For COVID-19 Long-Haulers, Few Answers, But Meditation and Peer Support Offer Some Relief
Brain fog. Shortness of breath. Fatigue that overwhelms after simply conversing with someone. These symptoms can linger for some COVID-19 patients – some experts estimate between 10 and 30 percent of them – preventing a return to normal long after the fever and infection have disappeared.
While researchers are still striving to understand why some patients experience these “long-haul” symptoms, two UC San Francisco clinicians from complimentary specialties have teamed up to create an integrative medicine skills program that can give such patients better tools to cope with the debilitating symptoms.
“I’ve never tried to develop a program for a condition that we know so little about,” said Juliet Morgan, MD, a neurologist and chief resident in psychiatry at the UCSF Weill Institute for Neurosciences. “We’re trying to stay as close to the evidence as possible to tailor treatment to this specific group.”
Morgan has partnered with palliative care physician Meghan Jobson, MD, PhD, a fellow in the School of Medicine, and the two have been combing studies about integrative approaches to other chronic conditions, as well as recent insights into COVID-19 symptoms, and bringing all the knowledge to bear on their effort.
“We looked at this population, and we said, ‘What does the literature tell us about low-cost and effective interventions that can work for symptoms of chronic conditions?’” said Jobson. Morgan adds, “What we found is significant evidence that mindfulness meditation produces physiological changes in the body that help manage stress, and that support groups reduce feelings of isolation.”
The clinicians added cognitive behavioral therapy to create a low-cost, low-risk program to help patients manage stress and anxiety. They completed the first run of the three-week program in December 2020, with a group of 10 patients.
Only two of the 10 enrolled had required brief hospitalization, one of them in the ICU for 24 hours, while the other eight experienced mild to moderate illness. Participants ranged in age from mid-30s to early 70s. All of them had been sick in March or April and had been incapacitated by symptoms for over eight months.
Grappling with Loss of Identity
Herman, a post-COVID patient in UCSF’s COVID-19 Neurorecovery Clinic and OPTIMAL Clinic, was accepted into the pilot program. He developed COVID-19 in March 2020 and is still struggling with fatigue, gastrointestinal issues, memory loss and shortness of breath.
“It was really amazing that suddenly I had people to talk to about this, people who were going through the same thing,” he said. “We could work through this illness together instead of being so isolated. It gave me something to look forward to.”
Herman’s experience mirrors that of most people with post-COVID effects, many of whom were young and healthy before they got sick, and now can’t work or conduct normal lives, said Morgan. The circumstances leave many patients grappling with a loss of identity.
“These are people who thought of themselves as quick-minded, in charge of their lives, and able to help others,” she said. “And now they have these debilitating symptoms and they don’t really know what’s happening to them or what they can do about it. It’s a huge change from who they used to be.”
Like many others in the first round of patients, Herman hadn’t previously used any of the integrative techniques – meditation, support group, or cognitive behavioral therapy – that he experienced in the group.
“I’ve always thought those kinds of things weren’t really for me, but I found them really helpful,” he said. “It gives you an idea of what’s possible. You develop a better outlook and realize that it’s not all doom and gloom out there.”
Since the group stopped officially meeting in December, over half of the group members have taken up some sort of mindfulness practice on their own, and that many say the practice has provided relief from symptoms.
Herman, who said his condition is slowly improving, has continued the practices he learned from the group, like writing a list of what he’s grateful for each day and remembering to just stop and take a breath. In addition, he said, it’s been validating just to have people acknowledge that what is happening to him is real.
That recognition may be one of the most important takeaways from the experience. “They feel like they finally have a base of people who believe them,” said Jobson. “We could tell in the first session that they’re just so thirsty for each other’s stories.”
Ideally, the researchers hope what they learn through their work will be a model for how others can apply mindfulness and integrative strategies to help people cope with other chronic conditions such as fibromyalgia and arthritis. “We believe that COVID-19 can demonstrate the importance of providing these skills that are so fundamental for living in such a busy, intense world,” said Jobson. “Our goal is to find ways to improve the quality of life for people with chronic symptoms. The responses we’ve had so far leave us hopeful.”
The physicians have another group underway, with plans for future groups over the next year. Interested patients should fill out the form on the group’s website to stay informed about future enrollment. https://osher.ucsf.edu/public-classes/integrative-medicine-group-covid-recovery