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There's been some discussion on another thread of an individual PwME who has been very severely ill for many years attributing his recent marked improvement to the unproven treatment protocol that he was using just beforehand. It's just the latest example of something that we see all the time...

I agree we just don't know, but I hope that they'd be in a better position to give a timeline estimate than they were a few months ago.

I'll be glad to see the funding update, and I know they were flooded with applicants and had started the injections for the first few, but I think the big update that everyone will want, on top of the funding update, is a timeline update. I hope someone who is in touch with the team would be...

I'd be really keen to get an update on where the study is at with participants recruited into the trial and what the expected finish date (or year, at least) currently is. Does anyone have contacts to get that info?

Interesting, because beetroot gives me killer migraines!

I'm struggling to read long stuff at the moment but I couldn't see anything in the article that really explained how they were going to do things differently.

Personal experience is a powerful thing. People don't think in statistical terms. (That's what we're here for.)

That's incredible - I'm so pleased to see him so much better.

You're right, I haven't! :) That's great - when is it coming out?

Who/what is Adam?

Spot on, and funny, too!

Although a neurologist helpfully explained to me, talking about a different condition, 'Functional - by which I mean, "all in your head".'

Do you think we're getting any nearer to being assigned to a particular specialism?

We may have talked about this before, but what will be the trigger for getting us put into a particular speciality? Formally published DecodeME results? A positive dara trial? Something else?

Is part of the problem that we don't belong to a particular discipline? For example, we're not in rheumatology so we can't get normal rheumatology care? Scary.

Do we have any idea how many patients have already been enrolled and have begun treatment?

Does this actually present an opportunity - namely, to use ME/CFS set a new standard? (Serious question.)

This is a crucial statement and it's amazing that it needs to be pointed out. My impression is that people have reconceptualised ME/CFS as a temporary state simply in order to be able to apply rehabilitation to it.

I haven't read the guide yet because it's 35 pages long. QED.

Generally, the more you say, the less people read, and the easier it is for them to focus on minor points and dodge the big ones. I favour documents that are as short as possible, in general. But I haven't even read the guide, yet.