Search results

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.

Personally, the worse my ME has got the worse my resilience has got, because it's like being stuck in a pea soup fog mentally and all this stuff is happening or might happen at any second that is utterly terrifying and you're alone, even if you have family around you you are alone with your...

This is something that concerns me. Both in terms of bureaucracy not recognising the need for nimble and accelerated trials/approval (of course within the parameters of safety and sanity), and more so, the creation for a few years of a two tiered treatment system, where people whose families or...

What factors might make it hard to find effective therapies as opposed to fairly simple as far as science goes? Is it just a case of teasing out the exact mechanism proving tricky, or could it be that the disease doesn't respond as expected/hoped to drugs targeting what we believe are the...

I wonder if there will be some doctors who feel very upset at the thought they have been causing harm. Doctors like my GP, who talked me out of my certainty that what I was experiencing was not psychological. He did this in what he believed was my best interest, but in doing so he destroyed my...

PEM got worse Claiming success :bored: I mean maybe the PEM will get better down the line but as someone with terrible brain fog i would not trade any improvement in that for worsened PEM.

I would also be interested to know the answer to this, especially in the context of this comment. So is it the case that if we have a first approximation of ME/CFS mechanisms a drug would have a much better chance of succeeding, or is it still a small chance?