David Tuller: Trial by Error: Keystone Gathering Update; Anil’s Severe ME Day Video; Fractured Care for Post-Infectious Illness

[ahimsa]

The latest post on virology blog from David Tuller, covers multiple subjects:

David Tuller: Trial by Error: Keystone Gathering Update; Anil’s Severe ME Day Video; Fractured Care for Post-Infectious Illness

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.

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.

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.

 

[Sasha]

@David Tuller quotes the Sick Times in that 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.

AFAIK, ME/CFS has never had a conference with pharma companies attending. I'm wondering how LC has got there in only a few years and we haven't managed it in decades - and how we get that to happen.

 

[Jonathan Edwards]

AFAIK, ME/CFS has never had a conference with pharma companies attending. I'm wondering how LC has got there in only a few years and we haven't managed it in decades - and how we get that to happen.

I suspect pharma companies may have had presences at the IACFS/ME meetings. I don't think it is necessarily a good sign.

 

[Sasha]

I suspect pharma companies may have had presences at the IACFS/ME meetings. I don't think it is necessarily a good sign.

I agree that it's open to question whether it's a good sign but it's a sign at least that pharma companies recognise a real disease when they see one, and presumably we're going to need their interest at some point...

 

[Jonathan Edwards]

recognise a real disease when they see one

No, they just recognise a real market when they see one.

 

[Utsikt]

No, they just recognise a real market when they see one.

The market is there, but the academics have yet to do the hard work for them so they can’t be bothered to enter it yet because they might not make obscene amounts of money in a while.