Even as the latest COVID surge recedes, doctors and patient advocates warn that the virus could leave a new epidemic in its wake: millions more cases of the rare, mysterious condition known as chronic fatigue syndrome.
Researchers increasingly see parallels between chronic fatigue syndrome, which affects 1.5 million Americans, and long COVID, the barrage of symptoms including exhaustion, persistent pain and cognitive impairment that can linger for months in some patients.
The connection between the two disorders is still being studied, but some research suggests the pandemic could more than triple the prevalence of chronic fatigue syndrome, also known as myalgic encephalomyelitis, or ME.
“When we saw COVID happening, people in the ME community were some of the first to raise alarm bells that this was going to be a mass disabling event,” said Robert Sklans of Metuchen, a board member with the advocacy group #MEAction Network. “We were looking at the symptoms of long COVID and saying there are going to be a boatload of people with ME/CFS."
While research into COVID's long-term impact is still in its infancy, there's evidence that one in 10 infections may develop symptoms of chronic fatigue. That would equate to about 7.7 million cases in the U.S.
That horrifies those familiar with ME/CFS, a complex, often debilitating disease that leaves some sufferers permanently homebound. Yet it has also raised hopes of more awareness and research funding for a disorder that patients feel hasn't gotten enough attention.
James Strazza, a former Morris County man who's been confined to his home for two years by the condition, said the public needs to know "how little the government and medical industry cares for people with ME and chronic illness in general."
"Our funding is at the very bottom of the list for the NIH," he said.
The medical community sees commonality between the two diseases, which cause long-term pain, brain fog and extreme fatigue, and which both develop from infections.
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"There are estimates that anywhere from 10 to 30% of people who get a bad infection of COVID-19 — not hospitalized, but a pretty decent infection — can go on to develop long COVID," said Brayden Yellman of the Salt Lake City-based Bateman Horne Center, one of the country's leading treatment centers for myalgic encephalomyelitis. "This will definitely increase the numbers of people with ME/CFS exponentially."
Patients and advocates are pushing the federal government to incorporate research on ME/CFS into the RECOVER initiative, a $1.15 billion study of long COVID launched by the National Institutes of Health in October.
Lobbying for more research
The initiative should be “prioritizing ME/CFS researchers and building off the research that already exists," Laurie Jones, managing director at #MEAction, said in a letter to Congress. The group asked lawmakers to “hold the NIH accountable" and to "initiate long COVID clinical treatment trials immediately."
Advocates want to accelerate understanding of post-viral illnesses in the hope of delivering treatments more quickly to both the long COVID and ME/CFS communities.
#MEAction isn’t alone in this thinking. Groups such as the Patient-Led Research Collaborative, which focuses on long COVID, and Body Politic, a COVID-19 support group, have written to the NIH lamenting the historical lack of research into chronic fatigue.
The RECOVER study is expected to take four years to complete, said Walter Koroshetz, director of the NIH's National Institute of Neurological Disorders and Stroke, which is heading up the project.
It would be a long wait for Lauren Nichols, 34, Body Politic's vice president.
Until a bout with COVID two years ago, Nichols said, she was "super healthy" and "very athletic," regularly walking 6 miles a day. But the Boston resident was hit hard in the pandemic's first wave and still hasn't recovered.
“My former doctor said, 'You are 32 years old; even if you get COVID you will be fine,' " she said. But the infection felt like "a combination of mononucleosis, dysentery and pneumonia."
Nichols was told to go home and managed her own care in a “tiny one-bedroom apartment.” After four weeks in bed, she was getting worse, not better.
“It felt like my bed was my death bed," she said. "I had severe gastrointestinal issues that lasted for four months straight. I had 46 bouts of diarrhea and blood coming out of my body. I couldn’t hold water down and lost a significant amount of weight. I don’t know how I survived. It was incredibly traumatic.”
Nichols developed pneumonia and numbness in her left foot, and her blood “felt fizzy.” Then came seizures and “significant” brain fog.
“It felt like dementia. One day I was trapped in my shower because I didn’t know how to use the door handle. I remember sitting on the shower floor crying because I didn’t know how to get out," she said.
More than 23 months later, she is still suffering.
Connecting COVID, chronic fatigue
As the pandemic progressed, doctors who specialize in treating ME/CFS recognized symptoms in people with long COVID. Like their own patients, COVID "long haulers" had problems in multiple areas such as the lungs, heart and brain.
At the Bateman Center in Utah, the chronic fatigue specialists “enrolled a bunch of long COVID patients to learn about them and try to treat them like they have ME/CFS, and we have had great success in improving their symptoms,” Yellman said. “They meet all the clinical criteria we have for ME/CFS. At the end of the day, it is absolutely the same illness.”
Still, there are differences, said the NIH's Koroshetz. COVID cases are “much more homogeneous.” They're also more traceable: Researchers can study a case from inception, whereas ME/CFS is often diagnosed well after the fact. Medications such as remdesivir, meanwhile, have proved effective treating COVID, while ME/CFS treatments only manage symptoms. Rehabilitation options can also vary between the two.
Given the discrepancies, Koroshetz said, the RECOVER study has been designed for coronavirus patients alone.
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The best way to approach it is to “figure out what is happening with COVID and then see what’s happening with ME/CFS,” he said.
Even so, he said he is listening to the ME/CFS community, and its members have had input in designing the research initiative.
"Doctors who take care of ME/CFS were included right from the beginning in helping us design procedures for the RECOVERY program, and we are building a steering committee of people who are affected by persistent symptoms of COVID and others," Koroshetz said.
As far as the study's four-year timeline, he said he knows researchers have to move "as quick as we can." Advancements will see the light of day as soon as they are made, Koroshetz said.
"The idea is to follow every clue as it comes up," he said, adding that he's also "committed to continue to work on ME/CFS."
"People with ME/CFS have a terrible time trying to find doctors to care for them," Koroshetz said. But the coronavirus pandemic means "doctors will have to become skilled in taking care of persistent problems. ... The silver lining is it may increase good care for people with ME/CFS, whether from COVID or not."
Gene Myers covers disability and mental health for NorthJersey.com and the USA TODAY Network. For unlimited access to the most important news from your local community, please subscribe or activate your digital account today.
This article originally appeared on NorthJersey.com: COVID may launch chronic fatigue syndrome epidemic, doctors warn