Clinicians and people with Long COVID gathered in Santa Barbara, California, in late March for a forum on advancing clinical care in infection-associated chronic conditions
Clinicians, researchers, and people with Long COVID gathered in Santa Barbara, California, in late March for a forum on infection-associated chronic conditions and illnesses (IACCIs).
The free hybrid event that drew hundreds, “California Long COVID + IACCI Clinical Implementation Forum,” was hosted by the nonprofit Chesley Initiative, which offers events on clinical practices for complex chronic conditions. The forum, which was a continuing medical education (CME) course, included a keynote speech from David Putrino, director of the Cohen Center for Recovery from Complex Chronic Illness (CoRE) at Mount Sinai in New York City.
A panel of providers from leading Long COVID clinics in California also took center stage. While the forum primarily focused on treating the disease in adults, a patient panel exposed the slow progress in pediatric Long COVID care. The forum did not require any airborne virus precautions.
CME credits are required for healthcare professionals to keep their medical licenses and improve their clinical care by broadening their knowledge on medical advancements. Each state in the U.S. has different requirements for CMEs; California, for example, requires 50 hours every two years.
“The increasing prevalence of Long COVID and IACCIs, necessitates that all primary care physicians in the U.S. receive a basic evidence-based training of how to diagnose and treat these conditions — just like they do with cancer, diabetes, and other chronic illnesses,” Chesley Heymsfield, the director of the Chesley Initiative, told The Sick Times. “Early diagnosis and evidence-based clinical care can really make a difference in people’s lives and help save lives.”
During the keynote address, Putrino shared his clinic’s practices while treating IACCIs, also called IACCs, which are also featured in CoRE’s recent Infection-Associated Chronic Illnesses Provider Manual. The guide, like the Bateman Horne Center’s Clinical Care Guide, is a leading resource for clinicians in treating complex chronic illnesses, though they are not peer-reviewed or based on formal consensus processes.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’ new, but delayed, website on Long COVID. Putrino expressed frustration during his lecture about having to leave out many studies and the CoRE guide due to the constraints of CME-accredited courses.
In the future, CoRE is considering “pairing CME-accredited presentations with non-CME presentations so that we can be a bit more open about discussing pragmatic tips and clinical pearls for providers that are not yet part of formal guidelines or [Food and Drug Administration] approved,” Putrino wrote to The Sick Times.
He explained that, as a disease affecting millions of Americans, Long COVID needs knowledgeable primary care providers, instead of being treated as a clinical area of special interest for just a handful of providers. “A coordinated national education strategy is needed so that we can treat Long COVID like the national emergency that it is,” Putrino wrote.
“Treat drivers, not symptoms”
Putrino recommended providers use the National Academies of Sciences, Engineering, and Medicine’s definition of Long COVID, which describes Long COVID as any health issue following SARS-CoV-2 infection that persists beyond three months.
The comprehensive definition, which was published in 2024, offers guidance around identifying the disease and states that a diagnosis of Long COVID doesn’t require a biomarker. Nor do the definitions from the Centers for Disease Control and Prevention or the World Health Organization. He also mentioned that many people with Long COVID do meet the diagnostic criteria for other IACCs, like dysautonomia.
During his talk, Putrino went over ten possible “drivers” of IACCs, including pathogen persistence, pathogen reactivation, mitochondrial dysfunction, vascular dysfunction, dysautonomia, mast cell activation, and more. Rather than treating symptoms of IACCs — which, in the case of Long COVID, include more than 200 — he urged providers to treat “drivers” of symptoms.
Putrino told clinicians to treat each case of Long COVID individually, since the disease is so complex. “When you’ve seen one Long COVID patient, you’ve seen one Long COVID patient,” he said. “We need providers to understand that this is not a silver bullet issue.”
As many people with these illnesses are gaslit by medical providers while seeking care, Putrino emphasized a strict “do no harm” approach. He recommended that clinicians should wear masks while treating people with IACCs and implement clean air and far-UVC in their clinics to better protect from airborne pathogens that could further disable people with IACCs. He also stated to never “psychologize biological illness.”
Ann Forbes, a retired public school teacher who has Long COVID, attended the forum virtually. She wrote to The Sick Times, “Perhaps the statement that was most meaningful to me was when David Putrino said that people with chronic conditions demonstrate good adaptive coping skills. It was confirmation that being chronically ill is hard and that modifying one’s behavior to cope is a recognized achievement.”
Going forward, Putrino said he hopes to see more complex and combination treatments trialed for Long COVID, citing the advancement of such treatments in oncology.
When you’ve seen one Long COVID patient, you’ve seen one Long COVID patient. … We need providers to understand that this is not a silver bullet issue.
David Putrino, speaking at California forum
“Clinical pearls” and lived experience
Later, the provider panel featured physicians Linda Geng, codirector of the Stanford Long COVID Collaborative, Caitlin McAuley, director of the Keck Medicine of 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, Geng hopes to see more efficient phenotyping for Long COVID and IACC research, which would sort people with the disease into different groups to help advance clinical trials and care.
The panel unanimously agreed that telehealth has been vital for treating people with Long COVID and other IACCs in their clinical practice. “[It has been] essential for Long COVID care,” McAuley said. “I can’t even think of how many patients would never have made it to our clinic, never have engaged in care, because they just could not get there physically.” They also agreed patient navigators are essential in managing the administrative burden of Long COVID.
I can’t even think of how many patients would never have made it to our clinic, never have engaged in care, because they just could not get there physically.
Caitlin McAuley, speaking at California forum
Viswanathan said that in her experience, she has found the heart failure drug ivabradine to be helpful for some people with Long COVID. She has had success with insurance covering it when patients are diagnosed with inappropriate sinus tachycardia (IST), a type of dysautonomia.
While there are no currently FDA-approved treatments for Long COVID, Viswanathan urged providers to consider prescribing medications off-label, as some may help improve quality of life. “Learning to do no harm also needs to include being on the edge of medicine,” she said.
On top of the CoRE and Bateman Horne Center guides, the Patient-Led Research Collaborative and the telehealth clinic RTHM recently published a Long COVID Treatment Guide with potential off-label drugs, supplements, and lifestyle interventions for people with the disease to discuss with providers who may not be informed on Long COVID.
While care is advancing for some adults with Long COVID, the patient panel showed the stark contrast for the reality of more than 6 million children in the U.S. with the disease.
Three patients and one caregiver, Royal Hansen, the vice president of privacy, safety, and security engineering at Google, joined the panel. He spoke about his 10-year-old son’s experience with severe Long COVID and myalgic encephalomyelitis (ME). The illnesses have left Hansen’s son bed- and homebound, and unable to attend school. Before, he was active and enjoyed playing many sports.
“Little by little, everyone forgot about him,” Hansen said, joining virtually from Utah. “It’s a little bit surreal,” he said about the isolation his family experiences because of his son’s illness. Hansen described significant trouble for his family in finding care for their 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 treatments they have tried have made him worse.
Guidance for Long COVID in children has moved at a glacial pace, and there have been only a handful of pediatric clinical trials. RECOVER has plans for a trial on low-dose naltrexone (LDN) in children that will begin recruiting later this year, and only a few other trials are scattered around North America.
During the provider panel, Viswanathan spoke about how many children immediately come to her clinic when they turn 18 since there is a severe shortage of care for children with the disease.
She said approaching California lawmakers to advocate for a specialized “center of excellence” in the state may be a helpful step in getting better care for both adults and children.
“It is horrifying the numbers of children that are being diagnosed with pediatric Long COVID,” she said.
It is horrifying the numbers of children that are being diagnosed with pediatric Long COVID.
Nisha Viswanathan, speaking at California forum
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[…] researchers and medical providers also use the term infection-associated chronic condition (IACC) or infection-associated chronic disease (IACD), as it isn’t just viruses that can lead to chronic […]