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I’ve posted a thread on a paper which could be a good reference for helping understand mechanisms of actions and why it may not work for some people with ME/CFS here Mechanisms of resistance to daratumumab in patients with multiple myeloma

This recent paper has a good overview of usage of daratumumab in multiple myeloma including methods of action, with the main focus on resistance to treatment, either primary (no effect at all) or acquired (initial effect but resistance to treatment later evolves). Four areas are covered...

Mechanisms of resistance to daratumumab in patients with multiple myeloma Iversen KF Abstract Multiple myeloma (MM) is an incurable cancer in the bone marrow. The treatment of MM has developed significantly during the last 20 years, which has resulted in increased survival. Daratumumab is the...

There’s a whole section on regulation of the immune system which seems potentially interesting too Link Link And a discussion on metabolic homeostasis which mentions stopping mitochondria transfer in one part of the body maybe being beneficial as it allows mitochondria to be available...

I wondered about that too. It seems to be being pushed by the charity who funded it and the university doing it as a novel way of rapidly getting results, but then there aren’t really results yet. The changes they’ve seen are deemed significant but then when there hasn’t been changes they say...

A bit of a duplication but thought having this paper posted may be useful

The power and potential of mitochondria transfer Borcherding N, Brestoff JR. Preface Mitochondria are believed to have originated through an ancient endosymbiotic process in which proteobacteria were captured and co-opted for energy production and cellular metabolism. Mitochondria segregate...

Absolutely agree. It feels like there’s a bit of a mix of things in this thread. Maybe we need to separate people’s experiences (which are subjective and vary but I think need to be acknowledged as valid and often useful) from the question of widespread empirical evidence (which would be...

I found step count useless. Things that aren’t steps show up as steps and other activities which can triggering PEM are not counted. It was completely useless for someone who is severe and walks only a handful of steps a day. Perhaps finding a good objective and truly accurate proxy is very...

That isn’t what I was tying to say. Take a look at my previous post, this is at least partially about HR, HRV and PEM. There seems to be a predictive element or at least something which helped in learning about what activities could trigger problems. If you wait until you feel bad it is too late.

To add some more to the above mitochondria transfer chain of thought, a couple of things from DecodeME discussions @chillier flagged this in the candidate genes writeup And there’s also I’m wondering if these could all be contributing factors to why a cell may look to import mitochondria or...

When healthy and running my heart-rate was well into the mid 100s when doing so and I felt fine. Since ME/CFS if it goes above 80 I’m iffy and over 90 I can barely stand up and am screwed. Cause or effect is questionable but there’s at least a strong correlation here. Doing what I can to keep HR...

Yeah, at least for me HR has been a significant part of my illness. Now what that means is questionable. HR seemed to be a useful indicator but it was more a case of you’ve already done too much, stop. HRV was maybe more of an early warning sign, but tbh I’m not sure how accurate it was. It did...

Direct link to the above article in the Independent And today’s research press release/news item from University of Cambridge https://www.cam.ac.uk/research/news/common-diabetes-drug-and-antihistamine-could-together-repair-multiple-sclerosis-damage-trial-finds And the MS Society who sponsored...

These? Trial info in Norwegian https://www.helse-bergen.no/kliniske-studier/plasmacelle-rettet-behandling-med-daratumumab-ved-mecfs/ English language fundraising page with 3 documents (the two useful ones linked directly below)...

This is a really interesting paper https://pmc.ncbi.nlm.nih.gov/articles/PMC11590279/ Edit: thread on the paper now created here If I’m understanding and summarising correctly, as well as mitochondria being shared from parent to daughter cells, cells can also share mitochondria through...

Thanks @ryanc97 yeah, the papers on the Wikipedia page give a good overview of mechanisms too. And not to say NK and ADDC isn’t the mechanism that is important here, just trying to get a firmer idea of what that is grounded in and how confident we are. And it is perhaps useful to have someone...

That’s been a question I’ve had. Wikipedia quotes a few papers when it says: Do we have a circular argument here that NK cells must be relevant because the mechanism is ADDC and the mechanism must be ADCC because NK cells are relevant? Are other mechanisms just as likely or have I missed something?

Here’s the paper on the phase 1 trial of Bemdaneprocel https://www.nature.com/articles/s41586-025-08845-y And a paper on a phase 1 and 2 trial it seems https://www.nature.com/articles/s41586-025-08700-0 Finally info on the phase 3 trial exPDite-2 https://clinicaltrials.gov/study/NCT06944522...

Great summary @dave30th Thank you. Flabbergasting response from the lead author. They really do seem insistent in thing themselves in knots rather than just saying “yeah, this could have been done better” and withdrawing it.