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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 look for any harm on the assumption that harm is impossible. Vast portions of patients are lost to follow up and it is just assumed they are fine. No...

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 with the research. Probably one of those things which gets easier with practice. Many of the professionals will be used to making such points, and...

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 eventual outcome.

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. The interview isn't going to look you up to see what you've said or done previously.

Here is a newer version of it (not from 2015, but from this year): https://www.nice.org.uk/Media/Default/About/Who-we-are/Policies-and-procedures/recruitment-selection-to-advisory-bodies-policy.pdf

I understand that NICE have already rejected some patients because of their concerns over bias, because their views are already formed, right? Yet NICE let on Gabrielle Murphy on? She runs a clinic dishing out CBT and GET. She not only co-authored PACE, she led one of the arms of the trial. How...

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 situations where they're asked to support such a thing in future. Seems very naive. I'd hope organizations are more professional nowadays and would...

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 well to deliberately maneuver any discussion/narrative into that non-issue of physical or mental. We lose so much traction because of it and have for...

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 people want to help but don't know the lay of the land - virtually everyone new falls into this trap and it takes them years before they catch up and...

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 despite what CG claims that is what this decision is all about.

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 depends how well they read the realities of the situation and what the eventual outcomes of that might be. Inevitably, there are going to be some...

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 like that. Most of our gut flora is (or should be) other stuff that you can't get in a tablet or from a fermented food source, so at best any effect...

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. He will not be missed. Doubt he will stay out properly though.

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 meaning. Children are susceptible so if asked by an adult of course they are going to give the "right" answer. An animation is also likely to lead...

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 an answer, but if answering would look bad then it gets labeled as a loaded question or something similar. It's a public relations exercise.

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 clinical use are due to the treatments being delivered differently to how they do in the trials. It allows the researchers to disassociate themselves...

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 which may act on TNF-a. If my IBD got out of control I could end up on a monoclonal antibody for it but I haven't yet got bad enough. I suspect TNF-a...