It’s been four years since Jennifer Hooper, 56, has been able to work or drive. On bad days, she can’t make herself dinner.
Her career as a senior marketing director with a software startup came to a shuddering halt in July of 2020, when she fell sick and tested positive for COVID. Her initial fever and cough contorted into crushing fatigue, brain fog, blurred vision, dizziness, chest pain and more — and the debilitating symptoms never left.
Largely confined to her home in Portola Valley, Hooper has struggled to find doctors who take her symptoms seriously.
“I had one doctor look at me in a way that said, ‘Yeah, right,’” she said in a hoarse, gravelly voice.
That leaves patients scrambling to find doctors who are open-minded and confident enough to experiment with different medications. Such physicians are in short supply: According to a 2023 survey by the de Beaumont Foundation, a nonprofit that focuses on public health, only seven percent of doctors are “very confident” about diagnosing long COVID, and just four percent have the same confidence in their ability to treat the condition.
Research into long COVID is still at an early stage. One major difficulty is that it probably isn’t one condition but a constellation of overlapping consequences of infection with the coronavirus. These may include the virus persisting in parts of the body, long-lasting disruption of the immune system, clotting in microscopic blood vessels, or changes to the bacteria and viruses that naturally inhabit our bodies. Long COVID is thought to be related to a similarly enigmatic condition called ME/CFS, a chronic fatigue syndrome, which can be triggered by infections with other viruses.
In mid-October of last year, Hooper was scheduled for an appointment at the Stanford Post-Acute COVID-19 Syndrome Clinic, or PACS — one of the few clinics in the Bay Area where doctors from multiple specialties who are familiar with the needs of COVID long-haulers will work with them to manage their symptoms. But its wait list is so long that her doctor will not be able to see her until September.
“When it’s taking you a whole year just to get an appointment, that just shows that the demand is much stronger than there is capacity for,” Hooper said, trailing off as brain fog cluttered her thoughts. She resumed a few minutes later. “It is essential that we get good doctors who listen and don’t try to write you off or gaslight you into believing it’s all in your head.”
Dr. Hector Bonilla, co-director of the Stanford PACS clinic, sees 15 to 20 long COVID patients a week. He said the clinic has been hiring more doctors and is working on cutting wait times. But hiring remains a challenge, he said, because too few providers want to focus on long COVID.
“Either they lack knowledge of long COVID, or they feel these patients are hypochondriacs — people with health anxiety with numerous, complicated complaints,” Bonilla said.
Charlie McCone, 35, used to work in marketing, communications and advocacy at a nonprofit in San Francisco. Before he contracted COVID in the pandemic’s first wave in March 2020, he was cycling 10 miles a day, on average. He now needs to rest after just half an hour listening to music or ten minutes of reading — both former passions of his.
McCone’s most debilitating symptom was shortness of breath.
“I felt like a life vest was tightly bound around my chest, choking me and preventing me from inhaling a full, proper breath, even when lying down,” he said.
Researching his condition, he discovered that microscopic clots in his lungs might be to blame, and saw accounts from other patients suggesting that blood-thinning drugs could help.
Finding a doctor who would try this approach was hard — he approached more than 30 who were unwilling to help, he said. After some experimentation, McCone is now on Plavix, which prevents blood clots from forming. He is now housebound, rather than bedbound.
With such arduous battles in accessing health care, some long COVID patients have given up on the medical profession entirely.
Paige Morrisey, 27, was working at a Trader Joe’s in San Francisco when she tested positive for COVID in December 2020. She went from someone who loved dancing and running to someone who got winded just after walking one block.
These symptoms were bad enough, but her neurological symptoms — including anxiety, depression, short-term memory loss, panic attacks and confusion — were worse. Morrisey was given powerful antipsychotic drugs and felt that one neurologist was more interested in her as a research subject than in helping her as a patient. “The only time he responded to my emails was to ask for consent to use my results for his research,” she said.
After six months of such discouraging experiences, Morrisey turned to an online group led by a woman who said she had recovered from her own chronic illness by changing her nutrition and lifestyle and adopting meditation and mindfulness.
McCone’s and Morrisey’s experiences highlight a fundamental tension between frustrated patients and medical professionals, who are anxious about the risks of trying drugs that have not been shown to work in rigorous clinical trials.
“We cannot put people’s lives in jeopardy, we can only prescribe medications after it has gone through rigorous testing,” said Bonilla.
But Bonilla said that he struggles to convince patients with chronic illnesses to participate in clinical trials. “We cannot manufacture data, we need people to participate in trials,” he said. “But most patients avoid it.”
Doctors who specialize in long COVID and patient advocates agree that there’s an urgent need for more clinics that have the broad expertise to help sufferers. Stanford’s PACS clinic is one of just three in the Bay Area that specializes in long COVID.
Even more important is education for general practitioners on how to help long COVID patients.
“Medical societies need to reach out for help in educating their providers on chronic illnesses like long COVID and ME/CFS,” said Jaime Seltzer, a researcher at Stanford Medicine — which is not affiliated with the PACS clinic — and scientific director for #MEAction, a nonprofit organization advocating for chronic illnesses.
“There are not enough specialists and clinics that treat such illnesses,” Seltzer said, “Even if there were, we need our general practitioners and first line of doctors to be trained in correctly diagnosing chronic illnesses before redirecting them to specialists.”
Given the sheer number of patients seeking help, Bonilla believes doctors need to make a greater effort to educate themselves about long COVID. “If providers took even two hours out of their week to study this condition, it would be a huge help in fighting the sheer lack of knowledge there is currently,” he said.
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