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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.

Also i'd advise writing it up roughly & then complete the rest of the form before finalising & putting on the form, because in completing the other questions you may prompt yourself with things you wish you'd included.

I cant remember my form... do you mean the first question where it asks what your conditions are & how they affect your life? If so.. We just gave an honest explanation of all the ways in which my condition affected me - eg list of symptoms, what I had to give up & why - so I included all the...

This. My first thought whenever I read about all this 'adrenaline is the cause' gumph, is 'No it isn't. I feel orders of magnitude better during a fight or flight response, it's when I'm calm I feel at my worst'.

I'd be wanting to show that to a med professional for sure. It's probably an allergy of some kind but i'd want it looking at. Are there any other symptoms that go along with it concurrently - I get something that looks like the less red area occasionally, coincidentally always on my...

No worries it was prossibly a daft idea. Clutching at straws.

Ok so following on from my previous post here And now having caught up with what you said earlier @Barry & @Jonathan Edwards too.... here Barry responds to JE... I wonder... Do people think - & I ask this mainly of @Jonathan Edwards since he is likely to be the one answering most of the...

@youngscum I think essentially they will clutch at whatever straws they can to avoid paying out, so possibly they did use the "not under a fatigue clinic" thing, but that seems no reason to go to one, since they also find ways to deny those who do have the support of a clinic. And also if you...

Re the OP @Sarah94 Great idea :) FWIW thats the same for me... PEM & in fact ME in general has little in common with sleep deprivation for me. Sleep deprivation i experience as 'fatigue'... ME in general & particularly PEM feels like flu/virus/bacterial infection (without the sore...

That's not in the SCR. The SCR is the absolute basics so that if, eg, you were in an accident the treating Drs could see what medication you were already on. Or at least that's the idea. What the GP actually writes is held by the surgery afaik

I feel a bit bad for saying that now, perhaps I was being harsh my patience is thin today. I know she means well & the dramatic relief of her symptoms must be hard not to extrapolate from & enthuse about. But I don't think it's doing the rest of us much good.