Search results

You'd think RH must be getting the message by now. Skin must be so thick I can't imagine how there's room left for anything else.

How about striving for the truth, and the good science that goes along with that ... is that positive and empowering enough for these people I wonder?

[my bold] Don't know if the Mike was MS.

Let alone the hypocrisy.

Yep!

One day, when the science is understood, I would not be surprised if a subset of PwME have their problem rooted in allergies and food intolerances. My wife might well belong to such a subset. It is also possible that some strategies stumble upon something that works, even if the purported...

Just a thought, re cognitive tests. Any test that requires you to rapidly perform a physical action, no matter how apparently trivial, may (I'm guessing!) actually be measuring a composite of both cognitive function and physical fatigue.

Back to this again. This worries me Peter. Your comment suggests that when you speak of "reporting bias" you actually mean something very different to what everyone else means. You seem to be saying that the data itself does not hold any bias within it, that it is somehow pure and unbiased, "how...

I don't understand this. The "actual data" is in fact data that was acquired from self-reports, so any reporting bias will inescapably be intrinsic to it. "How it actually is" is simply how it was actually reported, incorporating any reporting bias that affected that data.

That is the nub of it surely. PACE purported to show them effective, and instead proved them ineffective. NICE CG53 has been perpetuated based on the former, and the new guideline must take much more heed of the latter. Do we need to confuse things beyond this.

Good to see you hear Peter, and you have certainly sparked off an interesting debate! :) I also am interested how "considerable actual improvements" can be claimed from the subjective outcomes measured. The objective measures showed negligible benefit, and there was no control for participants...

Can't help but be intrigued what you studied :).

Indeed. Two completely unrelated statements connected, by some perverse reasoning, with "therefore". Weird.

I really don't think they care a damn except for their own welfare. Despite their sanctimonious protestations, if they really cared for the welfare of PwME, then the ME/CFS world would be in a vastly better place today than it is.

I see where you are coming from, but suspect that NICE expect to see hard clinical evidence? (Despite the fact they have been fooled in the past into accepting deeply flawed pseudo-evidence). Don't really know, I'm far from expert here.

Only very quickly skimmed so far, but to me there would be no great surprise at all for a connection between ME/auto-immune/gut issues. My wife has the lot and I suspect is far from alone. Research into this area is very worthwhile I think.

I prefer to be kind. In this case I was simply being honest. :)

Absolutely. Transitions can be far from obvious when in the midst of.

Excellent. I love that statement Peter Gordon :). Because without transparency there can be no trust, and trust is what holds it all together, or should do.

I think lame outcomes often result from collective decisions where no one really knows what to do. Some want to still bury their heads in the sand and do nothing; others respond by saying you cannot do nothing; maybe some lone voice says they need to be honest and open (but maybe not). In the...