SAN FRANCISCO (KPIX) — Around California and the Bay Area you’ll find them: members of a club that no one wants to join. These are patients who experience lingering misery after they no longer test positive for SARS-CoV-2. They’re known as the long-haulers.
“About 10 percent of patients who’ve had an initial COVID-19 infection will go on to not fully recover,” said UCSF neurologist Dr. Juliet Morgan.
“It puzzled a lot of us,” said Dr. Meghan Jobson, palliative care Fellow at UCSF.
KPIX met two long-haulers: retired former banker Bruce Wheeler and Carla, who is a first responder. Carla asked us not to use her last name.
“It felt very lonely and, after a while, you wonder: is this in my head?” Wheeler said.
When Carla first noticed the symptoms of her long-haul syndrome, she was worried.
“I don’t think I’m going to be OK,” she remembered thinking.
Both were infected last year and felt awful. The infections went away but their brush with the novel coronavirus was far from over. For months, they continue to suffer baffling, debilitating health conditions.
“I know what it’s like to be really tired but this was different,” explained Carla.
Carla used to bicycle hundreds of miles and run marathons. Today, she feels extraordinary fatigue, shortness of breath and a terrible, systemic pain.
“You know when you cut yourself and you put alcohol in there and you know it burns?” she asked. “It was similar to that but all over.”
Wheeler was an active hiker but he now reports fatigue, persistent shortness of breath, nausea, brain fog and destabilizing headaches.
“Many days I get up at 8 o’clock in the morning and, at 10 o’clock, I’m back in bed because my headache is pounding away,” he said.
The symptoms for long-haul syndrome vary but can also include a loss of the sense of smell and taste, as well as hair loss.
There’s also a report of patients developing serious inflammatory conditions. Preliminary data indicate that some asymptomatic college athletes developed an inflammatory heart condition.
What’s frustrating is that the syndrome is not well understood. Family, friends, co-workers and colleague often express disbelief at the constellation of symptoms, questioning if the patient is actually sick. Often, patients are mistakenly prescribed anti-anxiety medicine, even anti-depressants.
“There just weren’t answers,” Wheeler said.
“I felt hopeless,” said Carla.
Their situation reached the attention of Dr. Morgan and Dr. Jobson. They both specialize in chronic conditions that impact quality of life and they have expertise in integrative medicine.
“What we had been hearing from multiple survivors of COVID-19 is that they didn’t feel heard,“ explained Dr. Jobson.
The cause for the syndrome remains unclear although it may involve an overreactive immune or inflammatory response. And, while older people appear more likely to get it, young people are not immune.
“We will see plenty of very young patients in their twenties and thirties who have this COVID long-haul syndrome who continue to suffer,” Dr. Morgan said.
The doctors established an online COVID support group: the first of its kind in the nation. Meetings are packed.
“There is strength in survivorship,” explained Dr. Jobson.
During group sessions, patients share their stories. The doctors answer questions, address fringe treatments and provide expertise in how to manage symptoms.
“Shortness of breath, the fatigue … we know a lot of the data and literature surrounding these things,” Dr. Jobson said.
Instruction is given in ways to relax such as mindfulness and meditation.
“Mindfulness is actually pretty powerful and potent medicine. We know in studies that it can reduce markers of stress like cortisol. It can reduce inflammatory markers like IL-6.” Dr. Morgan explained.
Bruce Wheeler and Carla told KPIX the online support and help has already provided a great benefit.
“Literally in the last two weeks, I began to see improvement on the headache front,” Wheeler said.
“Instead of doing it every once in a while, now I do it every day, every night,” Carla added.
They also learn from each other what strategies work, what doesn’t and they’ve been inspired by others.
“I am really impressed by Carla’s strength and that she saw the silver lining even when it was a really bad, bad day,” Bruce commented.
Carla did lose her hair. When Bruce saw her online, Carla recounted how he said just the right thing.
“He took it upon himself to say “You know what Carla, it actually looks pretty good on you,“ she smiled.
As for the doctors, they’ve learned quite a lot from their patients: curiosity, resilience, respect and tenacity.
“They’re showing us what it looks like to ask for help,” Dr. Morgan said.
“We encourage other people in other areas of the country to start support groups,” Dr. Jobson added.
There are other extraordinary COVID long-haul syndrome support groups, such as Survivor Corps and Body Politic.
The UCSF group was so successful and helpful to the long-haulers involved, they asked Dr. Jobson and Dr. Morgan to extend it. Now a new one is set to begin this spring. There is no cost to patients.