Search results

I agree, this is pretty good, though with some inaccuracies. I particularly enjoyed the boot being stuck into PACE.

That's a very good idea. Depending on how you did it, you might even be able to just record yourself on Zoom. I'm sure the forum is full of people who know how to do all this stuff.

When I was still able to sit somewhat during car journeys I used to sit in the front passenger seat and bring a squashy pouffe from my house and put it in the footwell so I could have my feet raised, because tilting the seat back meant my legs were still too low relative to the rest of me to...

I'll add a note about safety to my original post. I agree it's not ideal.

It's a while since I've done it but IIRC, I use both seatbelts on the back seat and insert my upper body through one and my legs through the other. I'm not sure if that's a very helpful description but I don't think I can do better!

I've had to lie down in the back of a car seat for journeys and asked my GP to provide a seatbelt exemption certificate (I'm in the UK - here is the UK government info page about them). Even so, while I'm lying down I put seatbelts across my body as best I'm able because if the car crashes, I...

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!