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https://www.thecanary.co/discovery/analysis-discovery/2018/03/22/the-mainstream-medical-community-just-declared-war-on-people-living-with-me/ I like the Canary because i like the 'call it out' attitude, but i do wish they wouldnt make such basic factual errors as calling it the 'PACE trials' -...

Actually i was just thinkin that i think i did say similar kinds of thing back in year 2-3 of being ill. Dont think i ever used the word 'gift' but i felt i'd learned a lot about myself & grown alot, and was convinced that - somehow - i would improve over time. I think it depends a lot on how...

that was my feeling entirely @Revel ..... in my mind it wnet along the lines of "yeah well, tell me that again in 20yrs"

:D lol brain fog obv meant coup :confused: will edit

Ugh, as i checked the headlines this morning i was greeted by a large photo of Prof Sir Simon smiling with Kate.... right above an article declaring that "Gps too soft on back pain", bemoaning the painkillers & surgery given out, when really pwback pain need psychosocial treatments of therapy &...

Haha YES! that is exactly what i was thinking of thank you :) I did search the forum but i obviously didnt use the right search terms. I never have much luck with that :confused:

brilliant, it'll take me some time to read that but it looks like a useful article thanks Dolphin :)

Re the 'low impact journal' bit, I'm sure i read an article not long ago about journal prestige not being linked to research quality. but i cant find it. Cant anyone else recall it? This one is old & i cant read the full article w/out a subscription, but the recent article was along the same...

@Robert 1973 you are a legend :D

Well i assume the 'trial design specialists' would include Wessely & his co author, they wrote a book on 'clinical trials in psychiatry or something. Although whenever I've seen him talk about that book he always says "i wrote a book" rather than that he co authored it. Clearly considers himself...

Thanks so much @Esther12 I've read that paper but there are so many brilliant papers about PACE i get muddled which one is which

does anyone know where that graph that Anton Meyer tweeted, came from? I'd love to print it out (inc the references) & use it to give to a HP i know

@Londinium you have articulated my point of view beautifully thank you :) I long for the ability to be so succinct. Yes I agree, however.... What @Nasim Marie Jafry says is spot on imho. I'm very happy to cut everyone slack, i need lots of it myself. So wouldnt have dreamed of commenting if...

Goodness does she really think that? Crumbs no!:eek: He will just take whatever she says & twist it for his own purposes. yes a total fantasy. I sometimes wonder if she's aware of the way some of the things she does can be twisted to appear to bolster the BPS ideas.... like pitching a tent in...

Interesting @Cinders66 thanks for that info i was still fairly new to the field back then. Yes thank you indeed @Jonathan Edwards, what can we do to help?

my bold yeah I think i'm getting it, so people going on to NICE and to anywhere else about other options for treatment is actually likely counterproductive? We can point out the other evidence suggestive of possible organic pathology but we need to steer clear of talking about any evidence for...

yes ah ok i see, in broader terms what can be done about this do you think? I mean by us (pwme/advocates etc), - is there any way for us to affect change is that area? It feels like that' might be a possibly more effective strategy than merely trying to go after PACE itself for retraction, since...

This thread is so interesting. But sad to read of all your difficulties @Wonko, that stinks. I cant go out alone ever because it's so unsafe for me, even with good pacing i still regularly crash unexpectedly & suddenly, & then I cant hold myself upright in a chair, & get very confused &...

I'm finding your posts on this thread encouraging @Jonathan Edwards :) I also wonder.. Like PACE? Or was that of a high enough standard in the protocol? before they dropped the objective outcome measures & lowered the thresholds? I feel personally certain that this is part of the problem. I...

Gosh @Graham, the Gibson report! i forgot all about that. I thought that would really make a difference. Ugh countless times i thought, 'oh we're really going to get somewhere now' the tide is turning, in fact all that's happened is a ruddy tsunami coming into shore instead. I'm encouraged by...