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https://events.mecfs-research.org/en/events/conference_2026 A mix of great speakers and a couple of not-so-great ones.

What does it say?

https://www.nytimes.com/2026/04/21/opinion/measles-child-britain-vaccination.html?unlocked_article_code=1.clA.vAPp.fIxx9c3In5dh&smid=url-share Well written article—UK focus. “We got the diagnosis when one of the tests of her spinal fluid had come back from London. Renae had subacute sclerosing...

Is this a view that is widely shared among physicians in the UK? I think in the USA orthopedic doctors will almost always prescribe PT for their patients for just about anything/everything.

My own experiences were that it was worthless for plantar fasciitis, where they made me stretch and roll things under the bottom of my foot, and similarly for a sore knee where they made me try to balance on one of those wobbly board contraptions.

I’m asking this question in general, not specifically limited to ME/CFS. Just imagine how hard it is to do RCT blinded studies on these various treatments. I’m sure that there are one or two small areas where there might be a good evidence base for specific treatments, but in general, I’m not...

Bumping @jnmaciuch @Jonathan Edwards Thanks

Obviously I’m aware that the various JAK drugs have different affinities for different receptors 1/2/3, etc., but how likely might it be that only one specific JAK drug “works” for ME/CFS and the others basically not at all?

This was in the original post above so idk “Baricitinib I just recently started taking this exactly 2 weeks ago which is the minimum time it takes for it to take therapeutic effect. “

Positive Bari anecdote

Or Danielle Meadows—same email format as above.

The article is Meghan O’Rourke’s review of Alexandra Sifferlin’s new book “ The Elusive Body”.

Also just took the survey—not burdensome but also does not ask which meds/compounds you want tested/researched.

“Still, beyond these unforced errors, there are more zebras than physicians are often willing to admit. Perhaps the worst mistake a doctor can make is not their believing that they know everything but their acting as if everything is known. Today, millions of people live with poorly understood...

“A new piece from me at @atlantic: Modern medicine has diagnosis crisis, which isn't just about rare diseases — a huge number of people with #longCOVID, #MECFS, & more go needlessly undiagnosed b/c patients aren't listened to, as Alexandra Sifferlin shows in her excellent new book”

Anyone can post a link to unpaywalled? Supposedly mentions ME/CFS

https://www.omf.ngo/introducing-ctn-lite/ Today, we are excited to share a significant step forward: the launch of CTN Lite, a new initiative that will bring us closer than ever to delivering real treatment options for ME/CFS—faster, smarter, and with patients at the center of every decision...

Abstract Circulating microclots are increasingly linked to long COVID as well as its persistent symptoms such as fatigue, cognitive deficits, and cardiovascular complications. These conditions can become debilitating or even life-threatening, which create an urgent need for rapid and reliable...

For long covid people out there baricitinib 4mg/ day is the best I have felt for 4 years. I tried low dose rapamycin but did nothing for severe Long covid brain phenotype. I have never been that good I stay very cautious out there. I hope trials work we deserve so much.