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mmm, on the surface it sure seems that way, but... backchannels. I'll believe it when i see it. I very much agree with @Trish & @Peter Trewhitt about the report/stories generally

well they're calling it graded activity not exercise, what more do you want? Surely that's all thats needed, just change the word and carry on as before :banghead:

I do wish researchers, biomedical as well as BPS, would stop declaring things 'have been shown' - as if its established scientific fact. Patients/advocates tend to unwittingly repeat such statements because they sound good but its so unhelpful if its not backed up by evidence

Indeed. Its amazing how obtuse they are, i mean truly staggering. Refusal to see that the NICE committee was actually heavily weighted towards his point of view, to the point that i was very worried that it would be a BPS whitewash, and yet STILL they found the evidence to be poor.

Really? Once again proving themselves to have no earthly idea what CFS actually is. Its not Tired All The Time. I'm getting increasingly irritated with these animal studies. There is no way to induce CFS there is no way to tell if an animal has it or not. It is cruelty for no good purpose...

yes i often wonder when he says these things what 'help' he thinks is going to be given with management He and Sean O'Neill very grateful to them

i thought that, but i just tried to leave a star rating without an actual worded review, (on another item i bought) to test if it was possible... it wouldnt let me do it kept highlighting that i needed to write a headline/review, wouldnt let me submit with just the star rating, so i dont know...

Its so demoralising, i just thought we were getting somewhere & now we have to put up with yet more lies & manipulation. When will we be free of this poisonous crap. Its the way it gets lapped up in such a credulous manner that makes me nauseated

yes & thats how its * suppsoesd to work here too. But the issue is that their point of view is that if the dx you have doesnt include symptoms of a spficic thing then they deem you cant have that difficulty. So if they believe ME doesnt affect your cog ability then you cant have difficulies...

thanks for those files @InitialConditions so helpful

Yes, i did. I never use the term brain fog except within discussions with other PwME - as short hand. I always use cog impairment, and did so in my PIP form and at assessment. But their response was to refuse to recognise it because 'you dont have a diagnosis of cognitive impairment'. They disnt...

Bless you both thank you :heart:

Merged thread Please help me find something in the NICE guideline Sorry but i just looked at all the NICE threads & my brain just swimming. Can somebody who's a bit more with-it please point me to the link for the published guideline. I want to fill in the red blank below, so i can quote...

Years ago i read the guidance that DWP/ATOS/Capita assessors are given about ME/CFS, but i cant find it now & it's likely out of date anyway. So does anyone have an updated (or even outdated) version (link etc please?) I'm asking because i've got a review coming up, & throughout the previous...

It sounds encouraging, i just hope & pray that the usual 'experts' ie Wessely et al, are not the ones called to sit at any round table (or calling themselves), thats a danger i'm concerned about. We need sensible people who understand the issues at that meeting, there's a danger it could be (at...

also here a link that i can read full version of original article Barry posted in OP from MEA website Sajid Javid promises radical action for patients debilitated by ME | News | The Times will delete if people cant access, i dont know why it workedfor me to read the full article i cant...

slightly different article but covers similar ground & reveals he has a relative with ME. This is the link provided by MEA facebook page & i can read the whole article paywall seems to be down Relative’s suffering triggered Sajid Javid’s ME crusade | The Times quote from Dr Shepherd from the...

I feel sick. The cruelty.

sure... but which ones plenty of "recovered" people waiting to tell about LP etc. It could be great, could be catastrophic

:heart: