Jennifer Caldwell was an active and energetic woman who worked two jobs and took care of her daughter and parents, until she developed a bacterial infection that left her feeling extremely lightheaded, fatigued, and depressed. I have experienced memory loss.
That was nearly 10 years ago, and ever since then, she has been battling a condition known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Caldwell, 56, of Hillsboro, North Carolina, skis, dances, and holds two jobs as a clinical research coordinator and a food service worker, but she still has to stay in bed most days. She said it became.
“Since then, I’ve been sick and I haven’t worked a day since,” Caldwell said. Her symptoms included severe dizziness whenever her legs were not elevated.
The condition has left her “cognitively confused,” she says. “I can’t read or understand anything at all, and I can’t remember anything new. I feel like I’m kind of lost. That’s how I describe being at a loss.” .”
Seven years ago, the National Institutes of Health began a study of ME/CFS patients, and Caldwell was one of 17 participants who underwent a series of blood, body, and brain tests and evaluations.
Investigation result the studyThe findings, published Wednesday in the journal Nature Communications, show significant physiological differences in the immune system, cardiopulmonary function, gut microbiome, and brain activity of ME/CFS patients compared to a group of 21 healthy study participants. showed that.
Medical experts said the study, while a snapshot of a small number of patients, is valuable, in part because ME/CFS has long been ignored or misdiagnosed. Dr. Avindra Nath, director of neurological infections at the National Institute of Neurological Disorders and Stroke, who led the study, said the findings show that “this is biological, not psychological.” This confirms that.”
This finding could have implications for long-term patients with COVID-19, which often has symptoms similar or identical to those of ME/CFS. Although study participants were recruited before the pandemic, all had a form of ME/CFS that precedes an infectious disease, similar to how coronavirus infections precede the COVID-19 pandemic. was.
“Everything we’ve learned from ME/CFS will benefit long-term COVID-19 patients, and everything we’ve learned from long-term COVID-19 will benefit ME/CFS patients.” The infections experienced by patients in the study varied, Dr. Nass said. (None of them had Lyme disease; Mr. Caldwell’s infection was C. diff.)
Differences in the immune system are one of the most obvious findings, said Dr. Anthony Comaroff, a professor at Harvard Medical School. Although he was not involved in the research, he served as a reviewer for the journal’s study. “They discovered that the immune system becomes chronically activated, as if the immune system were engaged in a long war with foreign microbes, a war that could never be completely won. “So we had to keep fighting,” he said.
Dr. Nass said that in both long-term COVID-19 infections and post-infectious ME/CFS, either “a fragment of the pathogen attaches and is driving it,” or “the pathogen disappears, but we don’t know what it is.” Either he did it or not,” he said. My immune system never stabilized again. ”
Another distinctive finding was that when participants were asked to perform a task that measured grip strength, parts of the brain involved in coordinating and directing behavior showed reduced activation; In healthy people, activation increased.
That brain region, the right temporoparietal junction, “tells you to move your legs, it tells you to open your mouth and eat, so it’s like a command to do something,” Dr. Komarov said. said. “If you don’t light it properly, it’s harder to get your body to make that effort,” he continues, adding that the NIH researchers “found that chronic immune stimulation and changes in the gut microbiome are the culprit.” I guess so,” he added. These brain changes can cause symptoms. ”
Experts cautioned that the results of this small study may not reflect the experience of many ME/CFS patients.
This symptom can develop even in people who have not had the infection. And while ME/CFS is often characterized by severe energy depletion after physical or cognitive exertion (a phenomenon called post-exertional malaise), the study participants spent several days at the NIH in Maryland. They needed to be functional enough to undergo intensive evaluation during the visit.
“They selected fairly healthy patients,” says Dr. Carmen Scheibenbogen, a professor of immunology at the Institute of Medical Immunology at the Charité Hospital in Berlin, who was not involved in the study. “I think there are a lot of interesting findings, but it’s unfortunate because it’s a very mainstream approach and we selected patients that aren’t very representative.”
Beth Pollack, a research scientist at the Massachusetts Institute of Technology, said four of the 17 patients “spontaneously recovered” from their symptoms several years after participating, which is “not typical of ME/CFS.” Stated.
She and Dr. Scheibenbogen also noted that the study did not find medical signs of the symptoms that have been documented in other studies. For example, we did not find that patients performed worse on cognitive tests or had neuroinflammation.
“These are well-established pathologies and are really central to ME/CFS,” Ms. Pollack said, adding, “So this does not address everything, but just how many things we know about. It contradicts that,” he added.
Dr. Scheibenbogen said the most important finding was that the condition was caused by a dysregulation of the immune system, and researchers were clear that it was a physiological condition “rather than a psychosomatic disorder.” said that he said.
Experts said the study is the first in-depth look at ME/CFS by the NIH and should be considered just one step in understanding symptoms, severity and potential treatments. “We must move the field forward toward research into treatments,” Ms. Pollack said.
For Ms. Caldwell, some aspects of her experience as a research participant included a score of 15 on a 100-point scale for physical function and a score of 6.25 on a 100-point “vitality” scale that measures energy levels and fatigue. There was also a solemn aspect to it, like when we won the . And a feeling of happiness.
Her main hope for this study, she said, is that it will make doctors and others aware of ME/CFS and take it seriously.
“This research is important because we are at a stage where we are trying to gain understanding,” she said. “I’ve been gassed, fired, invalidated and disrespected for so long, so this vindication means a lot to me,” she added.
audio creator Patricia Zurbaran.
