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i recall there was a good reason for not sharing results.

My main issue with CBT is the premise that creates a hierarchy between thoughts, emotions & behaviour ie that cognitions are the top, the most important, because they are the root of feelings > which lead to behaviours > which leads to results... and around we go. But from my own experience i...

i agree that is the impression i have had as well. I wonder what actual use any of these conferences are tbh. Not necessarily IIME but generally. Perhaps i am just feeling negative, but over the last 20yrs there have been so many confrences/gatherings etc but little ever seems to come of them...

Is that new info since the white paper was announced Simbindi? At the time there was little info on what would happen to those of us currently on CB ESA only (so no IR ESA) & in the SG. Has that changed? so sorry if we have had this conversation before i am so terrified by it all i forget. ETA...

Gosh i hope they do, because so far that sounds like it has highlighted the horrors of the WCA, so the Govt can now say 'yes we realise it was not fit for purpose thats why were scrapping it. The fact that what they're planning to replace it with will be orders of magnitude worse, is the thing i...

@strategist you are so, so right!

Has anyone listened to it? Be interested in people's thoughts if you able/wanted to share. Particularly interested in the tone.

Really upset at Jeremy Vine. I darent watch it it will upset me too much, but i am shocked that he would do such a thing, i thought he was one of the good guys. I remember him handling the Gilderdale case with sensitivity & I think i even remember him saying that he had visited Lynn, or possibly...

i havent listened to the programme as i am too emotionally fragile to cope with the DWP 'in the room' atm. But... call me a cynic but the 'fit for work test' is the WCA, which the govt are scrapping - to the doom and persecution of those of us too ill to work. So it just strikes me that this...

Goodness thats awful! I was reading the comment 'when things go wrong' as meaning when mistakes are made - by said consultants, not when things are going wrong/are bad in the patients life/health separately. As its a paper about safety i was thinking 'when things go wrong' in the context of...

me too I dont want to be lumped together, we already got enough trouble being lumped into FND/MUS CF etc, i dont think helping them with that process will be good for us

I also thought of you straight away @Barry :) When i read the OP i went to tag you & saw you already seen it. I did wonder about 1 aspect in the chart though... where it says (under 'service users' section), that the doctors will know the patient well & know their families.... well, hmm, not so...

I'd be willing to bet that if they redid it now it'd be much worse. MUS, Functional etc etc etc

yes @NelliePledge I think its Forwars ME you mean? Its profoundly offensive. All i seem to say on this site recently is that 'i cried'. But i did. It just upsets me so much that these people are representing my (our) hard fought & lost battles, my robbed life that i fought so hard to keep, as...

You couldnt have IBS with a functional overlay because IBS is considered functional in & of itself. No need for an overlay. IT would have to be a dx of 'whatever-they-found-and-fixed', with a functional overlay'

from the review @DigitalDrifter quoted my bolding. Thats misleading, because it ignores the fact that once given an FND dx all testing & investigation will stop, & likely never occur again since Drs are discouraged from further testing for fear of indulging/reinforcing what they consider...

goodness the horrific suffering. To lose your children & then go to prison for killing them? Its indescribable, and all on the say so of one man. Roy Meadow. Knight of the realm. Its sickening. And the same man who came up with Munchausens By Proxy of which so many mothers of PwME are accused...

This is one of the things i find hardest to bear. I dont understand why i cant simply be taken at my word, i was really distressed the other day because it feels like no medic ever takes me at my word for anything, i always have to have a carer corroborate it, it really pisses me off. I have...

ah yes the ubiquitous 'idiopathic'. IYAM this often stems from lack of curiosity or resources to do sufficient exploratory testing, or even discussion. I can never quite get over the fact that the word starts with 'idio'... just sayin. I think that is the toughest thing of all for some of us...

I was actually going to say that Jeremy would have made mincemeat of the whole 'we know who's going to get LC' rubbish, but i didnt like to predict the opinionsof a man who's no longer with us. I must admit to fantasising about him going on a rant in support of PwME/LC, its certainly a rich pool...