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yes that's what I meant... people think it's helpful but it's not

Never mind 'like' where is the 'love' button when you need it? Seeing her lying there on her bed in the EU chamber moved me to tears. Thank you Evelien & well done.

Since when does the word 'degenerative' "sound worse than it is"? I feel I can say for certain that anyone who is experiencing a degenerative condition finds that it 'is' a very great deal worse than the word can possibly convey. Orwell would be proud ETA well not Orwell himself obviously but...

That the 'real versus not real', & 'physical versus mental' arguments are red herrings - and falling into the trap of saying 'it's real - it's not all in our heads' isn't nearly as helpful an argument as it appears to be. ETA This is such a good idea @Andy

All of the above, but also where we are actually at in terms of what we know research-wise... A lot of advocates, it seems to me, have read quite a lot of biomedical research which isn't particularly reliable/high quality... I cant think how to describe what i mean succinctly, but they up-play...

How are you doing @Sallycatherineharris ? I know it's only been a few days but i'm thinkin of you.

I'm not surprised you get anxious at the thought of going back there! It makes me go cold just thinkin about it & I haven't lived through it. I just cant imagine. I wanted to add the hug emoji here but it looks to 'smiley' to be appropriate somehow. But I'm sending a hug to you (if welcome I...

That's interesting @Trish especially since EMDR is NICE approved for treatment of PTSD I believe.

I'm sorry you are experiencing these awful symptoms @Sallycatherineharris I do hope the nortriptyline will help, it sounds hellish God :eek: that sounds horrific.

indeed. And the hideous irony is that these things are the very things that many of the staff at these clinics - certainly their BPS 'grand masters' - would consider to be 'enabling'/indulging so called 'secondary gains' & therefore are sometimes refused as being a 'barrier to recovery'...

Well I decided to google it... as I suspected it came back with a wide range of opinions, mainly that since it cant be certain what causes it it cant be 'prevented'... but I also came across this type of thing, which tbh I found rather reassuring that such twaddle was being talked about MS as...

Well I decided to google it... as I suspected it came back with a wide range of opinions, mainly that since it cant be certain what causes it it cant be 'prevented'... but I also came across this type of thing, which tbh I found rather reassuring that such twaddle was being talked about MS as...

I could not agree more with all you have written @Mithriel. I wasn't aware MS was 'preventable'! ... what's their evidence for that?! - not asking you Mithriel, just saying i'd like to see it because I suspect there isn't any, at least none of good quality, but would be happy to be corrected.

I think that in general, many people don't give much thought to the way that anything works, until it stops working. Unless it happens to be within an area of interest for them.

haha i reckon that's exactly what it will be... & I cant wait to see them try to defend it :D

There is a list of all the NHS 'specialist' CFS services on the MEA main website. gosh... wouldn't that be marvellous! if they stopped referring people because patients said they werent happy with it & it didn't help, instead of blaming the patients. Edited - noticed the word 'because' was missing.

Appalling @Simbindi I'm so sorry you had to go through that.

Crikey that must have been scary Trish! Especially what happened in the ambulance, but having asthma, breathing difficulties & pain, being sent there on GP instructions & having a major life threatening episode in the ambulance which would have been reported to the Drs, is much more likely to...

Disgusting. They seem to have had compassion-removal as part of their "training"

Imagine going to a&e as a woman, with a dx of ME/cfs & all those symptoms... Likely to be misdiagnosed? Likely? Id say it would border on the miraculous of you weren't, and you'd get eye rolls at minimum & a load of derision as standard too I imagine.