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

sb4 said:
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.
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I think you're absolutely right, critical reviews of various systems and then safeguards are essential to stopping a repeat of the whole ME situation.

But first the medical and research establishment would have to acknowledge there is something seriously wrong, something which they would find very difficult to admit and accept I suspect.
 
Esther12 said:
re changing the outcome because of feedback from teenage participants: I don't think that this is necessarily unreasonable.
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One of the points about doing a feasibility study would be to look at measurements. But feedback from the paticipants should just be one part of that. She should have been looking at do the measurements represent reality. Then using that information a fresh trial should be constructed - the real issue is that she converted the trial from a feasibility study to a full trial with a redesign part way through.

I think the paper she wrote after the feasibility study goes through what was said and the reasons for the changes. So we should reread this - i remember thinking at the time that it was dodgy to run a small trial to find out how to optimize results and then run a bigger trial.

The use of school attendance is far from ideal but the issues have been discussed by patients on forums I don't think a feasibility study was necessary to find potential issues.
 
Sean said:
Of course, none of this would be a problem, if the anonymised raw data was available for others to analyse.
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There were issues with the data collection. They did phone calls to collect just the primary outcomes so there were more people not reporting the school attendance. However, since she had access to school systems this data would provide better coverage of school attendance - but she didn't use or report this data.
 
Adrian said:
One of the points about doing a feasibility study would be to look at measurements. But feedback from the paticipants should just be one part of that. She should have been looking at do the measurements represent reality. Then using that information a fresh trial should be constructed - the real issue is that she converted the trial from a feasibility study to a full trial with a redesign part way through.

I think the paper she wrote after the feasibility study goes through what was said and the reasons for the changes. So we should reread this - i remember thinking at the time that it was dodgy to run a small trial to find out how to optimize results and then run a bigger trial.

The use of school attendance is far from ideal but the issues have been discussed by patients on forums I don't think a feasibility study was necessary to find potential issues.
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Yeah, I certainly think that the specifics of how outcomes were changed is a problem in this case, and the way data from the feasibility study was then folded into the main study are all serious problems.

I have read that feasibility paper, and don't remember there being much of substance in there. The findings of qualitative work often seems to have patients supporting the view of whoever the authors of the paper are!
 
sb4 said:
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.
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How do we pull this off?
 
Alvin said:
How do we pull this off?
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I don't know mate.

I see one problem as, the guys who come up with and support the mainstream scientific opinion, then get deemed the experts on the subject and then have great sway over the discourse and what further research in that area grants. This leads to people going against them being labelled quacks and their ideas discredited.

The problem is, if we say that experts in a certain field cannot have influence over who gets grant money, then that could lead to grant money getting misspent in that field unnecessarily.

Perhaps all we can do is drill it in to everyone's heads that scientists are not the scientific method personified and can well be nasty, egotistical and anti science as anyone else, even when the majority of the scientific community backs them up. Then just except the fact that paradigms don't get overturned until many decades have passed and many people have died.

But I know there is a solution to this problem just haven't thought about it long enough / too stupid to figure it out.
 
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