Clinicians and people with chronic COVID gathered in Santa Barbara, California in late March for a forum on clinical care advances in chronic conditions related to the infection.
Clinicians, researchers, and people with chronic COVID gathered in Santa Barbara, California in late March for the Forum on Infection-Associated Chronic Conditions and Diseases (IACCIs).
The free hybrid event that drew hundreds, the “California Long COVID + IACCI Clinical Practice Forum,” was hosted by the nonprofit Chesley Initiative, which offers clinical practice events for complex chronic conditions. The forum, which was a continuing medical education (CME) course, included a keynote address by David Putrino, director of the Cohen Center for Recovery from Complex Chronic Illness (CoRE) at Sinai, New York City.
A panel of providers from the leading chronic COVID clinics in California also took center stage. While the forum primarily focused on treating the disease in adults, the patient panel revealed slow progress in pediatric chronic COVID care. The forum does not require any airborne precautions.
CME credits are essential for health care professionals to maintain their medical licenses and improve their clinical care by expanding their knowledge of medical advances. Each state in the United States has different requirements for CMEs; California, for example, requires 50 hours every two years.
“The increasing prevalence of chronic covid and IACCIs requires that all primary care physicians in the United States receive basic evidence-based training on how to diagnose and treat these conditions – just as they do with cancer, diabetes and other chronic diseases,” said Chesley Humesfield, director of the Chesley Initiative. Times of illness. “Early diagnosis and evidence-based clinical care can make a real difference in people’s lives and help save lives.”
During the keynote, Putrino shared his clinic’s practices when treating IACCIs, also called IACCs, which are also featured in CoRE’s recent infection-related chronic disease provider guidelines. Guidelines, such as the Bateman Horne Center’s Clinical Care Guidelines, are the leading resource for clinicians in the treatment of complex chronic diseases, although they are not peer-reviewed or based on formal consensus processes.
The 168-page CoRE guide is listed as a resource on the Department of Health and Human Services’, but delayed, long-standing COVID website. During his lecture, Putrino lamented that many study and skip CoRE guidance due to the limitations of CME-accredited courses.
In the future, CoRE plans to “pair CME-approved presentations with non-CME presentations so that we can be a little more open about discussing practice guidelines and clinical pearls for providers that are not yet part of official guidelines or [Food and Drug Administration] Approved,” Poterino wrote Times of illness.
He explained that as a disease that affects millions of Americans, long-term COVID requires the understanding of primary care providers, rather than being treated as a clinical area of special interest for only a few providers. “A coordinated education strategy is needed so that we can treat prolonged COVID like a national emergency,” Petrino wrote.
“Treat the Drivers, Not the Signs”
Putrino’s recommendations recommenders use the National Academies of Sciences, Engineering and Medicine’s definition of prolonged COVID, which defines prolonged COVID as any health issue that persists for more than three months after a SARS-CoV-2 infection.
The comprehensive definition, published in 2024, offers guidance on how to recognize the disease and says that chronic COVID diagnosis does not require biomarkers. Nor are the definitions from the Centers for Disease Control and Prevention or the World Health Organization. He also noted that many people with chronic COVID meet diagnostic criteria for other IACCs, such as dystonia.
During his talk, Putrino went over ten potential “drivers” of IACCs, including pathogen persistence, pathogen reactivation, mitochondrial dysfunction, neurodegenerative disorders, dysautonomia, mast cell activation, and more. Instead of treating the symptoms of IACCs — which, in the case of chronic COVID, include more than 200 — he urged providers to treat the “drivers” of symptoms.
Petrino told doctors to treat each case of Long’s COVID individually, because the disease is so complex. “When you’ve seen a chronic COVID patient, you’ve seen a chronic COVID patient,” he said. “We need providers to understand that this is not a silver lining.”
As many people with these illnesses seek care from medical providers, Petrino emphasized a strict “do no harm” approach. He recommended that doctors should wear masks when treating people with IACCs and implement clean air and far UVC in their clinics to better protect against airborne diseases that can further disable people with IACCs. He also said that he would never “mentalize biological illness.”
Ann Forbes, a retired public school teacher with chronic Covid, actually attended the forum. wrote to her Times of illness“Perhaps the statement that meant the most to me was when David Putrino said that people with chronic conditions show good coping skills. It confirms that being chronically ill is hard and changing behavior to cope is a recognized achievement.”
Moving forward, Putrino said he hopes to see more complex and combination therapies tested for long-term COVID, citing the development of similar therapies in oncology.
When you’ve seen a chronic COVID patient, you’ve seen a chronic COVID patient. … We need providers to understand that this is not a silver lining.
David Putrino, speaking at the California Forum
“Clinical pearls” and lived experience
Later, the panel included Drs. Linda Gang, co-director of the Stanford Long-Covid Collaboration, Caitlin McAuley, director of Keck Medicine at the University of Southern California’s Covid-Recovery Clinic, and Nisha Viswanathan, director of the University of California, Los Angeles’ Long-Covid Program.
Like Putrino, Gang hopes to see a more effective phenotype for Long’s COVID and IACC research, which will sort people with the disease into different groups to help advance clinical trials and care.
The panel unanimously agreed that telehealth is vital to treating people with chronic COVID and other IACCs in their clinical practice. “[It has been] “I can’t even imagine how many patients will never come to our clinic, never engage in care, because they can’t physically get there,” McAuley said. They also acknowledged that patient navigators are essential in managing the long COVID administrative burden.
I can’t even imagine how many patients will never come to our clinic, never engage in care, because they can’t physically get there.
Caitlin McAuley, speaking at the California Forum
Viswanathan said that in her experience she has found that the heart failure drug ivabradine is helpful for some people with chronic COVID. She has had success in getting insurance coverage when patients are diagnosed with inappropriate sinus tachycardia (IST), a type of dysautonomia.
While there are currently no FDA-approved treatments for chronic COVID, Viswanathan urged providers to consider prescribing off-label medications, as some may help improve quality of life. “Learning to do no harm should also include the edge of medicine,” she said.
On top of the CoRE and Bateman Horne Center guidelines, patient-led research collaborative and telehealth clinic RTHM recently published a guide to chronic COVID treatment for people with the disease with potential off-label medications, supplements and lifestyle interventions to discuss with providers who may not be aware of chronic COVID.
While care is growing for some adults with chronic COVID, the patient panel showed a stark contrast to the reality of the more than 6 million children with the disease in the United States.
Three patients and a caregiver, Royal Hanson, vice president of privacy, safety, and security engineering at Google, joined the panel. He talked about his 10-year-old son’s experience with severe chronic COVID and myelgic encephalomyelitis (ME). Illness left Hanson’s son bedridden and unable to attend school. Previously, he was active and enjoyed many sports.
“At least, everybody forgot about him,” said Hansen, who is actually joining from Utah. “It’s a bit of a reality,” he said of the family’s isolation due to his son’s illness. Hanson described the considerable difficulties for her family in finding care for her son. While they moved from California to Utah to access better care, he said his son is “basically in the same place” and that some of the treatments they’ve tried have made him worse.
Guidelines for chronic COVID in children have moved at a glacial pace, and there are only a few pediatric clinical trials. RECOVER has plans for a low-dose naltrexone (LDN) trial in children that will begin recruiting later this year, and only a few other trials have been distributed in North America.
During the provider panel, Viswanathan spoke about how many children come to her clinic as soon as they turn 18 because there is a severe shortage of care for children with the disease.
She said getting California lawmakers to advocate for a special “center of excellence” in the state could be a helpful step toward getting better care for both adults and children.
“It’s alarming the number of children being diagnosed with pediatric lung COVID,” she said.
It is alarming the number of children who are diagnosed with pediatric lung COVID.
Nisha Viswanathan, speaking at the California Forum
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