Seeking Answers to Long COVID
Long COVID affects tens of millions of people worldwide, yet it remains a mystery.
By Linda Rath | Reviewed Nov. 17, 2023
The COVID-19 public health emergency officially ended on May 11, 2023, but little has changed for people living with long COVID. Many continue to struggle with ongoing, new or recurring effects of the virus months or even years after they were first infected. And according to a new British study of more than 3,700 self-described “long haulers,” many have worse fatigue and quality of life than patients with late-stage lung cancer or Parkinson’s disease, yet they receive far less attention or support. Mounting evidence also suggests that they are at greater risk of serious non-COVID conditions like heart disease, stroke, dementia and diabetes, even if their initial COVID symptoms were mild.
What is long COVID?
Definitions of long COVID are as diverse as the 200 or more symptoms associated with it. The National Institutes of Health (NIH) identified the 12 most common symptoms, though not necessarily the most severe or debilitating ones. These symptoms last or develop three months or more after a bout of COVID-19 and have no other explanation. They include:
- Postexertional malaise (symptoms that get worse after physical or mental exertion)
- Brain fog
- Gastrointestinal (GI) symptoms
- Heart palpitations
- Change in sexual desire or ability to have sex
- Loss of or change in smell or taste
- Chronic cough
- Chest pain
- Abnormal movements
Critics note that this way of looking at long COVID puts people who have lost their sex drive or sense of taste in the same category as those who are too debilitated to work, care for their children or get out of bed.
What causes long COVID?
Experts think long COVID may be several different diseases with overlapping symptoms. Some of the leading causes include:
- The presence of autoantibodies, which are antibodies against your own tissue. Canadian researchers and others have identified specific autoantibodies that stick around for at least a year in some COVID-19 patients. The autoantibodies are associated with core long COVID symptoms, like fatigue, trouble breathing and cough.
- The presence of the coronavirus spike protein in different parts of the body. Preprint studies published at the end of May 2023 found the spike protein in the brain tissue of deceased long COVID patients.
- Reactivation of Epstein-Barr, the virus that causes mono, and other viruses that lie dormant in the the body, sometimes for years.
- Damage to the autonomic nervous system, which controls breathing, digestion and heart rate.
- Harm from ventilators and other COVID-19 treatments.
- In rare cases, harm from a coronavirus vaccine, dubbed Long Vax.
Does having arthritis make long COVID more likely?
That’s not entirely clear, but evidence suggests that people with arthritis are at higher risk of long COVID. It also suggests that the relationship between arthritis and COVID-19 is a two-way street.
It’s long been known that arthritis can develop after some viral infections. Now, studies show that autoimmune and inflammatory arthritis is not uncommon as a complication of coronavirus infection – in part because they share similar inflammatory pathways. The inflammatory protein interleukin (IL)-6 plays an important role in both diseases, for example.
Conversely, studies suggest that people with rheumatoid arthritis (RA) may be particularly susceptible to coronavirus infection and long COVID because their immune system is already in an inflamed and dysregulated state.
Researchers recently presented one of the first studies looking at the prevalence of long COVID in people with an autoimmune rheumatic disease like rheumatoid arthritis and a non-rheumatic autoimmune disease like ulcerative colitis. They found that patients who had a rheumatic autoimmune disease were twice as likely to have long COVID compared to healthy controls — 10.8% vs. 5.3%. The number of people who have long COVID and a non-rheumatic autoimmune disease was also higher (7.3%), but lower than in autoimmune arthritis.
In a Canadian survey of 170 people with arthritis, many reported worsening symptoms after COVID-19 infection. About half said they experienced more fatigue and 42% complained of more breathlessness when climbing stairs. Close to 40% reported moderately or severely increased pain. Fewer than 20% of respondents graded their pre-COVID status as poor, but that percentage jumped to 50% post-COVID.
Similarly, a survey by the Centers for Disease Control and Prevention (CDC) in the U.S. found that more than a quarter of people with long COVID — but not necessarily arthritis — reported severe limitations on their activity.
Other risk factors
Most long haulers are not frail older adults, but previously healthy 40- and 50-year-olds.
David Putrino, a neuroscientist, physical therapist and director of Rehabilitation Innovation at Mt. Sinai Health System in New York City, has treated thousands of long haulers. He says many of his patients were healthy athletic people in their 40s who had a mild initial infection. Yale University immunobiologist Akiko Iwasaki, who was recently awarded nearly $3 million to study long COVID and other post-viral diseases, also says that many long haulers are former athletes.
Studies have also found increased risks for people who:
- Get COVID more than once
- Have diabetes
- Are overweight or obese
- Are economically disadvantaged
- Are Black or Hispanic (they’re also less likely to be diagnosed)
- Are trans or bisexual
Understanding who gets long COVID and why would go a long way toward helping to prevent and treat it. Research on similar post-viral illnesses, such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and postural orthostatic tachycardia syndrome (POTS) provides some clues. For example, symptoms of ME/CFS and long COVID overlap and may potentially involve similar treatments. POTS, which causes an abnormally fast heart rate and dizziness on standing, is a type of dysautonomia, a disorder of the autonomic nervous system that affects a majority of long haulers.
No universal treatment
Just as there is no single cause of long COVID, there is almost certainly no treatment that benefits everyone. Researchers are investigating everything from anti-inflammatories, the diabetes drug metformin and low-dose naltrexone — an addiction drug that in small doses can reduce immune and neurologic inflammation — to physical rehab, breathwork and Chinese herbs.
After a long delay, the National Institutes of Health (NIH) has started enrolling patients in clinical trials to test long COVID treatments. The first trial, conducted by Duke University, is looking at the antiviral drug Paxlovid. A previous study at Stanford of Paxlovid was stopped early because an interim analysis showed little benefit.
Meanwhile, Putrino and colleagues have developed a program that aims to correct a malfunctioning autonomic nervous system or dysautonomia. This approach is advocated by many long haulers, who say their energy systems need a total reboot.
Putrino couldn’t use the traditional treatment for dysautonomia — a graduated exercise program — because many Mt. Sinai patients (some of them former marathoners) were too debilitated to do it.
According to a JAMA Network Open study, long haulers don’t respond to exercise the way healthy people do. Less oxygen reaches their muscles and their heart rates don’t ramp up to meet extra demands. Experts speculate that long COVID patients develop changes in their muscles and blood vessels that go well beyond the deconditioning that typically occurs with illness and bedrest.
Putrino devised a minimalist exercise regimen that takes these changes into account and avoids post-exertional flares. In collaboration with Stasis, a company that specializes in breathwork, he incorporated rehabilitative breathing into the program. After three months, most patients feel better and may resume something like normal exercise.
Clinic pros and cons
Most post-COVID clinics are affiliated with academic medical centers in major cities and have long wait lists. And because there is no validated treatment for long COVID and no long-term data on how well various COVID clinics do, vetting them can be next to impossible. Some patients have had disappointing experiences at prestigious hospitals. Still, for very sick people, a specialty multi-disciplinary clinic may be life-changing.
Putrino has some suggestions for long haulers who are going it alone or waiting for a clinic opening:
- Pay attention to triggers, including physical activity, fluctuating blood pressure and weather. Notice if heat and humidity make symptoms worse.
- It’s important to be active, but only within your comfort zone, which at first may be extremely small. Compression stockings can help stabilize blood pressure.
- Plan small, easily digested meals; eating a lot of heavy food at once is likely to cause an autonomic episode.
- Practice breathwork. Many people develop abnormal breathing patterns due to damage from COVID or the ventilators sometimes used to treat it. (Evidence-based breathing strategies are available for free on the Stasis website.) You can also find recommendations for certified breathwork coaches.
- Look for support. There are many excellent long COVID support groups, such as Survivor Corps.
- Many insurers won’t cover tests or treatments for long COVID. Out-of-pocket costs may run as much as $9,000 a year.
- Long haulers with debilitating symptoms may be eligible for disability payments under the Americans with Disabilities Act (ADA) and other federal laws. The ADA defines disability as a physical or mental impairment that “substantially limits one or more major life activities.” Nevertheless, qualifying for disability benefits under almost any circumstances can be a long and frustrating process, especially in certain states, and disabled long COVID patients are often denied payment. Contact the Social Security Administration.
- If you lost your job or were otherwise discriminated against due to having long COVID, contact the U.S. Equal Employment Opportunity Commission.
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