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I want to second whoever said, 'Thanks for engaging,' @MelbME - people having good-faith discussions on these things is always clarifying and useful. At the beginning, I think a lot of people who have just got ME will struggle to accept just how much activity they have to give up in order to...

You can spell 'emperor' out of those letters...

From another thread: I like this idea, because it fits with my problem of trying to describe what the need to lie flat feels like. It doesn't feel like any other symptom. It's not fatigue, faintness, heaviness, anything that people might expect. It's just my body screaming to lie flat. There is...

That all seems a bit random and mysterious!

You're right, that must exclude PwME on that basis. I'm wondering if we pose some sort of special risk to other people, though - not an infection as such, but passing something dodgy to them in our blood. I don't know whether people with autoimmune diseases such as RA or MS can donate...

@Jonathan Edwards, I was wondering what implications your theory has for PwME being blood/organ donors, if any. In the UK, at least, we've been under a donation ban since 2010 because of the XMRV hypothesis, since disproven, and now supposedly because it would be too debilitating for PwME to be...

I think these figures across five years show just what a priority area ME/CFS isn't.

Regardless of any gender bias, what do you think is going on with doctors and all this denial of patients' pain?

What were the funding plans for that? Is that not going forward? I don't remember hearing about it.

I agree. The optimum time would be when people have had time to feel the real impact of their experience at the clinic, and to have informed themselves a bit about the politics. The problem is access, of course - the clinics have a monopoly over quizzing their patients and we (and independent...

This is a really good point. I've often fantasised about being able to doorstep ME/CFS clinics and survey patients on their way out. The clinics are marking their own homework.

I think you've hit the nail on the head. Having seen this (my bolding)...: ...I don't think that the way forward is to critique the flaws in the questionnaire. You will anyway just end up down a rabbit-hole where they can just ignore or wilfully disregard what will be a big list of detailed...

This seems to me to be the key issue to use to torpedo this thing, rather than getting bogged down in arguments about the quality of the tool. The problem would be the existence of the tool. We might not expect the clinics to listen (turkeys, Christmas) but I would expect the MEA to listen.

I'm starting this thread in a hurry with a rather chaotic and wordy post about this important trial. The team have just sorted themselves out with an English-language donation page that that makes international donations easy, by allowing payment via various means including PayPal and IBAN...

A new announcement on this joint MEA/MERUK project today: This is the nanoneedle, right? I'd thought this whole enterprise had gone down the plug at some point but apparently not!

I wonder if the issue here is that 'remission' can mean both a complete absence of symptoms and a lessening of symptoms. We've discussed before that placebo effects don't represent any direct biological effects on the body of a person's expectations, but rather their willingness to ignore or...

If there is, would that be irreversible? I'm wondering whether we could ever in principle fully recover and if not, what that kind of damage in the hind brain would mean.

Can't hurt, they can always say no! Thank you for focusing on this. :thumbup:

Yes, it would be nice to know if they're going to crack on and do that...

Interesting about stiffness but this isn't stiffness - it's a sick sort of achiness. I used to get something similar if I laid in bed for hours as a teenager at the weekends, but this is it raised to the nth degree, with added yuck.