Search results

Do you really think so? I hope you're right, but i have difficultly imagining that they're following that, or indeed very much regarding ME/CFS. It seems this withdrawl is a direct result of direct contact with them. I'd be amazed if they even knew about what MS/EC was doing. I cant help but...

I am such a cynic, this withdrawl feels too good to be true, like they have withdrawn it just to placate people & then will make no changes & release it again with the line "you can all shut up criticising now - we have reviewd it as asked to do, & our questions have been answered to our...

It seems to me that this might be even more important than who is on the committee?

Was 2007 a 'review'? I thought that's when they were first developed ie the very first guideline that NICE did for CFS/ME? Am i mistaken? I wasnt saying that PACE didnt influence things, or that NICE wasn't privately told that it would back up what it was planning to recommend. Only that...

Thanks for that @Sly Saint. Happy to be corrected. But I meant the first 'proper'/full review. I thought the decision in 2011 was that they looked at the issue & decided than no 'proper' review was needed- ie PACE influenced them to determine that no review needed to be made, and to keep them in...

Indeed. I think the placebo brigade are just a section of the MUS brigade really though. Placebo is just a large part of MUS theory in reverse after all - a glorified nocebo effect if you will. Interesting that the wiki nocebo page https://en.wikipedia.org/wiki/Nocebo says "placebo & nocebo can...

Me too.

A great blog post, but i do wish people would stop with the factual error of stating that the NICE guideline was based on the results of the PACE trial. It was not. It might be pedantic when it was based on the same treatments from the same authors, but NICE came out in 2007, PACE not till 4yrs...

Crikey i had no idea he'd done that & nobody had stood up & challenged him on it. What a betrayal from our charity reps. Indeed it is not, & its very telling that the Holgate's of this world think that people who know less about ME/CFS & the science around it, than your average S4ME member, are...

I had IBS for 7 yrs before ME hit. It was/is unpleasant with very painful diarrhoea & stomach cramps. It was miserable but I lived a very full life & it rarely interfered with anything i wanted to do except for having to make sure i knew where all the toilets were & having to pretend i wasn't in...

Absolutely. Perhaps she feels her time is better spent pushing forward rather than breaking to write papers/ get published. Not being a researcher i don't know. But actually my quality of life would be hugely improved by not having to be afraid of visiting the GP for fear of being coerced into...

precisely! yes Barry thats what i thought. what seems unclear is whether he is meaning a victim of patients etc, or a victim with them.... either way its spurious

Will it be able to be included in the NICE review?

SH's 'over the shoulder' comment made me feel really uncomfortable, it's a bit creepy & manipulative iyam. It feels like he's either perpetuating the 'harassment from patients' meme, or trying to insinuate himself as if he's been on our side all along & is a partial victim alongside us, when in...

@dave30th you make me so happy every time you speak. I just start smiling at the sound of your voice, and it's the same when I start reading anything you've written. You and your work are an absolute tonic & I am just so so glad you're on our side. I actually get a lump in my throat sometimes...

This is truly excellent. I not managed to read all of it yet but impressed with what i've seen. Many thanks to Vink & Vink-Niese

@Mark Vink you might like to read the very warm reception to this paper on this thread :) https://www.s4me.info/threads/graded-exercise-therapy-for-me-cfs-is-not-effective-and-unsafe-re-analysis-of-a-cochrane-review-2018-health-psychology-vink.6097/

actually no, good point. perhaps the thread would be better deleted but i dont know how to do that.

it'll be lovely wont it. 15 people in a room - 4 with mild ME/CFS, 10 with CF all chatting together & 1 with moderate end of severe ME almost collapsing off their chair with the effort of holding themselves upright & the sensory overload of people talking.... "I find yoga helps me" "you just...

yes i actually didn't notice that. I thought i'd clicked on all the links, but actually It also links to an article about 'attitude' on the rehabilitation link. There is a totally inappropriate & frustrating TATT link too. I obviously didn't check the links very thoroughly the first time around...