By David Tuller, DrPH
Keystone gathering round-up from Sick Times
Many prominent Long COVID researchers gathered in Santa Fe, New Mexico, last week to discuss ongoing research and brainstorm in efforts to advance the field at the second Keystone Symposia on Long COVID and other post-acute infection syndromes. The first such event was held in the same city two years ago. (Keystone Symposia, a nonprofit group, organizes interdisciplinary conferences in the biomedical and life sciences.)
I would have liked to have gone this time, but I had pre-existing commitments in San Francisco. Luckily, Betsy Ladyzhets and Miles Griffin, the founders and editors of The Sick Times, were on hand to provide a comprehensive round-up of the gathering. (Ladyzhets had previously interviewed patient and advocate Hannah Davis, one of the four conference organizers, about the background behind the event.)
Here’s the top of the article:
“Last week, leading Long COVID and infection-association chronic condition (IACC) researchers met in Santa Fe, New Mexico, for the field’s second Keystone Symposia meeting. They were joined by advocates, clinicians, and representatives from pharmaceutical companies for a three-day conference focused on sharing new research and building consensus.
“Organized by researchers Danny Altmann, Hannah Davis, Akiko Iwasaki, and Avindra Nath, the conference built upon the first gathering in 2023, showing the many collaborations and connections that have flourished over the past two years and creating space for new ones.
“Among the over 170 attendees present were a notable array of newer researchers to the field, displaying the growing interest in Long COVID and related diseases.
“Altmann said in his closing remarks that the Long COVID field is ‘coming of age,’ and this conference represents an important milestone as researchers ‘build a cohesive global community.’ Long COVID has been studied extensively, with tens of thousands of papers over the past five years, but lacks approved treatments and widely accepted biomarkers. Many scientists have worked in silos, bound by their expertise areas or institutions — a challenge that this meeting sought to address.
“’We were very determined to build a meeting working across those unhelpful silos, and I think managed it,’ said Altmann in an email reflecting on the event.”
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Belated amplification of a haunting video for Severe ME Day
August 8th was Severe ME Day, so I’m a couple of weeks late on this, as I usually am on everything. I wanted to highlight a haunting four-minute video by my friend Anil van der Zee, who lives in Amsterdam. Anil, a former professional dancer, is bed-bound and lives in almost total isolation—except for Grigor, his feline companion. Besides drop-offs of food and other essential intrusions, Anil ends up seeing perhaps one or two or three friends a year. That’s all he can tolerate—and even that is sometimes too much, depending on the year.
I first connected with Anil when he invited me, almost a decade ago, to talk at a screening of Forgotten Plague, American journalist Ryan Prior’s documentary about his own experience with ME/CFS. Anil suggested I might appear virtually, while perched at home in San Francisco. I explained that, given that I’d been invited to talk in Amsterdam, I needed to deliver my remarks in person. We didn’t meet that time—Anil was too sick. Since then, we’ve seen each other a few times over the years, always for a brief spell of 15 or 20 minutes.
Anil’s body can no longer dance, but his spirit still does. Luckily, he has found other means of expression. From his bed, he deploys his considerable skills to create moving and sometimes heartbreaking videos. Besides any deeper meanings, they’re also just beautiful, even breathtaking, to watch—like the video for Severe ME Day.
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Fractured health care for postinfectious illness
Miriam Tucker, a prolific medical journalist based in Washington, D.C., has been covering ME/CFS for years, and more recently Long COVID. She is a frequent contributor to Medscape Medical News, for which she has just written a thoughtful piece called “Where is the Medical Home for Postinfectious Illness?” The piece addresses the fact that these illnesses cross the boundaries of multiple specialties, often leaving patients without coordinated care.
Here’s an excerpt:
“People with postinfectious chronic illness often receive multiple diagnoses from different clinicians, but there is no dedicated space for them in the current healthcare system, and as a result, their care is often suboptimal. Their diagnoses vary in number and degree and may include ME/CFS, dysautonomia/POTS, Ehlers-Danlos syndrome, fibromyalgia, mast cell activation syndrome, and long COVID, among many others…
“Many can trace these symptoms to a specific infection such as SARS-CoV-2 or Epstein-Barr virus or to a bacterial infection such as Lyme disease. But for others, the infectious trigger may not have been confirmed or recognized at the time. They were healthy and active, then they weren’t. Some are severely disabled and can’t work, go to school, or even do simple tasks without feeling depleted and even sicker afterward.
“The terminology is still being worked out. The umbrella terms ‘infection-associated chronic conditions (IACCs)’ and ‘infection-associated chronic illnesses (IACIs)’ have been used, along with the more specific ‘postacute infection syndromes (PAISs).‘”
Definitely worth a read.