Mass vaccination and adjusted social behavior may finally get the pandemic under control. Then the medical world will have to turn its attention to the next chapter—millions of people suffering from long-haul COVID

By Stephen Leon

May 2, 2021

As the pandemic took hold in the United States in March 2020, Caroline, a healthy, athletic woman in her late 20s, began to feel unwell. There was no COVID-19 test to be had at that point, but she called her clinicians to describe mild to moderate symptoms such as fever, respiratory difficulty, gastro-intestinal irritation, and loss of taste and smell—which came and went, and not all at the same time.

Caroline’s clinicians diagnosed her remotely as having COVID.

The fever, the teeth chattering, and the gastro symptoms went away—but not the fatigue, the body pains, or the neurocognitive symptoms, including sleep disturbance. Ten days later, 20 days later, a month later, she still hadn’t fully recovered.

Finally, eight months or so after the onset, Caroline had a COVID test, but it was negative, and an antibody test showed no antibodies. And without a positive test or antibodies in her system, she has found it difficult to find someone to treat or manage her condition. Most clinicians tell her that her persistent symptoms might or might not be COVID. And some say things like, “I have no idea what to tell you,” or “Are you sure this isn’t stress?”

Dan, in his late 30s, is a care provider for diagnosed COVID patients and their families. For a while, he continued to test negative, but began having symptoms about eight months ago. He was never hospitalized, and never had a positive test, without which the clinician who was seeing him would not diagnose him, in spite of all of the clinical indicators.

Dan still suffers from many long-term symptoms; his new clinician is helping him put together a team of specialists to develop and manage his treatment.

Caroline and Dan appear to suffer from what has come to be known as “long-haul COVID,” in which some manifestations of their illness just don’t go away, with symptoms sometimes mimicking those of other types of chronic illness.

In fact, more prior investment in chronic illnesses, and a better understanding of how they work, could have helped us to prepare for long-haul COVID, says Ken Friedman, Ph.D., a retired professor of pharmacology and physiology and a longtime researcher of chronic conditions. Instead, the medical establishment in the United States has been slow to recognize and research chronic illness, and soon will pay the price: dealing with an onslaught of as many as 9 million long-haul COVID cases in the coming years in the United States alone, based on Friedman’s statistical analysis of recorded COVID cases.

Patricia Fennell, MSW, LCSW-R, a researcher and clinician who has been researching and treating chronic illness for more than 30 years, agrees with Friedman’s assessment. “The medical establishment,” she says, “has been slow to recognize the need for specific treatment approaches for the chronically ill, and to integrate them into their medical education curricula. And from what I can already see in requests for treatment of long-haul COVID, we are not prepared for what’s coming.”

So far, Friedman warns, “we have not seen a response proportional to the severity of the crisis that is about to befall us.”

***

Friedman, a Brooklyn native, has a combined degree in biology and chemistry from Lawrence College in Appleton, Wisc., and a Ph.D. from the State University of New York at Stony Brook, and was a postdoctoral National Institutes of Health fellow at UCLA before becoming a staff fellow at NIH. From there, he became an assistant professor at New Jersey Medical School in Newark. Friedman had decided he didn’t want to be a doctor—“I really didn’t like the sight of blood”—and was more interested in helping people through research.

One day, his desire to help people hit so close to home that it forever changed the trajectory of his research career.

Friedman’s teenage daughter, Deborah, was an academic standout and was admitted to Tufts University after her junior year of high school. But after a few months at college, she became very ill, and explained her symptoms to her father. “I said, ‘Honey, you have mono. Go to student health services. Mono is very common in college students. They’ll know what to do.’ ”

“That was the biggest mistake of my and her life,” he says. “They missed the diagnosis, told her she had depression, and sent her back to her dorm room. Eventually she got so sick that she called me one afternoon and said, ‘If you don’t rescue me, I’m going to drown in my own vomit.’ ”

“I was five hours away and couldn’t do it,” Friedman says, but he did track down a nurse to look in on her, and she took Deborah to her house for observation. After two days, the nurse called him up, and said, “I don’t know what the hell she has, but you better come get her.”

When Friedman finally picked up his daughter in Boston, he had to carry her into the car, and then carry her out again when they arrived home in New Jersey. He began taking her around to see other faculty at New Jersey Medical School, where he taught.

“Everyone at my medical school threw up their hands and said, ‘I can’t help you’,” Friedman recalls. “If a faculty member can’t get help at his own medical school, what is the recourse?”

Friedman began poring over the available literature on Deborah’s symptoms, and eventually decided she had chronic fatigue syndrome (now known as myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS). One of his colleagues was studying it, but he wouldn’t see Deborah because she hadn’t been sick long enough; a patient had to be ill for six months or more to get a CFS diagnosis.

“So I went back to the literature, and I found that physical therapy was sometimes helpful.” Friedman found a physical therapist who did something called “Rolfing,” a process that reorganizes the body’s connective tissues, named after its founder, Dr. Ida P. Rolf. This therapy had shown some success with CFS patients, and it did help to get Deborah walking again.

As she gradually began to improve, she wanted to go back to school. “We warned her of her limits,” Friedman says, but as she was young, she sometimes exceeded them. It took six years, but she did get her degree.

After graduation, Deborah Friedman worked for companies like Raytheon and Lockheed. “It was a struggle,” her father remembers, but “eventually she applied for and obtained a position with the Johns Hopkins Applied Physics Laboratory in Baltimore.”

The long hours and pressures of that job caused her to “crash severely,” Friedman says, “to the point where we had to sell everything she had and bring her up to Vermont, where [Friedman and his wife Ruth] were living, to resuscitate her.” Finally, she went back to Harvard Adult Extension, where she could take one course at a time, and received a master’s degree about a year ago.

“Having a chronically ill child was not something that we had envisioned,” Friedman says. “It is life-changing not only for the patient, but for the parents. My initial objective was to solve it, to cure her. And that was based upon the belief that this was a disease like any other disease,” caused by an infectious agent, “and therefore cured by the removal of that infectious agent.”

“And that belief was based on what was written in the medical literature. But the medical literature is wrong.”

***

“For many doctors, the strange symptomology of long-haul COVID calls to mind another mysterious, poorly understood condition: myalgic encephalomyelitis, more familiarly known as chronic fatigue syndrome,” wrote Moises Velasquez-Manoffin in a January 21 New York Times article titled “What If You Never Get Better From COVID-19?”

Velasquez-Manoff went on to point out that “ME/CFS-like syndromes have been linked with infections for more than a century—including, most recently, those caused by the viruses responsible for the SARS and H1N1 pandemics in 2003 and 2009.”

And according to Fennell, there is growing evidence that COVID-19 already has ignited a public-health crisis that will persist long after vaccinations help us reach “herd immunity” and many of us put our masks away. “We are getting increasing numbers of requests from medical professionals who either have personally suffered COVID with the long-term symptoms themselves, or their family members have,” Fennell says. “We are also getting requests for consultation from physicians who are overwhelmed by the emotional burden of caring for COVID-19 patients. Some of these clinicians are traumatized from the care they are providing, and are suffering long-term after-effects themselves, which is part of the larger, expanding public health issue of COVID-19.”

In addition to SARS and H1N1, Friedman says, there are “post-acute infectious syndromes” associated with many infectious diseases, among them, mononucleosis, Ebola virus disease, and Lyme disease.

But some of the early research into long-haul COVID and its treatment has not taken past research into account. “What they have done,” Friedman says, “is they have ignored the relevant data of other diseases. Why aren’t we looking at these all together?”

Friedman and some other researchers contend that where symptoms of long COVID are similar to those in patients suffering chronic illness in the post-acute phase of any of these diseases, treatments previously developed for those diseases may be effective for long COVID.

“Obviously we want to learn as much as we can about each new [infectious disease],” Friedman says, “but in the meantime, treatments have been developed for symptoms which are similar across the spectrum. Why not apply what we already know, and consider how the diseases may be similar?”

“Diseases tend to be viewed as silos,” he continues, “as unique symptoms that have to be treated as no other disease is treated. The treatment is only effective for that one disease and does not apply to any others. That is not true.”

“The body does not care what the infective agent is.”

He offers the analogy that the body has a finite playbook of responses for infection, and it will employ those responses to the best of its ability to overcome the infection.

But, Friedman says, in long-haul COVID—as in ME/CFS—the body’s response is “overblown.”

“The plays in the playbook are not perfect. And some of those plays can do damage. Where medicine comes in, is that sometimes the physician can control the plays in the playbook so that they do not do damage.”

The failure to apply models of care previously developed for ME/CFS, Friedman suggests, is a symptom of a more grave issue: The medical establishment still does not fully recognize chronic illness “as a serious medical condition worthy of treatment. I think that most chronic illnesses are not given as serious a consideration as are acute illnesses.”

With acute illness, he continues, “you go to a physician and describe your symptoms, your physician develops a theory of what is wrong with you. … And once the underlying cause is found, the physician will know how to treat it. But for these chronic illnesses that don’t have a ‘tell,’ it becomes much more difficult to diagnose, and much more difficult to treat. So that’s why these conditions are not treated.”

And the U.S. government, he adds, “was very narrow in its approach to dealing with the pandemic. They put all of their eggs in one basket and focused on developing a vaccine, and avoided development of a treatment.”

“The CDC already has a model of care in place that would work for long-haul COVID, and that model of care is the model they developed for ME/CFS. The question is, ‘Why they would not implement that model of care now?’ ”

“If they would fully implement that model, both the ME/CFS patients and the long-haul COVID patients would be receiving care right now.”

“Going back 30 years,” says Fennell, “I, among others, have developed treatment approaches for long-term chronic illness. They are there. They should be adapted and used.”

Instead, Friedman fears, most people are not aware of or prepared for the “dim picture” that awaits us down the road, with between 3 and 9 million people suffering from long-haul COVID, according to his statistical model.

“That’s a lot of people.”

Potentially making matters worse, 3–9 million long-haulers is a projection based on the number of people who had been diagnosed with COVID as of a few weeks ago. But two current trends do not bode well: (1) the refusal of a significant number of persons in the United States to be vaccinated, and (2) the ongoing failure by the FDA to approve any treatment of COVID in its early stages. If these trends continue, then the number of long-haulers is likely to exceed the estimate.  

“The prognosis in terms of disability, and the number of people requiring social and financial support, is going to be very large in comparison to other diseases,” says Friedman. “And that should be a concern.”

END

Copyright 2021 Stephen Leon

This story also appears on the blog at albanyhealthmanagement.com, the website of Albany Health Management Associates, Inc., Patricia Fennell, president.

Effective April 26, 2021, Kenneth Friedman has received an academic appointment as adjunct associate professor, Department of Medicine, School of Osteopathic Medicine, Rowan University, Stratford, N.J.