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Worth noting that this study also finds atrophy in MS patients, and suggests selective type IIa atrophy. The Wüst paper finds no atrophy in patients.

There was a trial by the Fluge/Mella team in Bergen on TNFa inhibition along with Rituximab. It got terminated, and I haven't come across any published data. Might be worth the try reaching out to ask about their experience with it. ( @jnmaciuch )

I think this would only make sense if there’s some form of funding commitment and a complete roadmap from a pharmaceutical co? A Phase II trial could likely be funded by patients, patient organizations and already available funds. A Phase III however would be much more of a financial undertaking.

Yes! From the paper: «Daratumumab is currently being tested in a clinical pilot open study of moderate to severe ME/CFS in Norway (EudraCT number: 2022-000281-18).»

Maybe I read the part you are referring to wrong, but I tought he was referring to that better catering to the needs of patients from the get-go could have provided better outcomes. That would be more in line with the public debate that has followed the publication. ‘Facilitation’ (Nor...

I’v been trying out different otc supplements to support blood flow by increased NO. I found Citrulline Malate felt superior to other stuff I tried (l-arginine, concentrates of beetroot juice, bicarbonate etc.), but never really considered the role of malate. Interesting! The citrulline...

Hmm. Any information on ‘PHOE-01’, or is it just a pseudonym? Looking at a few of the recent publications she’s been involved with Ebselen might be a candidate.

Something like this? Jockenhöfer, F., Knust, C., Benson, S., Schedlowski, M. and Dissemond, J. (2020), Influence of placebo effects on quality of life and wound healing in patients with chronic venous leg ulcers. JDDG: Journal der Deutschen Dermatologischen Gesellschaft, 18: 103-109. Ashwin...

I find controlling air humidity in my bedroom helps a lot. Even going from 60% to below 50% makes a huge difference for me. It should make the room less hospitable for both mold and mites. A dehumidifier obviously generates some noise, but it works quite well to run it at full speed in the...

Intuitively makes sense. Can’t find anything conclusive myself. A quicker release could maybe saturate CD 38 receptors faster, and thus allow for lower dosing? (https://pmc.ncbi.nlm.nih.gov/articles/PMC5511594/)

From the page for the study at Haukeland University Hospital (Google translate) : «In order for daratumumab to be absorbed by the body, it is combined with another substance called hyaluronidase. Hyaluronidase is an enzyme (protein) that regulates how quickly daratumumab is absorbed by the body.»

Exactly! Always a lot of words about what could be if the stars align, but failing to ask the most central question: What experiments would confirm this, and how do they differ from the work that has already been done?

Just some speculation: It makes sense to publish this broader look at the cohorts first. Publishing data with strong emphasis on responders first would risk creating too much hype for a very potent/harmful drug. Shouldn’t be this way - data is is data, but with the politisation of the field...

Just to underline the absurdity.. Pair this with the repeated grip strength testing, and imagine the title: “ME/CFS is associated with better risk/reward navigation.”

Verity&Science1, who describe themselves with: “I am interested in medical and allied approaches which assist people to recover from traditionally hard to treat conditions such as ME/CFS.” Eerily familiar.. The wording of the added paragraphs on the BBC podcast lacks neutrality big time, and...

Very much agree! I can't get past the fact that they seem unwilling to take in that a lot of patients who are on the milder side of the scale have little problem exerting themselves on a good day. Both anecdotally and from surveys, the altered "subconscious" effort preference is not a...

Is this the same Toby Young previously writing for Spiked and standing alongside Living Marxism in heavily underplaying the genocide on Bosnians in the early nineties? In that case I’ll bet you Monbiot is already caught up in researching!

Just to make it clear, from watching the man heading this team debating LC in various news channels: he is well up to date at this point in time. Publications will catch up. He takes the problem very serious, and recognizes both the burden on patients and society of not tackling LC (and ME)...

All I see is plausible deniability..