Coyne on PACE Trial etc: UK expert: AIDS data should not be shared until requesters shown to be HIV-

[Dolphin]

UK expert: AIDS data should not be shared until requesters shown to be HIV-
March 9, 2016
James C Coyne authorship, data sharing, ME/CFS, media, PACE, peer review, PLOS One, post-publication peer review, Uncategorized Anna Sheridan Wood, HIV?AIDS, Richard Horton, spoiled identity, Stephen Lewandowsky, Wall Street Journal

https://jcoynester.wordpress.com/20...t-be-shared-until-requesters-shown-to-be-hiv/

 

[TiredSam]

Getting a bit tired of Coyne telling us what to think, he's so inconsistent I could find a limitless number of contradictions between what he preaches and what he practises, or even between what he preaches and what he has preached. Here's one:

He criticizes Lewandowsky for bringing the KKK and by implication black people into it, but then he uses Donald Trump and AIDS patients to illustrate his own points.

Another one - he quotes Lewandowsky:

However, given how quickly people can jump to conclusions when it serves their purposes, moderate critics of chronic-fatigue research—who exist as surely as there are people of faith who are not terrorists—ought to consider whether it might not be in their best interest to distance themselves from such rhetoric lest it impair their own credibility.

and then continues in the following sarcastic tone:

So, patients, if you want to avoid impairing your credibility” and gain access to data, you should distance yourself. Maybe under oath, assert, “I am not, and I have never been….”

Anyone remember who was telling "the community" to distance themselves from an advocate he didn't approve of less than 2 weeks ago - in fact a whole series of advocates he was blocking and encouraging others to shun on twitter?

Old news I know, but I just can't take the guy seriously any more. Great when his interests coincide with ours and he's on form, and nice of him to go on about Lewandowsky being an arse, which we already knew. But I'd be cautious about jumping on his bandwagon any more, even when it's apparently rolling in our direction. There are better places to hitch a ride. I'll just be giving him a cheery wave from a distance.

 

[Esther12]

Lewandowsky doesn't seem to be much of a 'details' guy, so I felt like the blog could be reading too much into what he's saying... tbh, I get the impression that Lewandowksy doesn't really know what he's saying. His confidence in his 'expertise' at detecting pseudoscience seems to have rather misguided him on CFS.

And the last couple of weeks do make this blog seem a bit weird. There were a few parts in that that left me thinking 'is this some sort of apology, or is it that Coyne sees no relationship between this and some of the things he did?'

I wonder if Lewandowsky did go into more detail with the reporter, but there wasn't room for it in the piece. Also - I hadn't seen patients criticising the article in the way Coyne seemed to imply had happened. I thought there was a pretty clear consensus of 'good, but disappointing it wasn't longer'. I wanted more Lewandowsky and Horton! Full transcripts please!!

PS Still a good blog, and the way some seem to shamelessly argue that prejudices against CFS patients are an acceptable reason to preventing access to medical data about their condition is sickening. I took that for granted, so only mentioned my criticisms.

 

[Yogi]

It is striking how the attitude to AIDS has changed. There was a time when AIDS was ignored and ridiculed just like ME is still.

I have watched 'How to survive a plague' after it being recommended here. Was an eye opener.

There is a video on Vanity Fair - 'When AIDS Was Funny' which I found very interesting after the Clinton comments on Nancy Reagan death.

http://www.vanityfair.com/news/2015/11/reagan-administration-response-to-aids-crisis

http://www.theguardian.com/us-news/2016/mar/11/hillary-clinton-comments-reagan-aids-crisis-backlash

 

[worldbackwards]

And the last couple of weeks do make this blog seem a bit weird. There were a few parts in that that left me thinking 'is this some sort of apology, or is it that Coyne sees no relationship between this and some of the things he did?'

There was a point where he was clearly trailing a blog in which he was going to tell everybody who disliked aspects of the NIH study how stupid they were, which he now seems to have backed off from. Instead we have this, a kind of 'business as usual. Oh, you remember me slagging off the entire ME community, oh that's just so yesterday..." sort of effort, which I suspect means that, having made some poor judgements, he hopes he can gloss over them as if nothing has happened.

As someone who has of long standing thought that he seems like a nice enough guy but isn't so useful as all that if he simply can't watch his mouth when he needs to, I don't really have any expectations of him. But I suspect those who were rather more attached to him would think that some sort of explanation was still in order, and I don't think they're going to get it.

 

[Valentijn]

There was a point where he was clearly trailing a blog in which he was going to tell everybody who disliked aspects of the NIH study how stupid they were, which he now seems to have backed off from.

To be fair, the patients railing against certain problems (primarily Walitt) were not expressing themselves well. They were largely bad-mouthing him in a vague manner, without explaining or citing their cause for concern - admittedly something difficult to do on twitter. And some were irrationally using it as a basis to call for cancelling the entire study.

I got a more reasonable response from Coyne when I explained Walitt's past research ... such as claiming that genetic expression results in patients' catastrophization about the presumably "normal" fibromyalgia symptoms.

I think Coyne over-reacted by going on the attack instead of digging deeper to see if there was some basis to the vaguer accusations. But in some ways I think his reaction is what we can expect from people who don't know anything about ME or psychosomatic theories and research, if we're not precise about our complaints and don't adequately explain or provide evidence to support those complaints.

Coyne was very vocal in expressing his rejection of those complaints, whereas most people would simply put us in the "crazy ME patient" pile and stop listening entirely.

 

[worldbackwards]

To be fair, the patients railing against certain problems (primarily Walitt) were not expressing themselves well. They were largely bad-mouthing him in a vague manner, without explaining or citing their cause for concern - admittedly something difficult to do on twitter. And some were irrationally using it as a basis to call for cancelling the entire study.

I got a more reasonable response from Coyne when I explained Walitt's past research ... such as claiming that genetic expression results in patients' catastrophization about the presumably "normal" fibromyalgia symptoms.

I think Coyne over-reacted by going on the attack instead of digging deeper to see if there was some basis to the vaguer accusations. But in some ways I think his reaction is what we can expect from people who don't know anything about ME or psychosomatic theories and research, if we're not precise about our complaints and don't adequately explain or provide evidence to support those complaints.

Coyne was very vocal in expressing his rejection of those complaints, whereas most people would simply put us in the "crazy ME patient" pile and stop listening entirely.

I don't have a problem with him criticising the idiot fringe, I'm fine with that. I have a problem with his inability to control his temper and act appropriately, and his belief that such rules don't apply to him.