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graded exposure is so insulting. as if we havent tried it ourseleves and in any case, i dont know about you but it works the opposite way- when i well rested and been in silence i can tolerate quite a lot of stimulation & enjoy it. but as i begin to 'tire' it becomes more & more overwhelming...

Yes i saw that too @John Mac , but its unclear whether the work placements are for people on the equivalent of what used to be jobseekers allowance, ie, simply unemployed - what we used to cal 'on the dole', or if it means all of us?

Ooo, that looks a great thing to investigate, the idea resonates with my experience. I hope the methodology will be good so results can be useful/reliable

Yes its incrdible how easy and well thought out it was to participate, & how patient voices were really listened to in the design & all the way through. A fantastic job, especially given the size/numbers. :emoji_clap::emoji_clap::emoji_clap::emoji_clap::emoji_trophy::emoji_dart:

Wow, a memorable occasion. Thank you to all the amazing team, and to everyone who's taken part. Am itching to find out what the total number of participent ended up being. I imagine we wont know that until after all the spit kits are returned at end of Jan. I do worry we wont have enough...

I was listening to Jamie Lee Curtis talking about addiction today, I'm paraphrasing, but when asked what she would want to tell her younger self at the start of her journey to sobriety, she said well theres nothing because you cant hear anything you're not ready to hear, if you're not ready to...

I am desperately upset that i wasnt able to respond to the consultation. I was planning not just to respond but to send links etc to ask others to respond, but mid september i had to travel for a medical test which involved a totally inappropiate (for PwME) exercises but which was absolutely...

well i'm glad you've said that because i found it so. They talk about plans to scrap the LCWRA & ESA support groups altogether, but i thought the consultation was about changes to the criteria to ensure far fewer people would get into those groups, not that the groups would be scrapped...

Actually I wonder if it wasnt a blessing in disguise to go silent. Because although the wait has been awful, at least it makes it more difficult for the BPSers to say that the complaint response was influence by 'ME activists', because nobody knew!

Have we seen a rebuttal from NICE to this yet?

ok so from the tweet 'the pain is real but the body is not damaged'. But the approach not intended to treat conditions where there is a test t show that the body IS damaged. So we are back to the idea that if the basic tests dont show damage that must mean there isnt any. So its not possible...

As always, its my honour and joy to contribute

Me too! TBH i (stupidly) never think about people on Caribbean Islands having ME, it just shows you how far the reach goes. I mean i theoretically knew that it was all around the world, but somehow this brings it home to me - the breadth of it.

loving the use of the past tense there PEter :D :D

Since verrucas are caused by viruses, one wonders by what mechanism covering it with duct tape can work? Not saying it doesnt, just wondering.

I certainly agree @Creekside that big pharma is missing a trick. If they could develop a pill to effectively get rid of 'sickness behaviour' symptoms they would be onto a billion dollar profit This must be a stupid question because surely someone must have thought of it, but since certainly...

yes agreed thats why i going to try respond too.

I'm really sorry to tell you this, but i'm afraid these plans are far from 'suggestions'... its the plan. And making it so that none of those areas could score 15 points, means no one who got into the LCWRA or Support group on those descriptors, will qualify in future, meaning that we will be...

yes i'm afraid its very bad indeed Luna, they also plan to remove the 'engaging with people' descriptor' if you go to the benefits and work website, or look up higher in this thread (Simbindi's posts mainly) you can see links to details and how you can respond to the consultation. sorry i dont...

:laugh: thats hysterical