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It's very hard to tell what's representative of most patients, since most do not share their perspectives. Most of the comments on Collins' NIH tweet were about increased funding. In terms of ICC and mold, I wouldn't say there is any "general view" but there is a committed core of those who feel...

yes.

Ha! It's Christmas Eve here. Anyway, I'm Jewish. Might even be a Christmas Day post!

I did use that term, although I think I was referring specifically to the constant peer-reviewing of each other. but it certainly applies in the larger context of the way things are structured to constantly reinforce, in their collective understanding, how great this research is.

what if they're left-handed?

well, in the PACE trial, when they wanted to obtain a "normal range," they used the formula for a normally distributed population even though they knew they were working with a set of values skewed toward the healthy end. And they knew specifically that this method would provided a distorted and...

One of the PACE participants I interviewed made this exact point--he increased his walking but did less of his other activities--he substituted or compensated one for the other. So he looked perhaps like a possible "success" but actually wasn't doing more overall.

Uh, oh! In my personal experience, men who refer to themselves as "alpha-males" seem more like beta-males to me. I don't personally know any actual apes.

I presume on the previous committee 10+ years ago, and in the NICE sub-groups assessing things in between, there were no people really in a position to argue forcefully against the serious flaws of these studies. That is not the case this time around. Also, I think the reputation of PACE and...

sounds comparable.

No what's that about?

yeah, this sounds ridiculous but of course is a real concern. The motives of the GET/CBT ideological brigades and their enablers at the SMC are unclear. Are they going to find a way to prescribe GET/CBT for this dysfunction or are they doing this because they recognize where things are going and...

where did he say this?

I think this is the question. I think all we know is that they have fatigue. So it seems like a nice "proof-of-concept" study--that a prolonged fatigue state can be induced by a short-term stimulus. That applies in broad terms to ME but not in specific ones so the claims being made seem way...

I would say that it might be an intelligent attempt to use interferon induced fatigue to inform general approaches to prolonged fatigue. I don't see why they automatically feel the need or the authority to draw specific comparisons with ME, other than in a highly speculative manner, since we...

Yes I noticed that. Interesting that it's not on their website. I wonder why that is?

It really is odd that these media outlets all covered it with that spin. it may or may not have anything to do with ME, for one reason given the vagueness of the resulting "fatigue" state the study seems to be discussing.

Do we know that SMC promoted it?

That sounds like what he presented at CMRC, or certainly a variation of it.

Yes, in the comparison arms the rate of "improvement" was about 45%, so there was a marginal 15 % improvement for CBT/GET. When "improvement" dropped to around 20 %, the comparison arms had around 10%.