article, he said the full protocol for the trial will only be published after it has been reviewed by the Institutional Review Board.
hit the wall
Long COVID isn’t the first illness people have reported experiencing PEM. People with myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), have long reported that their symptoms worsen after excessive exercise, making everyday life difficult. Like the long COVID, ME/CFS often develops after viral illness. Its symptoms include PEM, cognitive impairment, joint pain, and muscle pain.
Jaime Seltzer, who has ME/CFS, experiences post-exercise fatigue that worsens with even light exercise.Credit: Gabrielle Lurie/San Francisco Chronicle via Getty
Jaime Seltzer, who has ME/CFS, first experienced PEM after doing light exercise. “I was feeling fine until I hit a wall, but then I experienced a core temperature drop, started shivering and had a hard time thinking,” said science and medical outreach for international advocacy group #MEAction USA. says Seltzer, director of Santa Monica, CA, letter to NIH. “Suddenly it felt like being thrown at the North Pole.”
It seems counterintuitive that exercise, usually thought of as a component of health, can be harmful, but researchers have confirmed some of the physical effects of PEM through controlled studies. Scientists measured heart rate and oxygen uptake during two maximal exercise tests 24 hours apart.They found that people with PEM performed significantly worse on day two1On the other hand, results for people without PEM, a group that includes athletes, sedentary people, and people with conditions such as heart failure and cystic fibrosis, were similar, if not identical, on both days. Studies have also shown abnormal patterns of gene expression2,metabolism3 and cognitive functionFour Post-exertion in a PEM patient.
exercise overload
As researchers discover more about long-term COVID, it becomes clear that many people with this condition meet criteria for ME/CFS.In a study published online late last year,Fiveresearchers reported that of the 465 people with long COVID studied, 58% could be classified as having ME/CFS.
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And in a 2021 study, researchers from a patient-led research consortium that included McCorkell surveyed 3,762 COVID patients and found that PEM was one of the most frequently reported symptoms over a seven-month period. I was.6Approximately 89% of participants reported experiencing PEM at some point during the course of their illness, and 72% still reported PEM at 7 months.
For all of this, there are advocates for including exercise testing in the RECOVER initiative. RECOVER is the largest long-term COVID study to date, according to the NIH, and the trial will last four years and is expected to enroll more than 15,000 adults and her 6,000 children.
Statement from NIH Nature The exercise trial “uses inclusion and exclusion criteria to ensure that people who could be harmed by exercise are not included in trials on its platform,” he said. still worry that clinical trials are a waste of time and money.
JD Davids, co-founder of the New York City-based advocacy group Long Covid Justice and author of the petition that began circulating in December and now has more than 1,600 signatures, said when seeking treatment. says, “Each dollar is precious.” signature.
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“It is clear that the NIH RECOVER initiative is made up of many people who are dedicated and determined to pioneer effective long-term COVID treatments,” said the San Francisco-based advocate. Charles McCone says. Nature Identified as patient representative for the RECOVER trial.But the inclusion of exercise in the initiative is “confusing and discouraging,” he says, a largely ineffective and often harmful treatment for people with ME/CFS. [for long COVID] It has been identified as a promising candidate for immediate further research,” but funding is limited, he added. McCone was unable to discuss the exercise trial protocol. Nature Because he signed a confidentiality agreement with the NIH.
US Congress has allocated $1.15 billion to support RECOVER for four years. NIH refused to disclose Nature How much of that money will be used to fund exercise trials.
