David Tuller: Trial By Error: Professor Crawley’s Bogus BuzzFeed Claims - 17th January 2018

Very important observations. It is also commonly used to provide plausible deniability.

 

I thought you were being a bit generous too!

I agree with that. It was just the 'this is true' bit I thought was a bit generous. Maybe I'm just more demanding for the word 'true'!

re changing the outcome because of feedback from teenage participants: I don't think that this is necessarily unreasonable. It's quite possible that a middle-aged researcher would chose an outcome that teenagers did not particularly value or care about. I can see that teenagers with CFS would often care more about their overall physical functioning than mere school attendance. They may even have worthwhile views about the dangers of response bias in nonblinded trials for an intervention like LP? But did Crawley ask them about that? Did Crawley and her team explain any of the problems with changing to the SF36-PF to trial participants? There was no mention of a discussion of these issues in the feasibility study paper. It would be easy for researchers to manipulate their participants, and then present their own preferences as being 'patient led'.

 

"The study participants didn't like the scientific method, so I stopped using it. Instead, they wanted to tell me what they felt the results should be, so that's what I wrote down and published instead of the real results."

If it were true, it would be absurd. But I have no doubt it's just Esther Crawley lying with wild abandon by passing the blame to her patients (again).

 

Given the age of the participants, was this discussed and agreed with the parents too? Where do the parameters for information sharing and consent stand?
There were problems with the scale too as it did not relate to teenage activities.
Given the amount of research that has recently been done in the paediatric group it' s difficult to comprehend using measures designed for adults ( particularly when we are constantly advised that paediatric CFS/ ME is not the same)
Apologies if i' m not keeping up with things

 

This is true because if she claimed they decided not to use school attendance as an outcome because attendance improvement doesn't necessarily prove reduced disability that may only be useful if she is not hiding reduced attendance overall or no change in attendance.

Reduced or no change in attendance during treatment may imply one thing as opposed to improved attendance potentially supporting another conclusion.

 

I don't think she should. This is caused by multiple systemic fuck ups not entirely EC. Who are the people that sit in the institutions that determine the mainstream science position on ME? Who are the people that advise the NHS that CFS is psychological and should be treated with CBT?

There is a lot of blame to be shared out and the people in those positions should have looked at ECs work, and opposing theories and seen through some of ECs claims. Of course ECs going to big up her work. It is the responsibilities of people in these positions to see through it.

 

She intentionally harms children by believing lies, maligns patients who beg for help and uses her authority to take people away from their families by force by claiming its in their best interests, this in my mind should equal criminal charges. I don't care how systemic it is, the truth is readily available for anyone who wants to listen, she ignores reality, substitutes her own, fakes research and resists progress. She is not the victim, she is a perpetrator. No one forces her to do these despicable things, she chooses to do them, covers her eyes to the harm she does and the evidence against it she is bombarded with.

 

Basically this, all those who resist knowledge, fight progress and fake their results in ME/CFS treatment should face sanction

 

"And then my dog ate all the raw data so unfortunately I can't share it with anyone."

 

Ahh ...so the reason her experiments are so wrong is because she let the kids design them?

 

Of course they will not give up on their stupid BSP'isation of ME. But that won't stop them ditching EC if they feel they are getting dragged down with her. In truth she is showing even them up, which takes a bit of doing.

 

Bang on. Fundamental bit of human psychology ... oh ... wait a minute ... EC is into psychology isn't she?

 

True enough, no honour among thieves, but in the here and now there is unknown etiology and psychosomatic bullshit, when there is known testable etiology they will fall from influence (in ME/CFS) no matter what they chose to believe.

 

Again bang on. But the trick these folks miss is that their deniability only remains plausible provided they don't make a habit of it, and show repeated instances of their behaviour forming a tell-tale pattern. And these folk are plastering their stuff all over the internet, leaving a beautiful audit trail of their incessant goings on.

 

I do agree, on reflection, that it might have been a little clearer if DT had said "this is partially true"; at least he's human. But in the very next paragraph he clarifies with:

But I think DT has done a fabulous job of work here, as always, and I doubt there is anything anyone does that, if someone is pedantic enough, won't find something that is slightly awry.

 

Esther Crawley was one of the people who wrote the current discredited NICE guidelines that set current practice in the UK and allows her to inflict CBT and GET on children and adolescents in her clinic. She is part of the establishment that has permitted this medical abuse.

 

Yeah I'm not defending EC at all, I think she is an example of everything wrong with science. I am just saying that he system that allowed her views to become mainstream is the real problem.

We really need to look at why scientific ideas that are wrong, can easily become entrenched in mainstream scientific wisdom. I see this problem not only in CFS but in saturated fat, dangers of electromagnetic fields, how water works, sun-light, supposed healthy polyunsaturated fats, and many other areas.

We need more safeguards that prevent wrong ideas becoming entrenched. Hell, even ideas that turn out to be right shouldn't be entrenched such that it becomes almost impossible to challenge.