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This is facinating to me because my OCD has gotten so much worse as my ME has progressed, and that often feels like an inability of the brain to sort of 'forget' facts or memories that most people would be able to, and so the brain keeps sort of scanning or interrogating them over and over...

Immunoadsorption trial in ME/CFS Elisa Stein, Charité - University Medicine Berlin, Germany 10:10 10 min Immunoadsorption in severely ill ME/CFS Georg Schlieper, Dialysis Hannover - Center for Kidney, Hypertension and Metabolic Diseases, Germany 10:20 30 min B cell depletion targeting CD19...

That's still very impressive from moderate!

Do they mention how big the improvement was? The FB group was reporting 10,000 steps in the responders, was that the case?

That's a little ominous - I suppose we will just have to wait and see if severe patients respond in phase 2...

The million dollar question is, do the non responders have a different illness or is the upstream cause the same in both? And how to induce the same effect in the non responders...

Okay apologies all for crashing out the other day. On reflection I think as @Yann04 says the most sensible/hopeful course of action is an accelerated phase 3 if phase 2 goes well. Apologies @Utsikt I took our disagreement a bit too personally. It's a difficult time for me at the minute.

Will be interesting to hear an update on the Ryback blood project and PrecisionLife, but I suppose no DecodeME update at this webinar means we won't be getting results before 6th June... Playing the waiting game is hard.

Didn't they cut the dose in half in the phase 3 that showed no effect? Or was that Ampligen? But yes, unfortunately life isn't that simple because otherwise when your doctor tells you your symptoms are being caused by depression and you need to exercise you wouldn't end up with a severe form of...

If half the patients go into a complete lasting remission like in the pilot and cyclo studies how could that ever be insufficient?

If death was the only catastrophic negative outcome from illness worth considering, none of us would be here.

I really am puzzled by the response here sometimes. I keep being told there's all this hope then in the same breath that treatments are a decade away and any hint of accelerated approval is tantamount to administering drugs to patients with no evidence.

Nobody is advocating for random untested drugs to be given to patients.

But you did not address any of my points. You acted like I was saying i want random untrialled drugs administered because i think a drug should be fast tracked for approval. Was rolling out the covid vaccines fast a bad thing? People had bad side effects then. Sometimes a situation demands...

I am aware there is a reason we do trials. But we have the data from phase 1 and 2 cyclo and phase 1 Daratumumab, plus in this hypothetical situation we would have a positive phase 2 dara. If these all show that around half recipients are going into remission there needs to be some kind of...

I mean if they were going straight to phase 3 now I'd agree but considering phase 1 took 3 years it hardly seems ethical to make millons of people who could be put into remission wait another 3-4 years after phase 2. I know I'm going to be told that's just the way it works but I think the...

If this HLA-improvement association holds up in the dara trials, surely this is massive? Like a subset of significant responders to a certain type of drug could not only help so many people but tell us a lot about the pathways involved, perhaps in the non responders too. Especially if it's...

Yeah I don't think the slide was claimed to show the results. But yeah perhaps I should have just waited for the night session! We shall see what is what then.

https://bsky.app/profile/oppklipt.bsky.social/post/3lomv6fzgpc2i This was posted by an ME patient on Bluesky earlier. Can't verify source as I'm not on Facebook. Let me know if this link isn't ok. Reporting that Daratumumab pilot results were presented at the Norwegian conference: 6 could walk...

Perhaps they have released this part first to head off the inevitable BPS criticism.