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It could also be a question with a very obscure answer.

Yes. I'm getting the impression he is primarily interested in standing up for good science, and those who promote/encourage it, without fear or favour.

It really does make you wonder: What is the hold that the BPS brigade have over these people?

I like that :)

Pretty sure Charles Shepherd spoke of this.

I fully agree of course with including all relevant objective data. But are we shooting ourselves in the foot if we insist on removing all subjective data? Hasn't our argument with PACE been that unblinded trials with subjective outcomes are OK provided you back up the subjective evidence with...

Interesting. Because my wife, like so many with ME I think, has always been someone who pushes herself through any bugs she catches, and without being clairvoyant, and without having very savvy medical advice, would have no way of knowing 'this' bug is the one to not do that with, else you may...

Presumably if there is no evidence of real benefit, and no real understanding of illness definition, but at the same time strong indications that some people within the broad definition are likely being harmed by a treatment, it doesn't really matter that you don't know which sub-group(s) are...

I'm intrigued by the idea of reaction time being used as an indicator of cognitive fatigue - just feels like a valid correlation. Certainly it's recognised that driving when mentally fatigued impairs reaction times. Have any such studies been done for PwME? And it's easy to measure, with a bit...

Yep. Complexity breeds confusion which leads to cock-up.

Finally got round to watching this @Graham. Really is very good. Love the way it gives real insight into how PACE was simply a dressed up exercise in how to influence the filling in of questionnaires, and in turn dressing that up to give the impression of real improvement when there was none. I...

I have just emailed my wife's and my thanks to our MP. I have included a link to this thread, given it is publicly visible. My gut feeling is that kind of openness might help build better trust.

I think from my wife's and my meeting with our MP, which we feel went well, these are some pointers of what I think we did right: Some preparation is vital, but the initial stumbling block is what form should it take. Read on ... I think a good question to ask yourself is "What do I want to...

Indeed one of the initial objectives probably needs to be to not kill your chances of raising something else another day. Which I think means to try and help people understand, and want to understand.

That's nice to know :).

Yes, this really struck home with me at our meeting, and made me think I may just have been slightly unfair previously. My wife and I really felt he was genuinely pleased with the chance to be enlightened on the issues, and tht we did it in a strongly positive but non-confrontational way...

I'll hopefully be able to follow up on this later this evening. Bear in mind I'll not be presuming to do a "though shalt" doctrine, but simply expanding a bit on the rationale behind how we went about our MP meeting. Including my own feelings on what I think was a good approach, for others to...

Out of time for a moment but will revisit.

This thread was created by moving posts from this thread. Several posts suggesting and agreeing to the move have been deleted or edited. My wife and I did in fact attend one of our MP's surgery appointments today. We had been allocated 10 mins and were in there more like 25 mins. Our MP is a...

"Science is operating as it should, self-critical and open to revision" ... Oh, that's good ... I must have missed something :rolleyes:.