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https://www.cochrane.org/about-us/governance-and-management Can someone provide a brief explanation as to the responsibilities of the various layers of management? I presume the 'power struggle' is at the board level. Also, is there an alternative organisation in competition with the Cochrane...

Yes, sadly this is a difficulty that doesn't have any clear way of approaching a solution. I am wondering if the facebook group continues to grow in number or is this pretty stagnant? And is being on facebook as opposed to an independent website possibly a drawback. Apart from myself I have...

Well, one thing most gov'ts don't like is bad press. If we could get some of those points into a national news article it would be a start toward the gov't thinking that maybe they should pay attention. It would of course take a little more than one article but I'm pointing out were their...

Can you articulate some of your misgivings of the discussion Diluted-biscuit?

Ah, I have been resisting facebook but have periodically been aware that I am missing things by doing so. Will reevaluate if resisting FB is futile. :D

Well good luck to them. Though in truth it sounds a lot like management at a coal plant being designated as the arbiters of what quality breathable air might be like. ETA: If only there were the equivalent of effective gas masks for crappy psych trials. Some of them have been pretty whiffy to...

The focus here is on science but advocacy extends beyond that. And I like to think that advocacy is definitely part of the site too. I agree that as human beings while it would be great if the facts were always the deciding factor in others views, reason only gets us so far. There are those...

Yes, I understand the hesitation. I have been to sites that 'rate' Dr's for eg. And in my n=1 case I have a GP who no doubt is caring and good at his job when it comes to 'regular' health issues. He goes the distance. But he is a horrible Dr for me unwilling/unable to take the time or to...

Yes, does anybody have the citation and quote relating to this view that online communication encourages people to think they are sick?

It does make you wonder. What are they all so worried about?

Thank you @rvallee and @ScottTriGuy both for taking the time to write these letters on our behalf. It is discouraging but I think it is also to be expected. As has been said on another thread (by Barry IIRC) it is a long distance run (paraphrasing) in that the relationship requires further...

This group of researchers has learned from the exposure PACE has gotten I'm sure. I expect that there will be some fuzziness around the initial choice of co-hort (how they qualify). It would be interesting to know if some parents tried to sign up their child for the trial but were rejected...

Great article.

As do I. Although I have moments of doubt as to whether that will ever be achieved. And meanwhile it would benefit new people to have a resource where they can evaluate (if only a part of their full evaluation of their own specific needs) the various institutions offering treatment. As...

Perhaps we might consider a system of evaluation that is not so open-ended but asks carefully worded questions meant to elicit specific neutral ie factual information. A caveat at the beginning can express the intent of the thread and provide guidance and a warning that any info that strays into...

@ScottTriGuy Couldn't find a specific email address either, only this general enquiry email: https://www.ndcn.ox.ac.uk/about/contact-us

I would guess Mayo are less influenced by PACE and more influenced by the work of Jon Kabat Zinn. JKZ did some work on the Tibetan Monk Matthieu Ricard that paved the way for the belief in mind over bodily control. The work was interesting but I think the conclusions have been way overstated...

I'm not sure I agree with this part of the statement though. It doesn't really change the overall point you make but while it does externalize the agency I think that people probably still tend to think that maybe they could have done something differently at the time to effect a different...

Yes, it's never stops being amazing how we humans can have such a strong attachment to the psyche creating our illness. I know some of the reasons even. There is no evidence against any of these explanations. This seems to make them quite compelling even as the opposite is true (no evidence...

If I understand correctly, the kefir mentioned was made with raw milk. I have no opinion one way or another but could it not potentially be something in the raw milk as likely as it could be that it was made into kefir?