Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

[V.R.T.]

Have you checked the protocol document? They update this periodically.

No I haven't- I don't have the capacity to find the link right now though. Do you have it to hand?

 

[fst]

No I haven't- I don't have the capacity to find the link right now though. Do you have it to hand?

Search for clinical trials - EMA

No new update. But I don't think that means anything at this moment. Don't think they'd put the results in there before submitting the paper.

 

[SugarSquared]

Yeah, at this point, I expect to hear nothing until the phase II trial is done. They might be worried about introducing bias by sharing results, even if it’s from another study (if I understand you right).

 

[V.R.T.]

Yeah, at this point, I expect to hear nothing until the phase II trial is done. They might be worried about introducing bias by sharing results, even if it’s from another study (if I understand you right).

I dont think that they are worried about that - they released the results of the long COVID patients they gave less doses to last winter.

I always understood the plan was to release the results of this pilot expansion as and when it was done otherwise, why not make it part of the phase two?

The strong implication was that they would be releasing these results from the smaller groups as and when they were ready.

 

[Utsikt]

My reading of the updates they have provided on ResetME is that the recruitment process has required a lot of resources. I would not be surprised if there are delays to processing and disseminating the severe data because they’ve prioritised the bottlenecks for ResetME.

 

[Jaybee00]

Just submitting a paper with this group {Fluge} and have run the samples literally from this study on our platforms thanks to a connection from @ryan_cxm Autoantibodies are partially reset, level of that correlates with outcome.

 

[Jaybee00]

“Well I improved 7 months later to go back to work full time again, but I don’t know if it is was IVIG or creatine or modafinil that helped me.”

 

[V.R.T.]

“Well I improved 7 months later to go back to work full time again, but I don’t know if it is was IVIG or creatine or modafinil that helped me.”

We've discussed this kind of anecdotal report before. I find this kind of twitter truth slinging by people 'in the know' frustratingly vague.

How would 'patients' know that the trial had failed? We know people who didn't have an effect might be more likely to talk about it online, because you're not supposed to and you'd be a lot less likely to break that and therefore potentially jepoardise the trial if you are having positive effect. Whereas if you are frustrated and bitter that it didnt work for you (or you got the placebo)...

Has this person spoken to most or all of the patients, or just like 5 people like last time this happened?



I'm not saying it's impossible that dara p2 has completely fallen flat on its face, I just find this kind of vagueposting based on rumours deeply unreliable, not to say immensely stressful and frustrating.

 

[Jaybee00]

Has this person spoken to most or all of the patients, or just like 5 people like last time this happened?

Plus he is not Norwegian.

 

[sb4]

“Well I improved 7 months later to go back to work full time again, but I don’t know if it is was IVIG or creatine or modafinil that helped me.”

So that is the Ryan that used to post here and tried Daratumumab?

It sounds like he's in remission, has he posted about it here or anywhere else?