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Any idea why the interest in Filgotinib versus say rinvoq?—both are JAK1 drugs. Rinvoq advertises that it reduces fatigue (presumably in RA).

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.

Yes, closed.

Ok…. Why no talks by Fluge/Mella? Was there a falling out? Also not thrilled to see KDM there.

Mostly agree with these points about overly long introductions. Yes because the general knowledge level about MECFS is much much lower than say MS or Alzheimer’s. However, I do not favor de-emphasizing the role of fatigue in ME/CFS (or think that it is misleading to focus on fatigue). For me...

But there is no planned phase 3 trial for cyclophosphamide. So if you want “robust evidence” it may never happen.

Janet Dafoe This was at a hearing with three speakers who spoke for about a half an hour each and at the end the public got to talk. Ron had two minutes. He couldn’t explain the whole model and he couldn’t explain all the details!

Ron Davis today at the Santa Clara County ME hearing: “..we think this disease is initiated when you initiate innate immunity…you can turn it back off by JAK-STAT Inhibitor…we have seen 1 patient in Australia who took it..within 3 days of taking the drug was completely cured..”

The Tweet by Elle Davin is very good actually. More like this please! If I was Vinod, I would use my wealth to fund much more MECFS research. But by replying to him on X it shows him that many more people are interested in MECFS research and maybe pressurizes him to fund more.

Sad video Anil Van Der Zee A short segment about what it's like to have a relationship and #longcovid. This bit broke my heart. English subtitles included. You can watch the entire episode here:

Doesn’t mention ME/CFS, of course. Journalistic malpractice!

For UK people—does NHS give you GLP1 drugs for free?

https://www.cnn.com/2024/08/27/health/zepbound-tirzepatide-new-vials/index.html Lilly launches lower-price weight loss drug without injector pen Only 2.5 and 5mg doses

Scientific fraud kills people. Should it be illegal? https://www.vox.com/future-perfect/368350/scientific-research-fraud-crime-jail-time

https://jnnp.bmj.com/content/early/2024/07/04/jnnp-2024-333920 this study shows that lower doses of cyclophosphamide can be effective and safe in people with MG, including older age. Clinicians may consider low-dose cyclophosphamide as a safe and cost-effective intervention in carefully...

I think it’s better than nothing. If something is really out of whack, it will show up even in a small sample.

It’s this—there is human data actually A phase 1 study of PF-06840003, an oral indoleamine 2,3-dioxygenase 1 (IDO1) inhibitor in patients with recurrent malignant glioma https://pubmed.ncbi.nlm.nih.gov/32436060/

Can anyone access the name of the IDO1 inhibitor they used? Thanks.

https://scitechdaily.com/stanford-reverses-cognitive-decline-in-alzheimers-with-brain-metabolism-drug/ Stanford Reverses Cognitive Decline in Alzheimer’s With Brain Metabolism Drug