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One of the rarer stresses.

That was fun but according to Wikipedia, the first letter is wrong (I initially thought you were about to spell out a very rude word indeed).

Sorry, what I meant was that our factsheets could explain how naive patients can be used as reps by BACME to help forward BACME's agenda.

Maybe this is where our patient-produced factsheets can come into their own. A factsheet on this could even address the role of patient reps in such groups.

Come to think of it, in answer to my own question, this was #8 on @Jonathan Edwards's priority list of factsheets for S4ME to do...

I'd never seen this before. It's unbelievably awful. How can it be challenged?

Windmills?

That's a pity. If we were to ask ourselves, 'Who is Cochrane frightened of?', who would that be?

That sounds great, @Robert 1973. Getting an oral question into Parliament would be nicely embarrassing, and having the MP write letters to Cochrane and to the bodies that fund it that pre-empt the stupid replies that they'd normally give would be great.

Well done, Robert! Submit questions in the House or write to people?

I've been wondering about this lately. I'd have described the experience as my body screaming at me to lie down but now I'm wondering whether that's a learned response - that I've found that lying down relieves the symptoms and so now my brain has learned to tell me what to do. No idea whether...

I find it very odd that I can get straight out of bed at any time of day without feeling lightheaded or dizzy and yet be so disabled by OI.

I find it odd that that's not the sensation for me - in fact, when trying to describe it to doctors, I've said, 'It doesn't feel as though my body is heavy or like I'm being pulled down by gravity.' I wish it did, because it would be easier to explain. I don't have a word for what it feels like...

Thanks, @Robert 1973, very interesting to hear your thoughts!

Annoyingly, I test totally normal all the time even though my OI is hugely and constantly disabling.

Thanks, that's very good to see, and Chris Armstrong. Pity Dr Fluge isn't on the list or we could all have gone and asked him to give us a big placebo effect. :cool:

I agree with @Chris, OI seems to be my #1 disabling symptom.

@Jonathan Edwards - Do you still go to these conferences? Do they include the people we'd want to see there, such as the Edinburgh group?

Didn't IiME go through a phase of not wanting anyone to attend who had been in Stephen Holgate's UK CFS/ME Research Collaborative because it included BPS people? I seem to recall that they excluded the Edinburgh group for this reason, and it would be madness if they're still doing that. Have I...

No, I can stand up or sit normally and feel OK and then I gradually start to feel worse until the need to lie flat becomes pressing. I don't find it stressful (unless I'm in a situation where it's embarrassing to lie down in public, and that's not the OI causing the stress, it's the...