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Well done Trish & thank you. This letter is so good it could be used as a template for other letters/things. Nice one :):emoji_clap:

Eh? The definition of envy according to Collins is "Envy is the feeling you have when you wish you could have the same thing or quality that someone else has". Since when does it have anything to do with wanting to destroy that which is envied? that's something else. That's malice or whatever...

yes that line amused me too @Sarah94 … if only, right? This is the first study I've been hopeful about in a while, it might not uncover anything but at least it looks as though it might be run right. I hope it gets funded, what's the estimated cost?

Actually Wonko that's a really good idea. I don't have anything in the house that I detest, I actually cant think of anything I like most things, but I am going to try & see if I get the same improvement after eating something non enjoyable.

I find eating (whether i'm hungry or not) improves all my symptoms a little bit within about 5-10mins. it's short lived (lasts 15-30mins) but is surprisingly predictable, especially if I eat sugar. I've always suspected it of being a psychological/placebo thing for me, since I find food...

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...