The suicide last May of Long COVID sufferer Heidi Ferrer rocked the COVID-19 world, lending a face to the debated diagnosis.
A TV writer for Dawson's Creek and Wasteland, Ferrer had been battling extended COVID symptoms for nearly a year when she called it quits. She foreshadowed her death when she posted on her social media blog: "In my darkest moments, I told my husband that if I didn't get better, I did not want to live like this. I wasn't suicidal, I just couldn't see any quality of life, long term, and there was no end in sight."
Demographically, Ferrer was smack in the middle of Long COVID sufferers. Female, white, age 50, and income of more than $85,000 annually.
Defining Long COVID
An estimated 30 percent of COVID-19 patients have Long COVID symptoms, with middle-aged white females representing the lion's share. But what exactly are those symptoms? Long COVID has been used as an umbrella term to include both physical and mental health consequences, ranging from prolonged illness to hospitalization.
Yet controversy has swirled concerning the laundry list of debilitating ongoing symptoms, such as muscle pain, unrelenting fatigue, breathlessness, anxiety, depression and brain fog. For example, fatigue and brain fog are comprised of more than 200 symptoms. Brain fog has recently been added to the Collins Dictionary as an "usually temporary inability to concentrate and think clearly," but the term also covers neuropsychiatric problems including migraines, high anxiety, fatigue, insomnia and even autism.
Other common issues include heart palpitations, loss or smell or taste, and joint pain.
"COVID took my hair and after two years, it's still not back to normal," said 51 year-old Tami Lairamore of Littleton, Colorado, who contracted COVID-19 in November 2020 and again in July 2021 and has been sporting hairpieces. "Now I need a hip replacement, which I'm not sure is related to the inflammation issues I've had since COVID round two. I didn't have a problem before. I keep wondering when these symptoms will disappear or at least become more manageable."
The CDC has limited its symptom list of Long COVID to 13 primary indications that Pennsylvania attorney Michael Fumento called "worthless in distinguishing Long COVID from other illnesses."
National Institute of Allergy and Infectious Diseases Director Anthony Fauci, MD declared at a December 2020 symposium that Long COVID is "quite real and quite expensive." He later called Long COVID symptoms "highly suggestive" of myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS).
Adding to the Confusion
Long COVID symptoms sometimes mimic autoimmune diseases, which are more prevalent in women ages 40 to 60. For instance, conditions such as rheumatoid arthritis, Hashimoto's (thyroid) disease and lupus are two to three times more common in middle-aged women than men.
"It's possible, that for such women, the body's immune system turns on to fight COVID, but then can't turn back off and so remains on the attack, creating other problems in different organs and parts of the body, similar to an autoimmune response," said Sharon Stills, NMD, a naturopathic medical doctor specializing in menopausal women. "This means that lurking behind the scenes in all this could be inflammation."
Limited Research So Far
With the pandemic occurring barely more than two years ago, it's little wonder research is lacking.
In two British studies last year, there's debate whether Long COVID sufferers actually had COVID. The largest study as of September 2021 was published last July by researchers at University College London, which acknowledged that 27 percent of Long COVID sufferers had evidence of exposure to the SARS-COV-2 virus, whether antigen or antibody. A smaller British study, conducted in August, determined only 17.2 percent were test-confirmed positive. The greatest complaint: sufferers felt terrible, with symptoms mimicking COVID.
Former NIH Director Francis Collins recognized Long COVID by having his agency assign the name "Post-acute Sequelae of COVID-19 (PASC)." Soon after, Congress approved $1.15 billion in funding over four years to support research on PASC. Parenthetically, the average NIH grant is $500,000, with an application success rate of roughly 20 percent.
The Depressive Component
"You'll get no NIH funds hypothesizing that Long COVID is essentially depression and that therefore, it needs to be treated like depression," Fumento wrote. "Instead, you'll propound on how it's a mystery disease with as yet no successful therapies."
The New England Journal of Medicine perhaps got ahead of the controversy by saying "some commentators have characterized it as a mental illness which augurs poorly for many people with Long COVID."
Regardless, Ferrer's demise took away the "just snap out of it!" formula that some misinformed practitioners have used with depressives. The federal government estimates that nearly two-thirds of Americans who commit suicide were primarily depressed. Now, depression among Long COVID patients who suffer from persistent fatigue, mental and physical slowing down, and difficulty concentrating is a pathology that has been described as being as real cancer and heart disease.
President Biden Rallies Surge in Long COVID Research
On April 5th, President Biden continued a national research push on Long COVID, instructing federal agencies to support patients dealing with the enigmatic condition. The White House also acknowledged Long COVID as a disability.
"The emphasis on treatment for Long COVID and recognizing that this could be a source of ongoing disability are long overdue," said Lena Wen, MD, a former Baltimore health commissioner.
The Department of Health and Human Services has been tasked with building on the $1.15 billion RECOVER (Researching COVID to Enhance Recovery) Initiative, already ongoing at the National Institutes of Health. The study calls for 40,000 participants with and without Long COVID symptoms.
In particular, Biden targeted federal agencies to support patients and physicians by providing science-based best practices for treating Long COVID, preserving access to insurance coverage, and protecting the rights of workers dealing with Long COVID, particularly concerning mental health.
Vanderbilt Team Helps Long COVID Sufferers Battle Cognitive Issues
The Adult Post-Acute COVID Clinic at Vanderbilt University Medical Center (VUMC) recently unveiled new studies determining the cause of symptoms and the value of treatments such as physical therapy and cognitive training for Long COVID patients.
VUMC is also seeking answers outside mainstream medicine. For example, the Nashville-based center is participating in a study to determine whether a video game development for children with attention deficit disorder by Boston-based Akili Interactive may also improve cognitive functioning in post-acute COVID patients.
In March, nearly 30 new patients entered the video game study from support groups, "with some patients literally crying when they learn that they're eligible to participate," said James Jackson, PsyD, research professor of medicine and lead psychologist for the Critical Illness, Brain Dysfunction and Survivorship (CIBS) Center at VUMC.
"We're clear about it not being a panacea," he said. "We don't know if it works. That's why we're studying it. But the emotionality the patients have shown has been a reminder for us of how debilitated they really are."
Concurrently, several colleagues from the CIBS Center are leading online peer support groups for Long COVID sufferers and their families.
"We are increasingly getting referrals from physicians around the country who know about the work we're doing and send their patients to us," Jackson said.
A CIBS Center patient, 38 year-old Jane Storie of Hermitage, TN, contracted COVID-19 in October 2020 and continues to be plagued by debilitating symptoms.
"It's a sobering reality," Storie said. "As a society, we expect doctors to know everything, but realize that nobody knows much, and everybody's doing the best they can to figure it out."