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

[Luther Blissett]

No, DT is 100% right to expose this much used technique of ECs. I have met plenty of deeply manipulative people, and this is a standard trait. They state a partial truth, knowing that how they present it people will infer untruths from it. But they can and do honestly claim they never spoke an untruth, and think that's OK, and often carry their believers along with them.

This is important. It is one of the main ways propaganda works. The audience is led to a single conclusion, typically without it actually being stated, and left to make the final logical step for themselves, while being flattered along the way that they are making an objective independent assessment of the technical and ethical aspects of the 'argument' being presented.

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

 

[Esther12]

Isn't he just doing what I did on some thread before - saying 'This is true (technically); but it is also untrue' - pointing out that 'results' does not mean all the results.

I thought you were being a bit generous too!

No, DT is 100% right to expose this much used technique of ECs. I have met plenty of deeply manipulative people, and this is a standard trait. They state a partial truth, knowing that how they present it people will infer untruths from it. But they can and do honestly claim they never spoke an untruth, and think that's OK, and often carry their believers along with them.

DT very nicely exposes how she states her partial truth, but then he clarifies the rest of the truth that she o-so-conveniently overlooked to mention. She seems completely incapable of avoiding doing it.

DT doing this means people can see what she does, and really appreciate that carefully engineered partial truths are way out of line.

I've been going on about this for ages now.

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'.

 

[Valentijn]

"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).

 

[Amw66]

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'.

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

 

[Sean]

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.

As with PACE and their post-hoc revisions to outcome thresholds, the problem is not the use of alternative definitions and thresholds for outcome, it is the failure to also report the results of the original outcome protocol that is the problem.

Exploring alternative outcome definitions and thresholds is legit (within reason), as long as the original outcome is also reported.

If Crawley had published both sets of outcome results (original and revised) to allow a fair compare and contrast, she would have been safe.

But she didn't, and deserves to be hauled over the coals for it.

 

[large donner]

As with PACE and their post-hoc revisions to the outcome thresholds, the problem it is not the use of an alternative definitions and thresholds of outcome, it is the failure to also report the results of the original outcome protocol that is the problem.

Exploring alternative outcome thresholds and definitions is legit (within reason), as long as the original outcome is also reported.

If Crawley had published both sets of outcome results (original and revised) to allow a fair compare and contrast, she would have been safe.

But she didn't, and deserves hauled over the coals for it.

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.

 

[Sean]

Of course, none of this would be a problem, if the anonymised raw data was available for others to analyse.

 

[sb4]

I wouldn't, she should be prosecuted for the harm she has caused

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.

 

[Alvin]

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.

 

[Trish]

Sure there is blame to be shared, but EC is a senior paediatrician and University Professor and claims to be a world expert on CFS in children.

The buck stops with her. She cannot and should not hide behind others who developed the BPS idea before her. She has to take responsibility for her unscientific research methods and misdiagnoses and mistreatment of children.

There are certainly others who should be censured for allowing her to do that research in such an unscientific way - the funding and ethical oversight bodies, for example. But in the end it's down to her.

 

[Alvin]

Sure there is blame to be shared, but EC is a senior paediatrician and University Professor and claims to be a world expert on CFS in children.

The buck stops with her. She cannot and should not hide behind others who developed the BPS idea before her. She has to take responsibility for her unscientific research methods and misdiagnoses and mistreatment of children.

There are certainly others who should be censured for allowing her to do that research in such an unscientific way - the funding and ethical oversight bodies, for example. But in the end it's down to her.

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

 

[Art Vandelay]

"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."

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

 

[arewenearlythereyet]

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

 

[Barry]

I don't think they intend to give up, i suspect they will dig their heels in harder because they are married to their ridiculous beliefs. Once we have a disease mechanism science will stop believing them but i would be surprised if anything else will be enough.

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.

 

[Barry]

This is important. It is one of the main ways propaganda works. The audience is led to a single conclusion, typically without it actually being stated, and left to make the final logical step for themselves, while being flattered along the way that they are making an objective independent assessment of the technical and ethical aspects of the 'argument' being presented.

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

 

[Alvin]

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.

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.

 

[Barry]

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

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.

 

[Barry]

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'!

Professor Crawley also states that the change in the primary outcome measure was made before results were collected. This is true. But it is also true that the change was made after results were collected.

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:

That means that results were collected both before and after the primary measure change was made. Professor Crawley’s statement is accurate as far as it goes, but it is also incomplete and ambiguous and therefore highly misleading.

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.

 

[Peter T]

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?

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.

 

[sb4]

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.