Jennifer Caldwell was active and energetic, working two jobs and caring for her daughter and parents, when she developed a bacterial infection followed by severe dizziness, fatigue and memory problems.
That was almost a decade ago, and since then she has been battling the condition known as myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS. Ms Caldwell, 56, of Hillsborough, NC, said she went from being able to ski, dance and work two jobs as a clinical research coordinator and caterer to having to stay in bed most times every day.
“I haven’t been right since and I haven’t worked a day since,” said Ms Caldwell, whose symptoms include severe dizziness whenever her legs are not elevated.
The condition has also “messed me up cognitively,” he said. “I can’t read something and understand it very well, I can’t remember new things. It’s like being in a state of emptiness. That’s how I describe it, lost in the void.”
Seven years ago, the National Institutes of Health began a study of ME/CFS patients, and Ms. Caldwell became one of 17 participants who underwent a series of tests and assessments of their blood, body and brain.
Findings from the study, published Wednesday in the journal Nature Communications, showed marked physiological differences in the immune system, cardiorespiratory function, gut microbiome and brain activity of ME/CFS patients compared to a group of 21 healthy participants. in the study. .
Medical experts said that although the study was a snapshot of a small number of patients, it was valuable, in part because ME/CFS has long been dismissed or misdiagnosed. The findings confirm that “it’s biological, not psychological,” said Dr. Avindra Nath, chief of nervous system infections at the National Institute of Neurological Disorders and Stroke, who led the study.
The findings may have implications for patients with prolonged Covid, which often includes symptoms similar or identical to those of ME/CFS. Although the study participants were recruited before the pandemic, all had a type of ME/CFS that was preceded by an infection, just as long as it precedes a coronavirus infection.
“Whatever we learn from ME/CFS will benefit long-term Covid patients, and whatever we learn from long-term Covid will benefit ME/CFS patients, I think,” said Dr Nath, who said the infections experienced by patients in the study varied. (Neither had Lyme disease; Ms. Caldwell’s infection was C. diff.)
The differences in the immune system were among the clearest findings, said Dr. Anthony Komaroff, a professor of medicine at Harvard Medical School, who was not involved in the research but served as a reviewer of the study for the journal. “They found chronic activation of the immune system, as if the immune system was engaged in a long war against a foreign microbe, a war that it could not completely win and therefore had to keep fighting,” he said.
Dr Nath said his theory is that, in both long-term Covid and post-infectious ME/CFS, “you either have bits of that pathogen sticking around and driving this thing” or “the pathogen is gone, but whatever and if the immune system did, it just never calmed down again.”
Another striking finding was that when the participants were asked to perform tasks measuring their grip strength, a part of their brains involved in coordinating and directing actions showed reduced activation – whereas, in healthy people, it showed increased activation.
That area of the brain, the right temporal-parietal junction, is involved in “telling the legs to move, the mouth to open and eat — it kind of says do something,” Dr. Komaroff said. “When it doesn’t turn on properly, it’s harder to get the body to make that effort,” he continued, adding that the NIH researchers “hypothesize that the chronic immune stimulation they found and the changes in the gut microbiome they found could lead to these brain changes, which then lead to symptoms.”
Experts cautioned that the results of the small study may not reflect the experience of many people who have ME/CFS.
The condition can also develop in uninfected people. And while ME/CFS is often characterized by severe energy depletion after physical or cognitive exertion (a phenomenon called post-exercise malaise), study participants had to be functional enough to undergo intensive evaluation during days of visits to the NIH in Maryland.
“They chose rather healthy patients,” said Dr. Carmen Seibenbogen, a professor of immunology at the Institute of Medical Immunology at Charité Hospital in Berlin, who was not involved in the study. “I think there are a lot of interesting findings, it’s just disappointing because this was such an important approach and they chose patients who are not very representative.”
Beth Pollack, a researcher at the Massachusetts Institute of Technology, noted that, in the years following participation, four of the 17 patients “spontaneously recovered” from the condition, which she said is “not typical of ME/CFS.”
Both she and Dr. Scheibenbogen also pointed out that the study did not find some medical signatures of the condition that have been documented by other research. For example, it did not find that patients performed worse on cognitive tests or had neuroinflammation.
“These are well-established pathologies and they’re really central to ME/CFS,” Ms Pollack said, adding “so this wasn’t addressing everything and it went against some things we know.”
Dr. Scheibenbogen said the most important findings are that the condition is due to a dysregulation of the immune system and that the researchers are clearly stating that it is a physiological condition, “not a psychosomatic illness.”
Experts said the study, which is the NIH’s first detailed look at ME/CFS, should be considered just one step in understanding the condition, its severity and possible treatments. “We need to move the field toward cure research,” Ms. Pollack said.
For Ms. Caldwell, some aspects of the experience as a study participant were disappointing, such as when she scored 15 on a 100-point scale for physical functioning and 6.25 on a 100-point scale for “vitality” that measures energy level, fatigue and feelings of well-being. .
Her main hope for the study, she said, is that it will encourage doctors and others to recognize ME/CFS and take it seriously.
“We’re kind of at the point where we’re trying to be understood, so this study is a big deal,” he said. “For so long I’ve been trolled, fired, canceled, belittled,” he added, “so the validation is huge for me.”
The sound is produced by Patricia Sulbaran.
