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Patients with ME/CFS were carefully screened to ensure they don’t have other confounding health conditions and then matched to healthy volunteers. Both groups underwent extensive studies, including blood draws, brain imaging, muscle strength testing, heart- and lung-function assessments, and even spinal fluid analysis.
Three major findings stand out: First, the research provided clear evidence of physiological abnormalities in ME/CFS patients. Compared with the healthy control group, these individuals had immunologic disturbances, including higher levels of the B cells that are activated when the body encounters an infection. The ME/CFS patients also had spinal fluid with unusually low levels of substances called catecholamines, which help regulate the nervous system.
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The senior author of the study, Avindra Nath, told me in an interview that “we can pretty emphatically say that deconditioning and psychological factors cannot explain their symptoms.” This is huge for many ME/CFS sufferers who have been repeatedly dismissed by medical professionals and told there was nothing physically wrong with them.
Second, researchers found functional and not structural abnormalities. For instance, there were no masses or lesions in the brain, but there was a region called the temporoparietal junction that had lower activity compared with healthy controls. It’s possible that the decreased activity disrupts how the brain tells the body to exert effort, worsening fatigue.
This finding, too, is good news, because functional abnormalities are potentially treatable and might even be reversible. Indeed, there were a few participants in the study who spontaneously recovered.
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Third, investigators discovered significant differences between men and women. While this was not entirely surprising, as women are more likely than men to have ME/CFS and autoimmune diseases, the study found specific and marked differences between the two groups in immune cell populations and markers of inflammation.
For example, men had abnormal T cell activation, and women had abnormal B cell patterns. These findings can help inform future research, Nath said, because “what would work in women may not work in men.”
Overall, the results support the hypothesis that ME/CFS is due to persistent immune activation. Normally, when someone comes down with an infection, their immune system works overtime to get rid of the foreign agent and then calms down when the infection is gone. But in ME/CFS patients, pieces of the virus or bacteria may linger in the body and continue to stimulate the immune system long after the infection should have resolved.
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“More and more researchers have started using the term ‘post-infectious syndromes,’” Nath told me. “It’s quite possible that all these diseases are one and the same thing, but what initiates them may be different.” The inciting agent could be the coronavirus, the Epstein-Barr virus, Lyme’s disease or a whole host of other pathogens, but the subsequent illness ends up wreaking havoc in a similar way.
Nath and his colleagues decided to make every piece of their data publicly available so that scientists around the world can use the findings to jump-start their own research. Ongoing studies are attempting to pinpoint a biomarker — a finding on a blood test — so that post-infectious syndromes can be more easily diagnosed. Crucially, Nath and others have started clinical trials to test therapeutics that target specific parts of the immune system.
“These patients are very desperate, and we should give them hope,” Nath said. He wants to assure people with post-infectious syndromes that there are researchers dedicated to studying their illness and that everyone is extremely motivated. “The answers may take some time, but we will find them,” he said.
I hope he is right and that this NIH study will be the catalyst for many more. The millions of Americans newly living with long covid urgently need treatments, as do all the people who have ME/CFS, for whom medical attention and scientific resources have been long overdue.
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Long before the coronavirus pandemic brought about persistent symptoms known as long covid, an eerily similar condition was disabling thousands of Americans. Previously healthy individuals would go from living normal and active lives to being so fatigued that they could hardly get out of bed. Many had a preceding viral or bacterial infection.
The condition is called myalgic encephalitis/chronic fatigue syndrome (ME/CFS). Though more than 1 in 100 American adults suffer from it, little is known about the disease. It’s common for patients to go through years of misdiagnosis. There are no approved treatments.
A new landmark study from the National Institutes of Health sheds important light on ME/CFS and offers hope for the millions of people living with this disease and the closely related condition of long covid.
This study is notable in that it is the most in-depth and multidisciplinary study of ME/CFS to date, involving more than 75 investigators across 15 NIH institutes and taking nearly eight years to complete. The manuscript, published in Nature Communications, is 29 pages long, with more than 60 pages of supplemental information.
Patients with ME/CFS were carefully screened to ensure they don’t have other confounding health conditions and then matched to healthy volunteers. Both groups underwent extensive studies, including blood draws, brain imaging, muscle strength testing, heart- and lung-function assessments, and even spinal fluid analysis.
Three major findings stand out: First, the research provided clear evidence of physiological abnormalities in ME/CFS patients. Compared with the healthy control group, these individuals had immunologic disturbances, including higher levels of the B cells that are activated when the body encounters an infection. The ME/CFS patients also had spinal fluid with unusually low levels of substances called catecholamines, which help regulate the nervous system.
The senior author of the study, Avindra Nath, told me in an interview that “we can pretty emphatically say that deconditioning and psychological factors cannot explain their symptoms.” This is huge for many ME/CFS sufferers who have been repeatedly dismissed by medical professionals and told there was nothing physically wrong with them.
Second, researchers found functional and not structural abnormalities. For instance, there were no masses or lesions in the brain, but there was a region called the temporoparietal junction that had lower activity compared with healthy controls. It’s possible that the decreased activity disrupts how the brain tells the body to exert effort, worsening fatigue.
This finding, too, is good news, because functional abnormalities are potentially treatable and might even be reversible. Indeed, there were a few participants in the study who spontaneously recovered.
Third, investigators discovered significant differences between men and women. While this was not entirely surprising, as women are more likely than men to have ME/CFS and autoimmune diseases, the study found specific and marked differences between the two groups in immune cell populations and markers of inflammation.
For example, men had abnormal T cell activation, and women had abnormal B cell patterns. These findings can help inform future research, Nath said, because “what would work in women may not work in men.”
Overall, the results support the hypothesis that ME/CFS is due to persistent immune activation. Normally, when someone comes down with an infection, their immune system works overtime to get rid of the foreign agent and then calms down when the infection is gone. But in ME/CFS patients, pieces of the virus or bacteria may linger in the body and continue to stimulate the immune system long after the infection should have resolved.
“More and more researchers have started using the term ‘post-infectious syndromes,’” Nath told me. “It’s quite possible that all these diseases are one and the same thing, but what initiates them may be different.” The inciting agent could be the coronavirus, the Epstein-Barr virus, Lyme’s disease or a whole host of other pathogens, but the subsequent illness ends up wreaking havoc in a similar way.
Nath and his colleagues decided to make every piece of their data publicly available so that scientists around the world can use the findings to jump-start their own research. Ongoing studies are attempting to pinpoint a biomarker — a finding on a blood test — so that post-infectious syndromes can be more easily diagnosed. Crucially, Nath and others have started clinical trials to test therapeutics that target specific parts of the immune system.
“These patients are very desperate, and we should give them hope,” Nath said. He wants to assure people with post-infectious syndromes that there are researchers dedicated to studying their illness and that everyone is extremely motivated. “The answers may take some time, but we will find them,” he said.
I hope he is right and that this NIH study will be the catalyst for many more. The millions of Americans newly living with long covid urgently need treatments, as do all the people who have ME/CFS, for whom medical attention and scientific resources have been long overdue.
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