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"The syndrome is clearly an umbrella term for different illnesses that are poorly understood by modern medicine. We met people who had recovered thanks to talking cures. One told me his ME disappeared when he took a course of psychological treatment in his 20s and understood what he had to gain...

The previous SMPDL3B paper was critiqued on here for methadological/statistical issues - I think it was claimed the differences were not particularly significant? Does this paper have similar issues?

Maybe it's brain fog but I still don't understand what the specific demands of this legal challenge are. I want to support it but I can't if they aren't clearer about what kind of service they are pushing for. I feel uncomfortable giving my money to any campaign that might inadvertantly further...

This is true, but if hypothetically there was a way that with more funding the trial could finish six months sooner with the same rigorousness we need, then we have to find it, because it may mean a significant proportion of that six months worth of post viral suicides and deaths will be...

To be crystal clear: I am not advocating for the study protocol to be changed now, I'm asking why they chose 72 months.

I totally forgot that! Of course. Well lets say 9 months then, so six months after for unbinding. Why does the follow up have to remain blinded six months after the injection is given? Im just curious why you need such a long blinded follow up period, and when you could unblind after 6 months...

After six months? Im not sure if that is true. Six months would surely be enough time blinded to see who responds. The improvement with dara (if real) happens a long time before that, so it's not like you would be inducing placebo improvements when you unblinded. But I'm not saying it should be...

While I doubt they could be persuaded to break the blinding sooner, I do wonder what the rationale is for having such a long period of blinded follow up. Surely six months blinded would be enough to show an effect and identify responders, and then you could follow for 72 weeks or more unblinded...

Yes this is the thing, I am too disabled to hide it anymore.

Why is RECOVER-TLC not exploring any of this? Why do they insist on working siloed off from the rest of the post infectious illness field? I will never understand.

I agree too, this is a really good idea. Agreed @Sasha, it would be good to talk to Haukeland about their perspective on all of this. I'm not up to it myself atm unfortunately.

It sounds like we will need to wait for the HLA analysis before we can say anything about this either way with confidence, in that case.

This

Agreed. If there is a way this can go faster without losing the standards of rigour that we need, we need to know and work towards it happening. Whether the drug works or not, we need to know as soon as it is feasibly possible. I think the amount of medical neglect we have faced makes us numb...

My point is that they seemed to have an overly rigorous criteria, perhaps to slow things down to a crawl as part of said foot dragging exercise. Which might sound conspiratorial but when you consider the history of ME at the NIH and the effort prefference nonsense they came up with... Fluge and...

Nobody is suggesting that. Yes like the NIH study you referred to.

I don't think this is a useful comparison. The NIH study was a deliberate foot dragging exercise run in part by someone whose goal was to prove ME was caused by thoughts and behaviours. There was a lot of criticism of the fact they only enrolled under 20 patients from such a big pool.

This is a very good question. Perhaps we could email the trial coordinator about it. I think her email is somewhere in the last few pages of this thread.

Perhaps there'll be a trial called Have-You-Tried-Turning-ME-Off-and-On-Again?

Do they mention why they had reason to distrust it anywhere?