New poor Guardian article "ME and the perils of internet activism" 28th July 2019

Hi. I can't remember when I submitted that comment...maybe October 2018?? Yes they tied themselves in knots with the answer...in fact I didn't really understand it. But I didn't have the energy to respond to ask for clarification. At that time I thought that the full review would be published. I submitted that comment about data because someone in the editorial unit told me it was pointless complaining that the authors of PACE were on the author team of the review because it wasn't against Cochrane's rules.

 

They're in a loop trying to save their latest dishonest statement with more dishonesty and it gets less believable every year. In their response to Wilshre et al, Sharpe was essentially claiming that they have found a method to eliminate the issue of biased reporting in questionnaire-based research. If they really had, they're in for a Nobel prize, but of course they don't, that's just another lie they made up on the spot. In the end it will destroy their credibility and reputation.

 

Might have been earlier than that - What's new and Version history suggests May 2018 or earlier, if that Feedback was your comment:



I guess they withdrew it because they couldn't simultaneously claim that the PACE data was unobtainable to the ICO (filing cabinet guarded by 3 leopards in a basement to which they had lost the key) and then miraculously available for their IPD review. Makes sense.

 

I suspect it was withdrawn because peer review comments were so damning. I presume that if they revised it they would have to resubmit to the same referees and certainly some of those indicated that the whole thing was substandard! Conflict of interest was also raised as an insuperable problem.

 

Blimey. Yes you're right. Doesn't time fly when you're enjoying yourself?!

 

http://www.virology.ws/2019/08/13/trial-by-error-a-stupid-article-in-the-guardian

 

Another tour de force.

It's nice to see comments now from people who I don't actually know (online). I hope the news of the real PACE debacle continues to reach new people and hopefully that will include more scientists who will now finally look at the published research.

 

You have to agree with the comment that we were doing just fine until the Americans interfered. Hysteria was kept under control. Sensible investigations were conducted. Then Eisenberg brought the good news from John Hopkins via Harvard to Oxford and impressed Goldberg and his acolytes by quoting the wrong statistics. The art of deference is well established in certain British circles - less so in others.

 

nice quote for tweeting etc

 

Another important and wonderful article correcting some media campaigners' spin -- thank you, @dave30th

Are you aware that you are not only "a man called David Tuller" but you also write for a "blog called Virology"?

It's specified as a "well-read blog" at least.

(Anyway, I like how you write about a trial--a trial called a piece of crap.)

 

I particularly like this paragraph:

 

I didn't think of Moby Dick, but it did remind me of this:



So I think "a man called David Tuller" actually sounds quite heroic ...

 

Dept of Psychiatry

 

@dave30th ?

 

Someone who carries all those initials after the MD, to me, is suspicious.

 

It's hilarious that the following description is apparently intended to raise eyebrows about David Tuller:

It reminds me of a line from an old episode of "Get Smart" in which Max is on trial...

Maxwell Smart : "Now it's easy for the prosecuting attorney to stand up here and accuse me of all these horrible crimes. It's easy for him... He's got proof!"

 

Or from Liar, liar:

"Objection!"
"On what grounds?"
"It's devastating to my case"

 

This just feels like such deja vu. I wonder when patients in general are going to get wise that we are in the political arena , not some pure scientific problem, that will be solved in a lab. I would love if the problem was that neat and that easily solvable but the problem is basically political economy. There’s not enough funding for biomedical research and there’s too much funding for crappy psych research. AIDS activists were not scientists but basically solved this problem by being much, much more aggressive than current ME advocacy groups are with their protests etc. they were perhaps simply less sicker than the average ME patient, but I have hard time believing this is impossible for us to replicate. ANs to think I see people calling for more civility on our side. AIDS isn’t an extremely treatable, almost trivial illness , when it used to be a death sentence, because of civility. And it’s not all due to the scientists either, although they should get credit. How can our scientists do anything without proper funding?

 

So the " HOME" study - no control group, and no doubt a variation on CBT improving cancer outcomes that has been around since time immemorial ( and has been debunked, I think, by Coyne)
How to milk mediocrity