Long Covid Doubles Burden of Mystery Illness Few Doctors Treat

Doctors estimate there were 1 million to 2 million people living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) before the coronavirus pandemic hit. With the advent of long Covid, there may be twice that many now.

ME/CFS may well explain the symptoms described by many people who are still ill months after having Covid-19. The condition, which can leave its victims bedridden, can be triggered by or follow an infectious disease.

But most doctors don’t know what ME/CFS is, in part, because routine lab tests show nothing wrong. Some doctors don’t believe patients, and even if physicians spot it, the condition is often misdiagnosed. There’s no specific diagnostic code for ME/CFS like there is now for long Covid.

Patients, as a result, often struggle to get insurance coverage for tests and treatments and have a hard time claiming disability benefits if they can’t work, even as they battle the hallmark symptoms of severe fatigue, confusion, memory issues, and dizziness or fainting while standing or sitting. Doctors and federal officials say there just aren’t enough physicians who know how to diagnose or treat it.

“There’s still a lot of health-care providers that don’t understand ME/CFS and patients face a lot of stigma because the illness is very much biologic, very much real, but most of the routine lab tests are normal,” said Elizabeth Unger, chief of the Chronic Viral Diseases Branch at the Centers for Disease Control and Prevention (CDC).

“This is profound fatigue that is not relieved by rest, that prevents you from doing activities of normal daily living, that is really very debilitating,” Unger said.

‘Good Luck’

With so few doctors who understand ME/CFS, patients can spend months or years searching for answers. Elizabeth Clark saw six specialists before she learned about the Bateman Horne Center in Salt Lake City through a Facebook support group for people still struggling with long Covid.

The doctors Clark saw first said “‘We don’t know what to do about it. It’s not showing up on tests, so good luck,’” she said.

The nonprofit clinic diagnosed Clark in May with ME/CFS and postural orthostatic tachycardia syndrome, or POTS, which is an abnormality in the body’s ability to regulate heart rate when a person goes from lying down to standing. By that time the 51-year-old had been dealing with vertigo, fatigue, gastrointestinal issues, migraines, and dizziness ever since her initial Covid-19 infection in June 2020. The Bateman Horne Center is 45 minutes from Clark’s house in Provo, Utah.

“I’m lucky to have one this close,” she said.

In California, Lily Chu, who’s trained in internal medicine and serves as vice president of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, estimated there were only six known specialists to care for more than 160,000 Californians with the condition—prior to the pandemic in 2020.

“That is a huge number when we’re talking about chronically ill, complex patients who need a lot of time, effort, and resources.”

The CDC has been working to develop educational materials for physicians and recently entered into a five-year contract the Atlanta-based staffing company Synergy America Inc. to provide personnel to support the CDC’s work.

“Many of the ME/CSF experts are approaching retirement, and we want to make sure the next generation is educated and competent to care for these patients,” Unger said.

_{VIDEO: The scale and newness of the Covid-19 pandemic presents new questions about what treatments insurers will cover and who, ultimately, will pay for what could be years of medical care.}

Coding Woes

Still, doctors who specialize in ME/CFS say it’s easy to diagnose if physicians know what questions to ask.

“I have a checklist I can give a nurse to ask a patient,” said Benjamin Natelson, a professor of neurology at the Icahn School of Medicine at Mount Sinai in New York. “It’s really all self-report, but it really is raising the doctor’s awareness and having them ask those questions.”

Natelson’s assessment asks patients to rate how severely their fatigue has reduced their activity at work, in their personal life, social life, and time in school. It also asks patients to rate the severity of symptoms including unrefreshing sleep, difficulty with attention or concentration, aching joints and muscles, and how badly symptoms worsen after mild exertion.

Asking patients the appropriate questions, however, takes time. Charles Lapp, medical director of the Hunter-Hopkins Center, said an initial office visit with a ME/CFS patient at his clinic in Charlotte, N.C., can take three to four hours.

“Most doctors don’t have that kind of time,” he said.

Hunter-Hopkins doesn’t take insurance because insurers don’t reimburse enough to only see a few patients each day, Lapp said. The way health care is paid for in the U.S. pushes doctors to move quickly and see more patients.

Another problem facing providers is the lack of a diagnostic code, which insurance companies rely on to process claims. The international association Chu helps lead was one of seven groups that formally asked the National Center for Health Statistics in August to add one to the International Classifications of Diseases list.

Chronic fatigue syndrome is often coded as chronic fatigue, which can be a symptom of a host of things, including cancer, depression, and being overworked, Chu said. There is a code for myalgic encephalomyeltis, or ME, under post-viral fatigue, but she said most doctors don’t know that term.

More Research

While ME/CFS often follows a viral infection, its root cause is unknown and there is no cure. That’s why doctors say more research is needed now with the avalanche of new patients.

Congress provided $1.15 billion over four years for the National Institutes of Health to support research into the prolonged health consequences of Covid-19, and the agency last month awarded New York University Langone Health $470 million to create a network of large-scale studies. The academic medical center wouldn’t say if any of the studies will be focused on ME/CFS in long Covid patients.

The NIH spent $15 million on projects to research ME/CFS in 2020 and estimates it will spend another $15 million this year. The CDC, meanwhile, has $5.4 million in its operating budget for 2021 for ME/CFS, but advocates are pushing for more funding in 2022.

Fifty-three lawmakers, led by California Democratic Reps. Anna Eshoo and Zoe Lofgren, asked their colleagues in April to give the Department of Health and Human Services $15.4 million next year for the CDC to study ME/CFS and long Covid, also known as post-acute COVID-19 syndrome.

The Covid-19 Long Haulers Act, introduced in April by Rep. Don Beyer (D-Va.) and co-sponsored by Rep. Jack Bergman (R-Mich.), would authorize the HHS to spend $30 million in 2022 on educating the public and providers about long Covid. The bill specifically lists ME/CFS as one of the related post-infectious illnesses providers should be informed about.

Doctors say a silver lining of Covid-19 is that it’s bringing more awareness to ME/CFS and forcing physicians to recognize the condition.

“It’s thrusting the awareness of post-viral syndrome and these debilitating multi-system illnesses right into the forefront of medicine,” said Lucinda Bateman, medical director of Bateman Horne Center.”We’re going to have to accept it.”

—With assistance from Shira Stein and Jeannie Baumann