Discussion in 'General ME/CFS News' started by Andy, Nov 20, 2017.
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
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.
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.
Further information on PR including promise of a video. Sounds like the audience were sympathetic to EC, completely swallowing her version of events, seeing David as the bad guy. We have a long way to go.
Also revealing that EC has funding to do a bigger LP study.
Worth adding to the discussion on the Virology blog itself as well as here. Some good points being made (she says, having just made one ).
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.
As in, why do we need to understand self-serving willful misunderstanding of simple things as anything more than what it is?
Can't wait to see the video
She's adding lies on top of lies - cease and desist my arse
- what's she going to do get some old letters from Bristol and make another cut and paste job
As for funding no doubt coming from "the Parker Charitable Trust"
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!
But we should remember that Crawley is quick to attack work she does not agree with. I'm not sure what the 'soft' sciences are but I've seen vigourous debate between psychologists and economists. I think some academics feel threatened by questioning and transparency from those outside of their field. The great unwashed shouldn't comment on high thinking!
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 do think some people (including myself) think different amounts of criticism should be given according to the status of the person. So I think a senior academic such as a professor should be able to justify everything they do. But with a junior researcher or a PhD student I sometimes think strong criticism is not right as they have often been directed in an approach. Sometimes its better to have a quiet word suggesting other directions or literature they should also consider. Or criticize the senior person running the project instead.
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.
Separate names with a comma.