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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.

Actually, that would be good to know in any case. I think they have some funding/involvement from the MEA so I wouldn't be surprised if they used their scale

precisely

This is exactly what happened to a dear friend of mine who has severe & enduring psychological injury - trauma related. She was having psychotherapy which she said was really helping & had lead to some easily observable changes & improvements, but in the middle of the process they disbanded the...

Well I came across an issue with it on 2nd page of questions... What advice did your HP give you about activity while feeling ill a)increase it b)decrease it c)wasn't given any advice Do you think following the advice you were given when you first spoke with a healthcare professional about...

:rofl::rofl::rofl:

@Trish & @ProudActivist I couldn't agree more, I just sometimes cant believe people fall for some of this stuff & what does a celebrity endorsement mean anyway? I don't understand why somebody thinks a famous actor or whatever is likely to be any more trustworthy or knowledgeable than the woman...

https://www.bbc.co.uk/news/blogs-trending-49763144 :emoji_rolling_eyes:

This was exactly my response. The whole thing is perverse.

Wow! Thats appalling as it relates to PwME. I agree that NICE definitely need to see this, I am not well enough to submit evidence to the committee but i hope someone will submit this?

Oh for God's sake why do they keep coming up with these completely ineffectual tools. Their understanding of the conditions they're studying & how to measure their effects is just abysmal. :banghead: And the useless tools proliferate & are celebrated. Oh and the name of it is nauseating.