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it's easy to just file a FOI with the local research ethics authority or the national overseeing body. no need to ask the researchers directly. I mean, you can if you want. or do both simultaneously.

I have a hard time with "catastrophizing"--the assumption is that the more you worry, the more screwed up you are. but if you have an unidentified organic illness, of course you'll worry but you'll be categorized as "catastrophizing." Catastrophizing only makes sense for something known 100% to...

Yes, I'm so used to editors doing that I didn't notice at first. It's an understandable and inadverent mistake from the copy editor/design folks who have no reason to know that CF should not be used as shorthand for CFS.

Not having the notice visible or somewhere else reminds me of when I rented a house for the weekend with friends. We used the napkins from the drawer but didn't notice until the last day the notice UNDER all the napkins saying, "Please don't use these napkins."

got it! thanks.

I think of it along the lines of the Streisand Effect. https://en.wikipedia.org/wiki/Streisand_effect

True, but MS did block me, and as I found out when he left a comment on VB, he still reads what I write!! But the fact is, I can scream all I want, and the entire Berkeley faculty can scream, and Keith G and Tom K and Brian Hughes and 100+ experts can scream in a letter to The Lancet, and no one...

Thanks. I get nervous every time, particularly because I don't like asking patients to cover what should be covered in other forms of funding. But it seems to work out each time anyway. No one should be spending any time fretting about it but me.

Well, I think the word "hopefully" is doing a lot of the work in that sentence!

Maybe I should look at it again along with all the other things.

well this is definitely true. It's cult-like behavior, essentially, or like dogmatic ideological beliefs.

Yes. At the time, I never wrote a thorough rebuttal of why the HRA report said nothing about the substantive problems with PACE. It was essentially a whitewash.

This is definitely how I feel. His behavior is hard to understand, and it is hard to understand why no one is reining him in.

I'm confused. Which report are they waiting for?

Oops! Can't be fixed now.

Jo, I have to say these are really rather extreme examples! I have found psychotherapy to be beneficial, but whether it's because I want to believe that or it really was, who knows? If it helped, I don't know if it was because of "therapy" or just because I met with kind, smart people who...

Some people really get bugged by this. I wish they didn't send the e-mails after the crowdfunding period.

True. they're using the term as a carry-over from the supposed "benefits" over SMC found at 12 weeks. So since the term at 12 weeks meant "benefits over SMC" it would be untrue to say those same "benefits" are sustained, since they're not. I've been planning to write to the editor, given his...

If you define the important comparison as the "within-group" one, then I guess it makes sense to say the "benefits" were sustained. But of course it's conflating the general meaning of 'benefits" and what is meant in a clinical trial, which is "benefits over the comparison group." So it's using...

The template isn't great. For example, it doesn't allow me to take all previous donors and send a current update. The update headline is always for the past crowdfunder. And so on. Maybe I should add newer links to the actual appeal itself. Good idea.