2024 Stanford MECFS meeting

https://twitter.com/user/status/1830990933913149820

 

Ok…. Why no talks by Fluge/Mella? Was there a falling out?

Also not thrilled to see KDM there.

 

This is a closed meeting right? No videos made available after?

Interesting about no Norwegians.

 

Yes, closed.

 

To be a fly on the wall...

Especially interested in what Hwang is saying.

 

https://twitter.com/user/status/1831012915580936654


Robert Wust talking about PEM. Exercise is NOT good medicine for ME. Muscle abnormalities in PEM. LC and ME groups. Not due to inactivity. Studies muscle biopsies.

 

Yeah, this is not good. It's about time we the community cut ties to these cranks.

 

Phair and Davis are interested in the Jak-Stat inhibitor that de Meirlier uses, Filgotinib. They think it can turn off innate immune reactions and therefore address some of the fundamental issues in me/cfs.

I admit I'm attracted to the idea that innate immunity is stuck on. It is plausible. Filgotinib has been available in Belgium for a few years now. it's not impossible that it's an effective treament for some people.

I do see a lot of complaints about de Meirlier's costs though. He's very expensive and if the drug doesn't work for you I can see you'd be furious. It doesn't follow, however, that the drug doesn't work simply because the doctor likes driving a Porsche!

Hearing what he has to say is a good idea. It's a shame we can't all hear it but I'm hopeful the assembled minds will be able to assess his claims fairly.

 

Indeed!

 

Any idea why the interest in Filgotinib versus say rinvoq?—both are JAK1 drugs.

Rinvoq advertises that it reduces fatigue (presumably in RA).

 

I'm sorry I must have missed something. Is there a study by Wust concerning M.E biopsy groups and PEM? I'm only aware of the study for LC.

 

https://twitter.com/user/status/1831401423210475964


now it’s lightening talks. 2 min. 1 slide. First is Tess Fallor on AmoxiClav induced remission events.

Ugh!

 

https://twitter.com/user/status/1831378817748730115


"#MECFS24 Brayden Yellman MD. ME/CFS comorbidities. hEDS. MCAS. Relationship between these and others. Small fiber polyneuropathy. GI dysmotility. CCI and AAI. Tethered cord. Venous congestion syndromes. Intercranial hypertension. Amazing talk."

They're still talking about CCI and AAI? Wild.

 

And it is "amazing".

 

It seems that a disadvantage of closed meetings is that questionable ideas can go unchallenged by outsiders.

 

For a bunch of reasons, I don’t really have any problem with the idea of a closed meeting.

I do sort of have a problem with them starting that the reason for this closed meeting is so that they can present “unpublished data”. Actually the reason you have science meetings is so that you can present data/results prior to publishing and hopefully get some feedback. Once your study is published in the literature then there is no reason to give a conference presentation because people can just read the paper.

 

They've performed the same biopsies in people with ME now and are analyzing the data. I presume he's basing his comments on preliminary data.

 

https://twitter.com/user/status/1831401855131566329


No way! Ugh ME/CFS is not 'mechanical'.