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For Many COVID-19 Survivors, Another Devastating Syndrome May Follow

Myalgic encephalomyelitis, or Chronic Fatigue Syndrome, is on the rise

By Barbra Williams Cosentino

Lisa Shanks, 48, was a healthy, energetic cardio-dance and fitness instructor before March 2020.

COVID-19 survivors, Next Avenue, Woman sitting at table looking tired and sick
Credit: Adobe

But three weeks after coming down with COVID-19, she felt worse instead of better, coughing nonstop and feeling as if she was wearing a tight corset preventing her from taking deep breaths. She was weak, dizzy and had blurred vision.

"I feel like an alien has taken over my body."

A COVID-19 "long hauler," Shanks, of Vacaville, Calif., felt disconnected from herself and from the world. Her heart rate soared if she did something as simple as get out of bed. She was afraid she would die.

Though never hospitalized due to the coronavirus, by four months into the illness, Shanks lost 20 pounds and had muscle wasting and sagging skin that she says "looked like a deflated balloon."

'A Body Nothing Like the One I Had Before'

Now, nine months after Shanks was first laid flat, she says, "I feel like an alien has taken over my body. I'm like a car that has run out of gas, stuck inside this body that is nothing like the one I had before."

Recently, after pulmonary function tests revealed that her lungs were only working at 50% capacity, Shanks was diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, often referred to as Chronic Fatigue Syndrome.

Patient advocates and health care professionals, including the Centers for Disease Control and Prevention (CDC), now prefer the term ME/CFS, since Chronic Fatigue Syndrome has been stigmatized.

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For many years, CFS was believed to be primarily psychological, even when a number of symptoms were clearly present, and patients were told to seek counseling. Even today, family, friends and even medical professionals may suggest that its symptoms are "all in your head," a phenomenon called gaslighting that can induce self-doubt, which is what Shanks and others have been experiencing.   

In reality, ME/CFS is a debilitating, chronic disease that may affect as many as 2.5 million Americans. The CDC says ME/CFS is most common in people between age 40 and 60, women more often than men. Older adults with co-morbidities may experience more troubling symptoms.

The disorder can affect all parts of the body including the respiratory, cardiovascular and autonomic nervous systems.

It includes: an impaired ability to function at home or at work, lasting for more than six months, accompanied by profound fatigue that doesn't improve with rest; post-exertional malaise; unrefreshing sleep and either cognitive impairment or what's known as postural orthostatic tachycardia syndrome or POTS (changes to blood pressure, heart rate and the flight-or-fight response during intense stress) or possibly both of those.

Other symptoms may include joint or muscle pain, hair loss, gastrointestinal issues and flu-like symptoms.

The disorder is often accompanied by depression or anxiety.

It can be so debilitating that 25% of patients are bed-bound or unable to leave home.

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Even showering or preparing a meal may lead to exhaustion that lasts for days or weeks.

COVID-19 and ME/CFS

"Given the astounding numbers of people already experiencing prolonged post-COVID symptoms, even if only five percent go on to have chronic symptoms that might ultimately lead to a diagnosis of ME/CFS, this will still have an enormous impact upon many individuals, their families and their care providers," said Dr. Brayden Yellman, of the Bateman Horne Center of Excellence, a nonprofit research and treatment center for ME/CFS in Salt Lake City.

Indeed, many COVID-19 patients, including those who weren't that ill with the virus itself, are now experiencing debilitating symptoms of ME/CFS.

How a viral illness like COVID-19 turns into a chronic debilitating condition is not fully understood.

This confirms the July 2020 speculations of Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health, that many would develop a post-viral illness eerily similar to ME/CFS.

The Open Medicine Foundation, dedicated to diagnosing, treating and preventing ME/CFS, says 11% to 50% of its cases are sparked by viral infections such as SARS, (severe acute respiratory syndrome), Epstein-Barr or West Nile Virus.

COVID-19 is a SARS-CoV-2 virus similar to the one responsible for the SARS CoV-1 global outbreak of 2003 and medical experts are concerned that we may see many new cases of ME/CFS in coming months.

How a viral illness like COVID-19 turns into a chronic debilitating condition is not fully understood.

One hypothesis is that the immune system produces abundant numbers of inflammatory markers called cytokines during the illness and becomes stuck in an overactive state, pouring a persistent shower of these substances into the bloodstream. Even if the virus is eradicated, this cytokine storm leads to an exaggerated autoimmune reaction in which antibodies attack the body, causing some of the ME/CFS symptoms.

"Many believe that the development of ME/CFS may represent a disturbance of the process in which 'the sickness response' is turned off after healing from an infection or injury," said Yellman. "If this process never resolves, it can lead to chronic changes and impairments in metabolic, immune and neurologic pathways."

What Can Help People With the Disorder

Graded exercise, the kind where you push yourself to increase endurance, has been found to be detrimental to people with ME/CFS.

"Individuals with the disorder need to learn pacing, in which they are taught to respect their own triggers and limitations." says Adriane Tillman, editor of #MEAction, an international organization of people with ME, caregivers and family members. "This means stopping and resting at the first signs of overexertion. Pacing helps patients to avoid a cycle of push-and-crash which can worsen symptoms significantly."

Dr. Brayden Yellman with the Bateman Horne Center of Excellence, COVID-19 aurvivors
Dr. Brayden Yellman

Currently, there are no lab tests or imaging studies for ME/CFS, which makes it difficult to diagnose.

Many people who weren't able to be tested for COVID-19 in the early days of the pandemic often have difficulty getting medical confirmation that they had it and that their long-hauler symptoms may now be reflective of a post-viral ME/CFS. Without a formal diagnosis, it can be difficult to receive proper medical care or disability benefits.

While there are no accepted treatments, some people with the disorder get better over time. Pacing, adequate rest, restorative sleep and a healthy diet are important. Some medications can help lessen symptoms, too.

If you think you have ME/CFS, look for a physician who is familiar and sympathetic to people with it.

Experts say the COVID-19 crisis presents an opportunity to investigate why some individuals develop ME/CFS while others recover unscathed after a viral illness and to potentially develop prevention strategies and treatments.

Congress just approved $1.15 billion in funding to the National Institutes of Health for research on long-haul COVID-19. And The Open Medicine Foundation and the Solve ME/CFS initiative are in the midst of studies of post-COVID-19 patients, to better understand the etiology and course of ME/CFS.

barbra consentino, writer
Barbra Williams Cosentino RN, LCSW, is a psychotherapist in Queens, N.Y., and a freelance writer whose essays and articles on health, parenting and mental health have appeared in the New York Times, Medscape, BabyCenter and many other national and online publications. Read More
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