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you dont happen to have a link to that slide/ presentation do you Bobbler?

I agree with all you say @Simbindi I am def going to try to respond.

thats good news, do you happen to remember the deadline off the top of your head?.. its online is it ?... like filling in a questionnaire online? or do you have to formulate a response entirely from scratch. pls feel free to ignore these questions if they taxing you Simbindi yes we did this...

what worries me in taking part in the consultation is that DWP might use it against me - like they use someone being able to fill out their own form against them. ie if you can spend 2 months doing a tiny bit at a time while inducing worse PEM, then they assume that means you can work - "filled...

This is very, very good advice, which i have not taken into account previously but i will definitely do so next time. Do you mind if i copy/print your post to put in my file to remind me when my review comes up? (I know this is a public thread but i like to be courteous :) )

This worries me a lot, because i'm pretty sure i been put in the SG on mobility grounds. I just did the B&W ESA test & despite scoring about 80 points over the rest of the test, w/o mobility & social i would end up in the WRAG. But i cant even manage day to day living, i havent seen my family or...

why is the picture of a little old lady in a w/chair?

You may well be right, i have had a major irritation creating day today so perhaps i need to be more gracious. actually one lady, a lovely person who is sympathetic to us, she heard it on UCB, said that she had remembered what i told her, but that she didnt recognise it from what was said at...

Its even made it onto Christian radio yesterday apparently (UCB radio) its amzing isnt it? at least 3 people have contacted me to tell me all about the Decode ME study because they heard/read about it in media. But they are all people who i told about the study myself.... For a lot o f people...

OMG @Arnie Pye that video is amazing i love to watch anything like that. warts, cyst removal etc. I even watch videos of jigger removal. If you dont know what that is look on youtube but not if you're squeamish lol

discounting the utterly infuriating 'CF' tag line throughout.... i do wish they'd stop freakin doing that! otherwise i thought is was quite good, and well done to the lass with ME who took part, she did well i thought

I sympathise. 30 yrs ago i had a large one it was 1cm in diameter (i think actually it was a cluster of them rather than one). And it HURT. Had another smaller one on other foot. I had them for many yrs. Had them burned out, frozen out, all sorts by GP/podiatrists, & tried all manner of gels &...

I find it so absurd that they think the psych part of BPS is being drifted away from. What planet are they living on? The psych part is the ONLY part that gets a look in! The bio and social are utterly ignored.

in your dreams

:laugh: Really?! Not in my experience there hasnt - quite the reverse!

yes but gaslighting isnt 'denying a persons experience', its messing with their heads in a way that is explicitly designed to get them to deny their own. (not suggesting you dont know that @rvallee , just pointing it out because that's iften how the term gets incorrectly used.)

i thought it was a good article, but... i do wish people would stop calling disbelief 'gaslighting'. Gaslighting is not the 'maddening feeling of being disbelieved', it is a form of psychological abuse designed to make the victim doubt their own experience, make them believe they are going...

just for the sake of accuracy... That was from the FINE trial (sister trial to PACE), it came years before SMILE. I dont have the quote evidence to put my hand on right now, but i'm certain it was from FINE - which was nurses trialling exercise on severely affected patients in their own homes.

yes, well, one wonders why a patient might be hostile or highly anxious... perhaps because it is inappropriate , nay abusive, to start asking people about whether they have a history of sexual abuse. Nobody should be asked about this - its none of their ruddy business to be 'eliciting it'...

@Chesley i hope you are alright. regardless of whether we agree with your ideas/campaign, you are a fellow sufferer and this must have been hugely stressful for you. Wishing you well