Why not have a selection panel made up of patients?
This is something I very much hope gets pushed for. It's a complete joke at the moment, they say it is safe but there is no process in place to...
One of the key factors will be how well informed the patient reps are at analyzing research and how practiced they are at conveying the problems...
Cool. Would love to see such an analysis of CFS research.
And we'd be holding that mirror up. In public. We aren't going away, the review doesn't magically start looking sound so there is only one...
My interpretation, which may well be wrong, is that as long as you keep your views to yourself in the interview you're assumed not to have any....
Here is a newer version of it (not from 2015, but from this year):...
I understand that NICE have already rejected some patients because of their concerns over bias, because their views are already formed, right?...
Well done JtJ. Nothing shocking in that letter but hopefully a lesson for AfME and other organizations not to be so willing and trusting in...
Totally agree, unfortunately that's exactly the mistake people make over and over, and it's very easy for opponents to encourage them into it as...
In my view, this issue is one of the very first issues that should be explained to new people who are introduced to the world of ME/CFS. Often new...
Well she would say that, wouldn't she. Well done to all the so called activists who pointed out all the scientific problems with Cochrane because...
My view is that NICE have been trying to get it right recently. I'm not sure they will achieve enough to satisfy patients sufficiently though, it...
The probiotics available to buy are only lactic acid bacteria that make up just a tiny portion of our overall natural gut flora, 3 or 4% something...
More like since his ME/CFS research got exposed as total crap he can't get any other sap to pay him more money to come up with more of the same....
What a load of crap. A child is not in a position to effectively judge safety, trust, risk, data etc. so whatever answer they give has no...
hope he wins but hard to tell how strong his case is without knowing the details.
Yep, it's just like the official PACE FAQs he and his colleagues put together. If the questions are easy or innocuous then they get validated with...
What he's saying is a longstanding defense by these researchers that the trials show the treatments are safe and that any harms that may happen in...
My TNF-a was very high when I saw KDM years ago. That was before I had IBD. It was still high once I developed IBD. I take mesalazine for the IBD...
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