Trial By Error: My Brief Encounter with Professor Crawley

http://www.virology.ws/2017/11/20/trial-by-error-my-brief-encounter-with-professor-crawley/

ETA

 

David Tuller, rock star!

I expect that as EC’s talk was on what’s new in pediatric ME/CFS, she mentioned the recent pediatric primer? No?

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer
Peter C. Rowe1, Rosemary A. Underhill2*, Kenneth J. Friedman3, Alan Gurwitt4, Marvin S. Medow5, Malcolm S. Schwartz6, Nigel Speight7, Julian M. Stewart8, Rosamund Vallings9 and Katherine S. Rowe
https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full

Also, I note that the Chronic Fatigue Syndrome wikipedia talk page had some stimulating discussion over the past few days, initiated from an IP address in Exeter.

 

Made my morning anyway!

 

Well looks like it's the same response to any critique of methodology or claims.

Ether Crawley just resorts to mud slinging and bullying her way out of answering polite questions.

Not much you can do with that unfortunately. Hopefully once NICE have rejected PACE fully we can have an enquiry That will give recommendations on how to avoid wasting public money on badly designed research in the future.

 

Remember leave to leave comments, information & links on the Virology blog.

Edit: David Tuller does take notice of your comments. Information I've passed on to him has featured in his blogs.

A large part of his work has come from facts & data pointed out by the patient community.

 

Done

 

We seem to be getting a confused and confusing message.

On the one hand we have the tales of the wish to emulate the heroic derring-do of her ancestors.

On the other we have someone apparently fearful of a civil question from an academic.

No Lysanders for her.

 

Code:

https://twitter.com/davidtuller1/status/932571631440007168

 

Judging from Country Girl's description of the audience, you suspect Phil Parker Ltd's mailing list are getting invites to EC's farewell tour.

"You will dü Esther...Look into my eyes, not around the eyes."

 

It really does seem to be the case that many of those in 'soft' science see debate, questioning and calls for transparency as 'harassment' and 'abuse'.

It baffles me, but I think that it is a culture we're going to need to try to understand.

 

@Esther12
Why?

As in, why do we need to understand self-serving willful misunderstanding of simple things as anything more than what it is?

 

It is so widespread amongst people with power and influence, and we need to win more of those people over if we want to make speedy progress. Also, I don't think that it's as simple as them just being calculatingly self-interested. I think that many of them have a genuine sense that they're in the right, and people like Tuller are behaving badly.

PS: Welcome to the forum!

 

I was thinking of the criticism of how people like Andrew Gelman have been critical of Amy Cuddy, eg: https://www.nytimes.com/2017/10/18/magazine/when-the-revolution-came-for-amy-cuddy.html

There, it almost seems like it was thought mean for high-thinking methodologists to criticise a mere researcher who was following 'the rules'.

It does seem that with the CFS stuff, and especially in the UK, there seems to be some snobby disgust at the idea that patients should be picking apart the work of mainstream researchers.

 

I agree that it's often better to start by criticising people in a gentle way, and to try to be as helpful as possible. I might try to do that regardless of status.

It can also be hard to know what 'status' someone has. What if a mere PhD student ends up becoming a media sensation based on spun junk-science and refuses to engage with their critics? Or someone with no research background who just has a big audience?

I think it's sensible to prioritise criticising the poor behaviour of those with the most power and influence... but I also know that I've spent plenty of time and effort criticising the arguments of random anonymous accounts on the internet. If someone is promoting unreasonable claims, or failing to properly defend their position, then I don't have a problem with relentless criticism of them for that, regardless of their status.

Having said that, as I age I'm feeling rather less relentless about these things myself. Hopefully a new generation will be rising up to relentlessly criticise me for all my errors!

 

Trouble is she is casts her spells to the already bewitched.