A Third of Long Haulers Have ‘FibroCOVID’

By Pat Anson, PNN Editor

Nearly a third of patients with long-haul covid have symptoms strikingly similar to fibromyalgia, according to a new study by Italian researchers who say being male and obese are strong risk factors for developing “FibroCOVID.”  

“In the light of the overwhelming numbers of the SARS-CoV-2 pandemic, it is reasonable to forecast that rheumatologists will face up with a sharp rise of cases of a new entity that we defined (as) ‘FibroCOVID’ to underline potential peculiarities and differences,” wrote lead author Francesco Ursini, MD, an Associate Professor of Rheumatology at the University of Bologna.

The study findings, published online in RMD Open: Rheumatic & Musculoskeletal Diseases, are based on a survey of over 600 patients with post-acute COVID-19 – also known as "long COVID."

Nearly 31% of the long-haulers had musculoskeletal pain, fatigue, cognitive impairment and sleep disturbances – classic symptoms of fibromyalgia, as defined by the American College of Rheumatology.

Unlike traditional fibromyalgia, which primarily affects women, a higher percentage of men (43%) had symptoms of FibroCOVID. They were also more likely to be obese, have high blood pressure, and a severe COVID-19 infection.

“Globally, respondents with FM (fibromyalgia) exhibited features suggestive of a more serious form of COVID-19, including a higher rate of hospitalisation and more frequent treatment with supplemental oxygen,” Ursini and his colleagues reported. “Taken together, our data suggest a speculative mechanism in which obesity and male gender synergistically affect the severity of COVID-19 that, in turn, may rebound on the risk of developing post-COVID-19 FM syndrome and determine its severity.”

The long-term effects of a COVID-19 infection are currently unknown. While some patients have minor symptoms and recover quickly, about a third will develop long COVID and have symptoms that persist for several months after the initial infection.  

Previous studies of long-haul covid have also found similarities with autoimmune conditions such as lupus and myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS).  

Vaccines Cut Risk of Long Covid

Being fully vaccinated against COVID-19 cuts the risk of developing long covid in half, according to a new UK study. Researchers at King’s College London looked at health data from a mobile app used by millions of people in the UK and found that those who received two doses of the Moderna, Pfizer or AstraZeneca vaccines had significantly lower risk of a “breakthrough” infection that turns into long covid.

“We found that the odds of having symptoms for 28 days or more after post-vaccination infection were approximately halved by having two vaccine doses. This result suggests that the risk of long COVID is reduced in individuals who have received double vaccination, when additionally considering the already documented reduced risk of infection overall,” researchers reported in the journal The Lancet Infectious Diseases.

“Almost all individual symptoms of COVID-19 were less common in vaccinated versus unvaccinated participants, and more people in the vaccinated than in the unvaccinated groups were completely asymptomatic.”

Fully vaccinated.people aged 60 or older were more likely to have no symptoms of a breakthrough infection, according to researchers.

Why Covid Infections Leave Some Patients in Chronic Pain

By Gabriella Kelly-Davies, PNN Columnist

Around the world many people who have recovered from even mild episodes of COVID-19 are presenting to doctors with unrelenting headaches, persistent and intense muscle and joint pain, and other forms of chronic pain that mimic conditions such as fibromyalgia.

Professor Gregory Dore, from the University of New South Wales’ Kirby Institute, is studying the health of people recovering from COVID-19. Known as ADAPT, the study started enrolling patients last year at St. Vincent’s Hospital in Sydney during the first wave of the pandemic in Australia. Most of the patients reported mild or moderate COVID symptoms.

One aspect of the ADAPT study is looking at neurological markers that reflect inflammation in the nervous system. The results aren’t public yet, but Dore says the findings are consistent with neuro-inflammation, which can appear in conditions such as persistent headache and nerve pain.

“We are seeing many patients with headaches so severe they require an MRI,” Dore said. “Headache can be part of the acute illness, but it is also persisting in many patients months after they recovered from the initial infection. It’s much more prevalent than in the general population.”

Dore is surprised by the number of “long haul” COVID patients who are presenting with ongoing neurological conditions four and eight months after they recovered from the initial infection.

“This was a pretty healthy group,” he said. “Most of the people we saw in the first wave of COVID were coming back from overseas. They were doing things like skiing and traveling and were a healthy bunch. I initially thought most people would have recovered by six months, but it seems to be ongoing. Immunology tells us there could be an ongoing immune response that is causing the neurological conditions, including pain.”

Neurological Infections

Dr. Daniel Carr, a prominent American pain specialist at Tufts University School of Medicine, says there are three primary mechanisms underpinning chronic pain after an acute COVID infection.

One is a direct attack by the virus on a variety of tissues such as nerves, the spinal cord and brain. Another is overactive inflammatory cascades attacking the body’s tissues and organs. This means one area of inflammation can ignite another in a continuous chain reaction and spread throughout the body. The third way is excessive blood clotting provoked by the virus, which may lead to gangrene, limb amputation and phantom limb pain.

Professor Bart Morlion, former president of the European Pain Federation and Director of the Leuven Center for Pain Management in Belgium, agrees. In the rehabilitation centre at his hospital, he is seeing patients with three forms of chronic pain following an acute COVID infection. Nerve pain is common because if the virus attacks the spinal cord, it can leave the patient with scarring of the spinal cord and intractable pain.

“I’ve seen patients who developed paraplegia because of an acute inflammation of the spinal cord induced by COVID-19, which is comparable to what we see in paraplegic patients after spinal cord injury,” Morlion explained. “There are also cases of encephalitis, meaning the virus infected brain tissue.”

The same is true when the COVID infection triggers a stroke. Patients can develop chronic nerve pain or widespread pain throughout the body, which is difficult to manage.

Morlion has seen several patients who have secondary pain problems after a COVID infection. Some patients developed thromboembolism – a closure of their arteries and small blood vessels – and developed gangrene in their limbs. To save their lives, surgeons had to amputate their arms or legs.

“We have patients in rehabilitation who lost both legs and arms because of COVID,” Morlion said, “and they have developed phantom limb pain.”

COVID patients who stayed in intensive care on a ventilator for an extended period are also ending up with chronic pain conditions. Morlion has treated many patients who’ve developed a painful infection of the small fibres in the nervous system. Patients who lay flat their stomachs while in intensive care to enhance their breathing are also developing chronically painful shoulders and elbows because of damage to the joints and nerves.

“If an intensive care nurse had to take care of five patients who required turning every few hours, then it happens that for instance, the elbow isn’t protected enough, leading to ‘park bench syndrome’ where the patient gets a chronically numb and painful little finger, because of the prolonged pressure on their elbow,” Morlion said. “Turning itself is always a risk for nerve and joint damage because these patients are floppy and can’t move into a comfortable position.”

COVID is also intensifying pre-existing pain conditions. One-fifth of the world’s population live with chronic pain, and Morlion is seeing many of these patients in his pain centre because their previously well managed chronic pain has increased by orders of magnitude after recovering from an acute COVID infection.

Dr. Marc Russo, an Australian pain physician, believes that special research units need to be set up to enable doctors to collect data on chronic pain conditions so dedicated treatments can be designed.

“We need one in Sydney and another in Melbourne that are multidisciplinary and include a pain physician, immunologist, infectious disease physician, rehabilitation physician and nursing case manager,” he said.

Chronic pain was already one of the major causes of disability before COVID-19, but it looks like the pandemic has swelled the number of people living with intractable pain. Our health systems must invest in the multidisciplinary pain management services needed to ease the  suffering caused by the multiple pain conditions resulting from COVID infection.

Gabriella Kelly-Davies is a PhD student at Sydney University who lives with chronic migraine.

Gabriella is the author of “Breaking Through the Pain Barrier,” a biography of her physician, Dr. Michael Cousins, who co-founded Painaustralia and is a world renowned expert in pain management.

Long-Haul Covid Draws Needed Attention to Dysautonomia

By Cindy Loose, Kaiser Health News

The day Dr. Elizabeth Dawson was diagnosed with covid-19 in October, she awoke feeling as if she had a bad hangover. Four months later she tested negative for the virus, but her symptoms have only worsened.

Dawson is among what one doctor called “waves and waves” of long-haul covid patients who remain sick long after retesting negative for the virus. A significant percentage are suffering from syndromes that few doctors understand or treat. In fact, a yearlong wait to see a specialist for these syndromes was common even before the ranks of patients were swelled by post-covid newcomers. For some, the consequences are life altering.

Before fall, Dawson, 44, a dermatologist from Portland, Oregon, routinely saw 25 to 30 patients a day, cared for her 3-year-old daughter and ran long distances.

Today, her heart races when she tries to stand. She has severe headaches, constant nausea and brain fog so extreme that, she said, it “feels like I have dementia.” Her fatigue is severe: “It’s as if all the energy has been sucked from my soul and my bones.” She can’t stand for more than 10 minutes without feeling dizzy.

Through her own research, Dawson recognized she had typical symptoms of postural orthostatic tachycardia syndrome, or POTS. It is a disorder of the autonomic nervous system, which controls involuntary functions such as heart rate, blood pressure and vein contractions that assist blood flow.

It is a serious condition which affects many patients who have been confined to bed a long time with illnesses like covid as their nervous system readjusts to greater activity. POTS sometimes overlaps with autoimmune problems, which involve the immune system attacking healthy cells. Before covid, an estimated 3 million Americans had POTS.

Few Doctors Treat Autonomic Disorders

Many POTS patients report it took them years to even find a diagnosis. With her own suspected diagnosis in hand, Dawson soon discovered there were no specialists in autonomic disorders in Portland — in fact, there are only 75 board-certified autonomic disorder doctors in the U.S.

In January, Dawson called a neurologist at a Portland medical center where her father had worked and was given an appointment for September. She then called Stanford University Medical Center’s autonomic clinic in California, and again was offered an appointment nine months later.

Using contacts in the medical community, Dawson wrangled an appointment with the Portland neurologist within a week and was diagnosed with POTS and chronic fatigue syndrome (CFS). The two syndromes have overlapping symptoms, often including severe fatigue.

Dr. Peter Rowe of Johns Hopkins in Baltimore, a prominent researcher who has treated POTS and CFS patients for 25 years, said every doctor with expertise in POTS is seeing long-haul covid patients with POTS, and every long-covid patient he has seen with CFS also had POTS. He expects the lack of medical treatment to worsen.

“Decades of neglect of POTS and CFS have set us up to fail miserably,” said Rowe, one of the authors of a recent paper on CFS triggered by covid.

The prevalence of POTS was documented in an international survey of 3,762 long-covid patients, leading researchers to conclude that all covid patients who have rapid heartbeat, dizziness, brain fog or fatigue “should be screened for POTS.”

A “significant infusion of health care resources and a significant additional research investment” will be needed to address the growing caseload, the American Autonomic Society said in a recent statement.

Lauren Stiles, who founded the nonprofit Dysautonomia International in 2012 after being diagnosed with POTS, said patients who have suffered for decades worry about “the growth of people who need testing and treating but the lack of growth in doctors skilled in autonomic nervous system disorders.”

On the other hand, she hopes increasing awareness among physicians will at least get patients with dysautonomia diagnosed quickly, rather than years later. Dysautonomia International provides a list of a handful of clinics and about 150 U.S. doctors who have been recommended by patients.

Congress has allocated $1.5 billion to the National Institutes of Health over the next four years to study post-covid conditions. Requests for proposals have already been issued.

“There is hope that this miserable experience with covid will be valuable,” said Dr. David Goldstein, head of NIH’s Autonomic Medicine Section.

A unique opportunity for advances in treatment, he said, exists because researchers can study a large sample of people who got the same virus at roughly the same time, yet some recovered and some did not.

‘Huge Influx of Patients’

Long-term symptoms are common. A University of Washington study published in February in the Journal of the American Medical Association’s Network Open found that 27% of covid survivors ages 18-39 had persistent symptoms three to nine months after testing negative for covid. The percentage was slightly higher for middle-aged patients, and 43% for patients 65 and over.

The most common complaint: persistent fatigue. A Mayo Clinic study published last month found that 80% of long-haulers complained of fatigue and nearly half of “brain fog.” Less common symptoms are inflamed heart muscles, lung function abnormalities and acute kidney problems.

Larger studies remain to be conducted. However, “even if only a tiny percentage of the millions who contracted covid suffer long-term consequences,” said Rowe, “we’re talking a huge influx of patients, and we don’t have the clinical capacity to take care of them.”

Symptoms of autonomic dysfunction are showing up in patients who had mild, moderate or severe covid symptoms.

Yet even today, some physicians discount conditions like POTS and CFS, both much more common in women than men. With no biomarkers, these syndromes are sometimes considered psychological.

The experience of POTS patient Jaclyn Cinnamon, 31, is typical. She became ill in college 13 years ago. The Illinois resident, now on the patient advisory board of Dysautonomia International, saw dozens of doctors seeking an explanation for her racing heart, severe fatigue, frequent vomiting, fever and other symptoms.

For years, without results, she saw specialists in infectious disease, cardiology, allergies, rheumatoid arthritis, endocrinology and alternative medicine — and a psychiatrist, “because some doctors clearly thought I was simply a hysterical woman.”

It took three years for her to be diagnosed with POTS. The test is simple: Patients lie down for five minutes and have their blood pressure and heart rate taken. They then either stand or are tilted to 70-80 degrees and their vital signs are retaken. The heart rate of those with POTS will increase by at least 30 beats per minute, and often as much as 120 beats per minute within 10 minutes. POTS and CFS symptoms range from mild to debilitating.

The doctor who diagnosed Cinnamon told her he didn’t have the expertise to treat POTS. Nine years after the onset of the illness, she finally received treatment that alleviated her symptoms. Although there are no federally approved drugs for POTS or CFS, experienced physicians use a variety of medicines including fludrocortisone, commonly prescribed for Addison’s disease, that can improve symptoms.

Some patients are also helped by specialized physical therapy that first involves a therapist assisting with exercises while the patient is lying down, then later the use of machines that don’t require standing, such as rowing machines and recumbent exercise bicycles. Some recover over time; some do not.

Dawson said she can’t imagine the “darkness” experienced by patients who lack her access to a network of health care professionals. A retired endocrinologist urged her to have her adrenal function checked. Dawson discovered that her glands were barely producing cortisol, a hormone critical to vital body functions.

Medical progress, she added, is everyone’s best hope.

Stiles, whose organization funds research and provides physician and patient resources, is optimistic.

“Never in history has every major medical center in the world been studying the same disease at the same time with such urgency and collaboration,” she said. “I’m hoping we’ll understand covid and post-covid syndrome in record time.”

Kaiser Health News is a national newsroom that produces in-depth journalism about health issues.

Vaccines Help Some Covid Long Haulers

By Will Stone, Kaiser Health News

An estimated 10% to 30% of people who get covid-19 suffer from lingering symptoms of the disease, or what’s known as “long covid.”

Judy Dodd, who lives in New York City, is one of them. She spent nearly a year plagued by headaches, shortness of breath, extreme fatigue and problems with her sense of smell, among other symptoms.

Dodd worried that this “slog through life” was going to be her new normal. But everything changed after she got her covid vaccine.

“I was like a new person. It was the craziest thing ever,” said Dodd, referring to how many of her health problems subsided significantly after her second shot.

As the U.S. pushes to get people vaccinated, a curious benefit is emerging for those with this post-illness syndrome: Their symptoms are easing and, in some cases, fully resolving after vaccination.

It’s the latest clue in the immunological puzzle of long covid, a still poorly understood condition that leaves some who get infected with wide-ranging symptoms months after the initial illness.

The notion that a vaccine aimed at preventing the disease may also treat it has sparked optimism among patients, and scientists who study the post-illness syndrome are taking a close look at these stories.

“I didn’t expect the vaccine to make people feel better,” said Akiko Iwasaki, an immunologist at the Yale School of Medicine who’s researching long covid.

“More and more, I started hearing from people with long covid having their symptoms reduced or completely recovering, and that’s when I started to get excited because this might be a potential cure for some people.”

While promising, it’s still too early to know just how many people with long covid feel better as a result of being vaccinated and whether that amounts to a statistically meaningful difference.

In the meantime, Iwasaki and other researchers are beginning to incorporate this question into ongoing studies of long haulers by monitoring their symptoms pre- and post-vaccination and collecting blood samples to study their immune response.

There are several leading theories for why vaccines could alleviate the symptoms of long covid: It’s possible the vaccines clear up leftover virus or fragments, interrupt a damaging autoimmune response or in some other way “reset” the immune system.

“It’s all biologically plausible and, importantly, should be easy to test,” said Dr. Steven Deeks of the University of California-San Francisco, who is also studying the long-term impacts of the coronavirus on patients.

Patient Stories Offer Hope

Before getting the vaccine, Dodd, who’s in her early 50s, said she felt as if she had aged 20 years. She had trouble returning to work, and even simple tasks left her with a crushing headache and exhaustion.

“I’d climb the subway stairs and I’d have to stop at the top, take my mask off just to get air,” Dodd said.

After she got her first dose of the Pfizer vaccine in January, many of Dodd’s symptoms flared up, so much so that she almost didn’t get her second dose.

But she did — and a few days later, she noticed her energy was back, breathing was easier and soon even her problems with smell were resolving.

“It was like the sky had opened up. The sun was out,” she said. “It’s the closest I’ve felt to pre-covid.”

In the absence of large studies, researchers are culling what information they can from patient stories, informal surveys and clinicians’ experiences. For instance, about 40% of the 577 long-covid patients contacted by the group Survivor Corps said they felt better after getting vaccinated.

Among the patients of Dr. Daniel Griffin at Columbia University Medical Center in New York, “brain fog” and gastrointestinal problems are two of the most common symptoms that seem to resolve post-vaccination.

Griffin, who is running a long-term study of post-covid illness, initially estimated that about 30% to 40% of his patients felt better. Now, he believes the number may be higher, as more patients receive their second dose and see further improvements.

“We’ve been sort of chipping away at this [long covid] by treating each symptom,” he said. “If it’s really true that at least 40% of people have significant recovery with a therapeutic vaccination, then, to date, this is the most effective intervention we have for long covid.”

A small U.K. study, not yet peer-reviewed, found about 23% of long-covid patients had an “increase in symptom resolution” post-vaccination, compared with about 15% of those who were unvaccinated.

But not all clinicians are seeing the same level of improvement.

Clinicians at post-covid clinics at the University of Washington in Seattle, Oregon Health & Science University in Portland, National Jewish Health in Denver and the University of Pittsburgh Medical Center say only a small number of patients — or none at all — have reported feeling better after vaccination.

“I’ve heard anecdotes of people feeling worse, and you can scientifically come up with an explanation for it going in either direction,” said UCSF’s Deeks.

Why Are Patients Feeling Better?

There are several theories for why vaccines could help some patients — each relying on different physiological understandings of long covid, which manifests in a variety of ways.

“The clear story is that long covid isn’t just one issue,” said Dr. Eric Topol, director of the Scripps Research Translational Institute, which is also studying long covid and the possible therapeutic effects of vaccination.

Some people have fast resting heart rates and can’t tolerate exercise. Others suffer primarily from cognitive problems, or some combination of symptoms like exhaustion, trouble sleeping and issues with smell and taste, he said.

As a result, it’s likely that different therapies will work better for some versions of long covid than others, said Deeks.

One theory is that people who are infected never fully clear the coronavirus, and a viral “reservoir,” or fragments of the virus, persist in parts of the body and cause inflammation and long-term symptoms, said Iwasaki, the Yale immunologist.

According to that explanation, the vaccine might induce an immune response that gives the body extra firepower to beat back the residual infection.

“That would actually be the most straightforward way of getting rid of the disease, because you’re getting rid of the source of inflammation,” Iwasaki said.

Griffin at Columbia Medical Center said this “viral persistence” idea is supported by what he’s seeing in his patients and hearing from other researchers and clinicians. He said patients seem to be improving after receiving any of the covid vaccines, generally about “two weeks later, when it looks like they’re having what would be an effective, protective response.”

Another possible reason that some patients improve comes from the understanding of long covid as an autoimmune condition, in which the body’s immune cells end up damaging its own tissues.

A vaccine could hypothetically kick into gear the “innate immune system” and “dampen the symptoms,” but only temporarily, said Iwasaki, who has studied the role of harmful proteins, called autoantibodies, in covid.

This self-destructive immune response happens in a subset of covid patients while they are ill, and the autoantibodies produced can circulate for months later. But it’s not yet clear how that may contribute to long covid, said John Wherry, director of the Institute for Immunology at the University of Pennsylvania.

Another theory is that the infection has “miswired” the immune system in some other way and caused chronic inflammation, perhaps like chronic fatigue syndrome, Wherry said. In that scenario, the vaccination might somehow “reset” the immune system.

With more than 77 million people fully vaccinated in the U.S., teasing apart how many of those with long covid would have improved even without any intervention is difficult.

“Right now, we have anecdotes; we’d love it to be true. Let’s wait for some real data,” said Wherry.

This story is part of a partnership that includes NPR and Kaiser Health News (KHN), a national newsroom that produces in-depth journalism about health issues.

How Long Haul Covid Alters the Immune System

By Liz Szabo, Kaiser Health News

There’s a reason soldiers go through basic training before heading into combat: Without careful instruction, green recruits armed with powerful weapons could be as dangerous to one another as to the enemy.

The immune system works much the same way. Immune cells, which protect the body from infections, need to be “educated” to recognize bad guys — and to hold their fire around civilians.

In some Covid-19 patients, this education may be cut short. Scientists say unprepared immune cells appear to be responding to the coronavirus with a devastating release of chemicals, inflicting damage that may endure long after the threat has been eliminated.

“If you have a brand-new virus and the virus is winning, the immune system may go into an ‘all hands on deck’ response,” said Dr. Nina Luning Prak, co-author of a January study on Covid and the immune system. “Things that are normally kept in close check are relaxed. The body may say, ‘Who cares? Give me all you’ve got.’”

While all viruses find ways to evade the body’s defenses, a growing field of research suggests that the coronavirus unhinges the immune system more profoundly than previously realized.

Some Covid survivors have developed serious autoimmune diseases, which occur when an overactive immune system attacks the patient, rather than the virus. Doctors in Italy first noticed a pattern in March 2020, when several Covid patients developed Guillain-Barré syndrome, in which the immune systems attacks nerves throughout the body, causing muscle weakness or paralysis.

As the pandemic has surged around the world, doctors have diagnosed patients with rare, immune-related bleeding disorders. Other patients have developed the opposite problem, suffering blood clots that can lead to stroke.

All these conditions can be triggered by “autoantibodies” — rogue antibodies that target the patient’s own proteins and cells. In a report published in October, researchers even labeled the coronavirus “the autoimmune virus.”

Although doctors are researching ways to overcome immune disorders in Covid patients, new treatments will take time to develop. Scientists are still trying to understand why some immune cells become hyperactive — and why some refuse to stand down when the battle is over.

Key immune players called “helper T cells” typically help antibodies mature. If the body is invaded by a pathogen, however, these T cells can switch jobs to hunt down viruses, acting more like “killer T cells,” which destroy infected cells. When an infection is over, helper T cells usually go back to their old jobs.

In some people with severe Covid, however, helper T cells don’t stand down when the infection is over, said James Heath, a professor and president of Seattle’s Institute for Systems Biology.

About 10% to 15% of hospitalized Covid patients Heath studied had high levels of these helper T cells, which were still looking for the enemy long after it had been eliminated. He’s now studying whether these overzealous T cells might inflict damage that leads to chronic illness or symptoms of autoimmune disease.

“These T cells are still there months later and they’re aggressive,” Heath said. “They’re on the hunt.”

Friendly Fire

Covid appears to confuse multiple parts of the immune system. In some patients, Covid triggers autoantibodies that target the immune system itself, leaving patients without a key defense against the coronavirus.

In October, a study published in Science led by Rockefeller University’s Jean-Laurent Casanova showed that about 10% of Covid patients become severely ill because they have antibodies against an immune system protein called interferon.

Disabling interferon is like knocking down a castle’s gate. Without these essential proteins, invading viruses can overwhelm the body and multiply wildly.

New research shows that the coronavirus may activate preexisting autoantibodies, as well as prompt the body to make new ones. In the January study, half of the hospitalized Covid patients had autoantibodies, compared with fewer than 15% of healthy people.

Other research has produced similar findings. In a study out in December, researchers found that hospitalized Covid patients harbored a diverse array of autoantibodies.

While some patients studied had antibodies against virus-fighting interferons, others had antibodies that targeted the brain, thyroid, blood vessels, central nervous system, platelets, kidneys, heart and liver, said Dr. Aaron Ring, assistant professor of immunology at Yale School of Medicine.

Similarities With Lupus

Some patients had antibodies associated with lupus, a chronic autoimmune disorder that can cause pain and inflammation in any part of the body. Covid patients rife with autoantibodies tended to have the severest disease, said Ring, who was surprised at the level of autoantibodies in some patients.

“They were comparable or even worse than lupus,” Ring said.

Researchers would like to know if lingering autoantibodies contribute to the symptoms of “long Covid,” which afflicts one-third of covid survivors up to nine months after infection, according to a new study in JAMA Network Open.

“Long haulers” suffer from a wide range of symptoms, including debilitating fatigue, shortness of breath, cough, chest pain and joint pain. Other patients experience depression, muscle pain, headaches, intermittent fevers, heart palpitations and problems with concentration and memory, known as brain fog.

Less commonly, some patients develop an inflammation of the heart muscle, abnormalities in their lung function, kidney issues, rashes, hair loss, smell and taste problems, sleep issues and anxiety.

The National Institutes of Health has announced a four-year initiative to better understand long Covid, using $1.15 billion allocated by Congress.

Ring said he’d like to study patients over time to see if specific symptoms might be explained by lingering autoantibodies.

“We need to look at the same patients a half-year later and see which antibodies they do or don’t have,” he said. If autoantibodies are to blame for long Covid, they could “represent an unfortunate legacy after the virus is gone.”

Kaiser Health News is a nonprofit news service covering health issues. It is not affiliated with Kaiser Permanente.

Long-Haul Covid Shedding New Light on Chronic Fatigue Illness

By Kevin Cool, Kaiser Health News

Four weeks after San Diego pediatric nurse Jennifer Minhas fell ill with covid-19 last March, her cough and fever had resolved, but new symptoms had emerged: chest pain, an elevated heart rate and crushing fatigue.

Her primary care physician told her she was just anxious, and that none of her other covid patients had those issues. “That wasn’t what I needed to hear,” Minhas said.

At times, she’s been too exhausted to hold up her head. “I was kind of a zombie for months, shuffling around unable to do much of anything.”

The clinical term for the flattening fatigue Minhas describes is “post-exertional malaise.” It is a common symptom among patients who have not recovered from covid. It is also consistent with a standard feature of another chronic illness: myalgic encephalomyelitis, also known as chronic fatigue syndrome, or ME/CFS.

ME/CFS patients also report cognitive impairment — “brain fog” — and orthostatic intolerance, in which standing upright produces a racing heart rate and lightheadedness. Minhas has experienced these symptoms, as have many other “long-haulers,” the tens of thousands of post-covid patients who haven’t recovered.

The percentage of covid patients who become long haulers is hard to pin down — in part because many early covid patients were not tested in time to detect the virus. But “long covid” is potentially an enormous problem. A recent study of 1,733 covid patients in Wuhan, China, found three-quarters of them still had symptoms six months after being released from the hospital.

As of January, doctors had documented more than 21 million cases of covid in the United States. “If just 5 percent develop lingering symptoms,’’ — about 1 million cases — “and if most of those with symptoms have ME/CFS, we would double the number of Americans suffering from ME/CFS in the next two years,” Harvard Medical School professor Dr. Anthony Komaroff wrote recently in the Harvard Health Letter.

ME/CFS Linked to Viral Infections

The cause of ME/CFS is unknown, but multiple studies have found it follows acute infections with viruses — everything from the 1918 Spanish flu to Ebola. “A certain percentage of people don’t recover,” said Leonard Jason, a researcher at DePaul University.

Scientists are trying to figure out the mechanisms of the disease and why it develops in certain people and not others. According to the Centers for Disease Control and Prevention, ME/CFS shares certain characteristics with autoimmune diseases, in which the immune system attacks healthy tissue in the body. Multiple studies are underway to explore this and other potential causes.

Doctors who specialize in treating ME/CFS are beginning to pivot to long-covid patients. Dr. Peter Rowe, whose clinic at Johns Hopkins is one of the country’s leading centers for ME, has so far seen four long haulers at his practice. “All of them meet the criteria for ME/CFS,” he said.

Despite years of research, there is no biomarker for ME/CFS, so blood tests are ineffective as a diagnostic tool. Rowe’s approach is to tease apart which symptoms may have identifiable causes and treatments, and address those.

One example: A 15-year-old boy Rowe was treating for ME/CFS was so sick that even sitting upright a few hours a day exhausted him and made schoolwork virtually impossible. The boy’s heart rate while lying down was 63; when he stood up it skyrocketed to 113. This effect is known as postural orthostatic tachycardia syndrome, or POTS.

Rowe knew from interviews with the boy’s mother that he had an extraordinary appetite for salt. So much so that he kept a shaker at his bedside and would regularly sprinkle salt on his hand and lick it off.

Rowe hypothesized that he was dealing with a sodium retention problem. To counter it, he prescribed the steroid fludrocortisone, which promotes sodium resorption in the kidneys. Three weeks later, the boy had recovered so dramatically he was helping a neighbor with a landscaping project, pushing rocks around in a wheelbarrow. “He was a different kid,” Rowe said.

Such a course of treatment would not be applicable in a typical case, Rowe said, “but it does emphasize the potential for patients to get a substantial improvement in their CFS symptoms if we address the orthostatic intolerance.”

ME/CFS Usually Misdiagnosed

Beginning in the 1980s, many doctors treating ME/CFS prescribed a combination of cognitive behavioral therapy and an exercise regimen based on a now discredited assertion that the illness had no biomedical origin. That approach proved ineffective — patients often got demonstrably worse after pushing beyond their physical limits. It also contributed to a belief within the medical establishment that ME/CFS was all in your head, a narrative that has largely been refuted.

“ME/CFS was never a mostly behavioral problem, although it has been cast as that,” Rowe said.

Answers have been slow to arrive, but attitudes about the illness are beginning to change. Advocates of patients point to a 2015 report by the Institute of Medicine that called ME/CFS “a serious, chronic, complex, systemic disease” and acknowledged that many doctors are poorly trained to identify and treat it. The CDC says as many as 90% of the estimated 1 million U.S. patients with ME/CFS may be undiagnosed or misdiagnosed.

The problem is exacerbated by a reluctance to provide health care coverage to patients whose illnesses aren’t easily diagnosed, said Joe Dumit, a medical anthropologist at the University of California-Davis.

“Making patients prove they are not just suffering, but suffering from a documented illness, saves money. So, I worry about the way in which covid long haulers will be treated as the numbers rise.” The best treatment in many cases may be rest or reduced workload, “which translates into some form of disability coverage,” he said.

But since long haulers typically sicken immediately after having had a testable viral infection, perhaps they won’t be disbelieved, Rowe said — after all, their illness “starts as a ‘real’ illness.’’

Long haulers may also help researchers better understand the onset of the illness because they are being studied as their symptoms emerge, while ME/CFS patients often aren’t seen until they’ve been ill for two or more years, he said.

“There’s no question that this legitimizes in many ways the experience of people with ME/CFS who have felt they weren’t believed,” DePaul’s Jason said.

In July, the nonprofit Solve ME/CFS launched an initiative aimed at understanding similarities between long haulers and patients with ME/CFS. Dubbed You+ME and underwritten by the National Institutes of Health, it includes an app that enables registrants to record their symptoms and their effects over time.

Such efforts may further diminish the tendency of doctors to ignore patients’ complaints of symptoms that seem to have no evident cause, said Lauren Nichols, 32, a long hauler with a long list of miseries — everything from severe gastrointestinal problems to shingles in her left eye.

“I was one of those people who falsely believed that if you can’t see the illness it’s psychosomatic,” said Nichols, who helps administer Body Politic, a support group for long-covid patients that has found common cause with the ME/CFS community.

“Now I’m living it,” she said. “If I have one message for doctors, it’s ‘Believe your patients.’”

Kaiser Health News is a national health policy news service. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.