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I have updated this to add that Cochrane has rejected S4ME's complaint. ADD: And COPE's letter to Cochrane.

Yes, and I'm interviewing both Betsy and Miles about the new publication on Monday...

My fault for scanning and not reading the whole thing carefully. He did explain a bit today, but I've removed the tweet.

one of them (Prins, 2001) claimed to use Fukuda but it is Fukuda "except for the requirement of having four out of eight other symptoms besides fatigue" (paraphrasing). So it was actually Oxford, not fukuda at all.

did D4 come under this? "bias in measurement of the outcome"? I'm not clear but they all had "some concerns" in that domain. In the text, they seem to justify it as an inherent limitation that's impossible to avoid.

yes, thanks, @cassava7--this is also a useful paper to counter the other paper that claimed to find no impact from this unblinded/subjective outcome combination in the results.

yes, it's hit a lull. that seems to happen every time.

I suppose if the complaint had been upheld, the continuing work on the process would have been for nothing? But staying silent for a year or two while it was being investigated internally seems a bit extreme. I'd certainly like to see the details of the complaint and how it was adjudicated.

I've written a lot about the Dutch studies. Starting with the 2011 comment from Knoop and Bleijenberg that accompanied the PACE trial report in the Lancet. They were doing awful work before that and then more afterwards. As were their colleagues. I'll try to look through and pick out the ones...

I'd be happy to touch base with him, if that would be helpful.--

in this context, "credit card" usually includes "debit card," as I understand it. although every country could be different. I also wish it accepted PayPal, but it doesn't. Berkeley contracts with a third-party for the template.

As always, my least favorite thing to do.

I agree with this. My use of "stupid" was a bit of hyperbole/exaggeration. I don't really think they thought patients were stupid. But they're suggesting the participants didn't buy into their ideas--hence, they're clueless or "stupid" to not understand what's in their best interests.

thanks for pointing out. I've corrected it.

Hi, I'm sorry--I shouldn't have been so categorical. I was thinking "not thought of as harmful among people in general for those who find those kinds of things helpful." I wasn't thinking specifically about patients, and should have been, given where I was writing it. thanks for making that point.

Since the initial stories, I haven't read/seen many reports either way--a few, I guess. Have there been lots of self-reports either way, for those who have been more focused on this issue? It still seems like a handful of personal stories.

Thanks for this. I realize that I have little authority/credibility to judge medical hypotheses and treatments as to whether they make sense from a pathophysiological or clinical perspective. I might have inclinations but they're not really based on much. But it is within my scope to be able to...

It's a good question, and without knowing more details I think it's not really possible to know. It's also very possible that people didn't really realize what they were getting into. Or it could be a mix of both. But it's really an own goal to suggest that people didn't have enough knowledge...

Many of the patients seem to have been recruited through psychosomatic therapists and not just their primary care doctors. I don't remember if they gave a breakdown of how many came from which sources.

good points! thanks for pointing this out. I read it as straining for an explanation. I can't remember another paper in which the authors have offered lack of participant understanding as a reason for a trial's failure to generate positive results. Since this was the entire premise of the trial...