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Oh dear. Video on BBC news website this morning Long Covid: How knowledge of ME could help sufferers - BBC News Woman looking fabulous recommending that people 'be selfish' I mean i know what she's trying to say & that perhaps the editing has created something other that she'd have liked...

This

From the blog It would be more accurate to say that patients & professionals convinced NICE to look at the evidence for GET in an unbiased manner.... Evidence which they deemed to be - without exception - of either low or very low quality. Therefore NICE have no basis for recommending it. We...

This. From all the nonsense in her book TC seems to honestly believe that CFs = feeling very tired & sleepy, and a bit achy, and generally mentally & physically sluggish. Plus anxiety. It would be hysterical if it werent so catastrophically unfunny.

Indeed & the worst of it is that they kid themselves that they are the ones being supremely ethical & with our best interests at heart. They think they are my mother, whom when i was a toddler would rename vegetables that i said i didnt like (that she knew i did as i had eaten & enjoyed them...

Sci hub link not working - goes to a different study?

Hi @Natalie yes i have seen that and thought how wonderful it was, gorgeous drawing.

Cant wait to watch it. @Natalie these videos are amazing. Just to let you know that the severe ME one helped me recently in a discussion with my carer & to give to neighbours who were making too much sound. I'm sure you know they are helping people but just wanted to let you know they making a...

What a *$!!*@$! I'm pretty sure we could - lol maybe should - put together a list of idiotic, patronising and downright insulting/abusive things that Drs have said to us. Didn't we start a thread like that at some point i cant remember. Perhaps its the 'irritating things' thread.

i take occasional diphenhydramine & doxylamine succinate (both anti histamines) I find the latter almost miraculous & even the former will make me stay asleep at least 5-6hrs once i drop off. I took one on sat night as i'd been massively stressed hardly slept all wk & had something important to...

a great & hard won achievement well done & huge thanks

Exactly. They have spent the best part of 40yrs erroneously shaming PwME for supposedly wanting to 'adopt the sick role' for some kind of 'secondary gain'. I have seen that phrase or some version of it repeated scores of times in various articles, papers etc that the BPS proponents have...

All that quote says is that she wants to leave behind is the label of ME & the crap that goes with it. If they had asked the patient 'if you had MS would you feel the same?' Id be willing to bet she would say no.

very disappointing that even Maureen Hanson doesnt know that palpitations, tinnitus, chest pain, persistent cough, are not uncommon in ME :banghead: I know i have had them all since the original virus/infection that set mine off. Tinnitis & palpitations seem very common from my experience of...

Thinking of you all hoping the bits that unhelpful can be improved, gosh there's a lot going on at the moment!

I agree. I'd be flat out astonished if they werent.

Ok thanks @Trish huge thanks to all the committee & to everyone working on it, i am soooo glad to be part of a group that producing what i know will be a sensible, scientifically sound response. I always feel really proud to be an S4 member, but somehow that is esecially true atm. :)

Is there a time line for this more detailed than 'as soon as possible'? I know there is a deadline for submitting responses to NICE, but i have a really big unavoidable & non postpone-able thing i have to do regarding my own life circumstances this wk, so i wont be able to read any of it in...

My concerns in a nutshell. I do hope people are not being too triumphalistic on social media... it aint published yet.

Ahhh, i read that article 3 times never noticed her even being included never mind saying that sorry @Esther12 :oops: I am clearly too muzzy headed to even read sensibly i will crawl back under the bed :rolleyes::D