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https://www.s4me.info/threads/the-two-age-peaks-in-onset-of-me-cfs.7326/ edit: Not it, but the study is mentioned. On the same topic.

Combination therapy, or control group maybe? I haven't really thought this through, but it could be an interesting approach. I assume the experience of being administered either drug A or B would be less distinguishable.

The Steadytemp raw data might need a fair bit of brushing. From the published evaluation paper it looks like it would be capable of detecting trend shifts in individuals, but might not be ideal for comparing absolute temperatures between groups...

The steadytemp patch is cheap (15€ a piece). Don’t know how long it lasts for. Presumably till it falls off? https://shop.steadytemp.health/?_gl=1*1rb84q7*_gcl_au*MTQ5ODAyMzM4Mi4xNzU1NjM0ODM4

I’m also in this range, which is somewhat higher than my pre-ME levels. I measure with an ear thermometer frequently. I quite consistently messure a ≈0.5 C increase from baseline when in PEM. This device also seems fit for purpose: https://www.steadytemp.health/sciencebehind/ On a somewhat...

Here’s something:

Wonder if what Systrom is proposing with regards to peripheral shunting would lead to worse temperature regulation. If the total blood volume on average travels a higher diameter path than it is supposed to, surely heat exchange would be impacted?

The trial page for the pilot has a timeframe extending all the way through 2026, for comparison.

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...

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...