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...
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...
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...
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...
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...
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...
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...
My OI doesn't involve feeling lightheaded, dizzy or faint, despite being so disabling that I have to lie down or have my raised all day bar an...
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