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You retired ;):whistle::D

indeed. But I still think this was really worth doing @Trish , and done very well too. Thank you! At least the reply takes what you've said seriously, and isn't a patronising dismissal. I don't hold out a great deal of hope for AfME tbh, but even if it only makes them consider your points as...

Perhaps asking the 25% Group? ... they might have based their name on something more concrete?

yes i'm afraid that is exactly where we've come to.

I don't like how in the article all the examples given are of kids starting off doing a tiny amount & then gradually able to do more. It just reinforces the expectation of some kind of 'natural' increase. As if ME/CFS were a form of convalescence. It happens with adults too. There doesn't seem...

Only skimmed some of this document cant manage the rest, but I thought this bit was interesting (especially the bit I've bolded), & one of the big reasons why its such a nightmare for ME/CFS to be subsumed under the MUS banner. It's the absolute worst thing for CYPwME but when drs are being...

:laugh::laugh::laugh:

attitude changed for the better or worse @Amw66

I do appreciate you sharing all your knowledge about all this with us @Simbindi You don't happen to know how I could find out what DWP tell their assessors/decision makers about specific conditions other than ME/CFS do you? Is there like an A-Z type guide or something or what?

Thanks Michiel please add my name to the list JemPD - member of S4ME & ME/CFS patient

I hope someone is going to flag this up to NICE?

I like mine quite weak & very milky - which I know is utter heresy lol. But I never drank it till I was about 30 because i'd never tried it anything but very strong builders & thought it was disgusting.... until I said yes to a cup just to be polite during a visit & was served a cup of what...

@Michiel Tack you are doing a fantastic job with all the summarising, it's beyond me, thank you so much for your efforts. Amen. Thank you LD for articulating my feelings on the matter so succinctly. Sometimes your turn of phrase really makes me laugh Barry, thanks for that:rofl: I've been...

Indeed. Or CF - which is what Logan refers to in the quote in the OP

I'll be very surprised if it doesn't go exactly the same way as the last one, but maybe appointing AfME or the Sussex society as 'patient input/consultation/liason', but with BPSers at the helm to mark their own work again. After all they all market themselves as experts in the field. I'd love...

Well I just put the kettle on...… :)

Who made the video I wonder it's the same one in both articles... it's not great. It's the only article I think I've ever seen though (I only read the Mirror one as that's what my family read so the Bristol one may not say it) that says that "symptoms can vary from day to day & even within a...

Yes there are a fair few disagreements over here about the history too @Wilhelmina Jenkins so you may well be right.

I'd not read that I don't think @obeat thanks it looks great & thks as always to the author too :)

Yes @MSEsperanza that is exactly the post I was thinking of! :) brilliant thanks. Precisely. It really strikes me as unhelpful when advocates/sufferers blog & promote things that can't be proven, all their hard work can so easily be turned against us. As I said in my earlier post all this...