Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017

I think it has been mentioned along the way that EC has been involved in biological research? And that her views do not necessarily align completely with White and Co? I'm assuming EC does categorically align herself with the deconditioning theory of ME ... can anyone clarify please?
 
large donner said:
What I don't understand is if she is a treating pediatrician how can she be a lead in research also.

Surely research is a whole specialty in itself.
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Actually the opposite applies, really. Unless you see patients every week it is very difficult to know what the real questions are in medical research. I went on doing three clinics a week until I retired. If you do not see patients you are likely to end up studying rats or something equally irrelevant.

All you need to do research is an infinite capacity for accepting that you are wrong most of the time and a frantic desire to put that right. As long as you keep realising you are doing things wrong you will learn what you should really be doing. There is no 'training' for research. The academic junior lecturers who used to be picked to 'train for research' almost invariably got nowhere because they assumed that what they were told was right. The people who made headway were those who just got on with both lots of clinics and lots of experiments and were always worried that they were wrong. If you want to do basic research into normal mechanisms of physiology that is different - full time in the lab is best. But if you want to understand disease seeing patients is the only way. You learn about diseases from patients, not textbooks.
 
Barry said:
I think it has been mentioned along the way that EC has been involved in biological research? And that her views do not necessarily align completely with White and Co? I'm assuming EC does categorically align herself with the deconditioning theory of ME ... can anyone clarify please?
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White has done some biological research too. It think most people have distanced themselves from the deconditioning theory now, and Crawley has say a few tims that she thinks CFS/ME is a 'physical' illness, whatever that means. But she goes on making misleading claims about the efficacy of 'rehabilitation', she goes one defending PACE, etc.
 
Barry said:
I think it has been mentioned along the way that EC has been involved in biological research? And that her views do not necessarily align completely with White and Co? I'm assuming EC does categorically align herself with the deconditioning theory of ME ... can anyone clarify please?
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Prior to around 2000 Esther Crawley did biological research. After a break of a year or two with no research, she started doing CF/CFS stuff. As far as I can tell she doesn't have a theory about ME/CFS pathology, but she does believe that CBT/GET can cure it. She actually hasn't done a lot of research until the past year, and most of it is a bunch of fluff - playing around with questionnaires, rates of chronic fatigue in teens, etc.

Reports of her re-diagnosing children with Pervasive Refusal Syndrome if they don't get cured by CBT/GET would suggest that she views the symptoms of ME/CFS as being entirely psychosomatic. She also omits PEM, or dilutes it to post-exertional fatigue, which would suggest she doesn't believe specific symptoms are important, which is also an indication of a psychosomatic viewpoint.

She doesn't seem very intelligent, and I doubt she has a well-developed theory which she could express in a coherent manner.
 
Esther12 said:
White has done some biological research too. It think most people have distanced themselves from the deconditioning theory now, and Crawley has say a few tims that she thinks CFS/ME is a 'physical' illness, whatever that means. But she goes on making misleading claims about the efficacy of 'rehabilitation', she goes one defending PACE, etc.
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Thanks. What I was trying to home in on, was if she had ever given any indication she does not support the deconditioning theory? Being as that seems to be the whole premise on which the BSP-flavoured trials are founded on, if she had ever indicated that, then I would have been interested to know on what theory her support of GET was actually based on; if any theory at all. But maybe she has in fact explicitly declared her support for the deconditioning theory, in which case my angle is pointless.
 
Esther12 said:
It think most people have distanced themselves from the deconditioning theory now ....
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Sort of. In research or scientific discourse they don't claim that, and for the most part they never did. Even early GET research was done as a desensitization process for a psychological aversion, rather than for having any possible physiological benefit.

But deconditioning is still used in explaining how CBT/GET work to non-specialist practitioners and to patients. It's a lie used to avoid saying what they really believe - that symptoms are not real. It sounds better to say that symptoms are real and you just need to do some gentle and fun activities to get your health back.
 
Valentijn said:
Prior to around 2000 Esther Crawley did biological research. After a break of a year or two with no research, she started doing CF/CFS stuff. As far as I can tell she doesn't have a theory about ME/CFS pathology, but she does believe that CBT/GET can cure it. She actually hasn't done a lot of research until the past year, and most of it is a bunch of fluff - playing around with questionnaires, rates of chronic fatigue in teens, etc.

Reports of her re-diagnosing children with Pervasive Refusal Syndrome if they don't get cured by CBT/GET would suggest that she views the symptoms of ME/CFS as being entirely psychosomatic. She also omits PEM, or dilutes it to post-exertional fatigue, which would suggest she doesn't believe specific symptoms are important, which is also an indication of a psychosomatic viewpoint.

She doesn't seem very intelligent, and I doubt she has a well-developed theory which she could express in a coherent manner.
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Even White and Co have a theory (deconditioning), no matter how cock-eyed it might be. Running trials on children with a potentially dangerous treatment, when you don't even have any theory on which you can allegedly gauge safety risks, seems pretty strange.
 
Jonathan Edwards said:
Actually the opposite applies, really. Unless you see patients every week it is very difficult to know what the real questions are in medical research. I went on doing three clinics a week until I retired. If you do not see patients you are likely to end up studying rats or something equally irrelevant.
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I'm not sure this is always true. Not in psyc and neuro fields. Clinicians in these areas think in a particular way that makes it hard for them to step outside the box and challenge their assumptions. They do pretty average research in my area.

Smart juniors can be really valuable. They are often still observing phenomena for themselves, and haven't yet developed a strong conceptual structure to filter it all through.

I think you can see this problem really clearly in the BPS research. It's the clinicians that aren't listening to the patients. These folks have got it all mapped out in their heads, and they filter what patients say through their own preconceptions.

Its always struck me as hugely ironic that its the mental health professionals who are unable to hear what patients are actually saying.
 
Research that Esther Crawley has been involved in has given some bizarre results - like that doing CBT and GET online is fives times more effective than doing it with a real life person, and that pseudo-scientific cultish treatments can help CFS. Now, maybe those results are perfectly valid, but I'd think any reasonable scientist would first ask the question about whether something has gone wrong with the methodology. What is strange though, is that Esther Crawley is not asking those questions about the methodology, she's showing great confidence in the results even without sufficient replication, and is publicizing them to a very unusual degree.

Now I don't actually think Esther Crawley is some kind of person hellbent on heavily implying CFS is a psychosocial condition or anything, or that she's a person with malicious intent, but there seems to be something a bit unusual about her thought processes. For a methodological grey area like CFS (a condition that doesn't work like any others, whether the fatigue doesn't work like any others), I don't think a few researchers have been applying sufficient skepticism.

It is good, though, that she acknowledges some of the evidence of CFS being biological at the beginning, and she talks about how underfunded it is. I also don't doubt that she's been harassed, even if her way of proving it is highly questionable. I mean, I've seen her insulted in every way possible online (beyond legitimate criticism), which certainly counts as a kind of harassment.
 
Woolie said:
I'm not sure this is always true.
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Of course people who do not think outside the conventional dogma box achieve nothing because science is all about thinking outside that box, and clinicians are as bad as any other on that. But I was not arguing that there are no useless clinical scientists. My point is just that most of the groundbreaking work in terms of mechanisms and treatment of human illness has been done by people who have gone on seeing patients, so there is nothing unusual about being a researcher and seeing patients. In the last 20 years only about 1% of scientists have actually achieved anything significantly new, whether clinical or lab based. The percentage used to be much higher but me too research has overwhelmed everything else.
 
petrichor said:
I'd think any reasonable scientist would first ask the question about whether something has gone wrong with the methodology. What is strange though, is that Esther Crawley is not asking those questions about the methodology, she's showing great confidence in the results even without sufficient replication, and is publicizing them to a very unusual degree.
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I think you may have a rosy picture of what scientists are like these days. Almost everyone in science is motivated by promotion and money - because they are told by their superiors that that is what they should be motivated by. I have been told that many times. All that mattered was my returns to the Research Assessment Exercise - how many papers and how much grant money. Actual answering of questions does not figure.

It is very sad. And it means that scientists have no real motivation for worrying if their results mean anything. If they get papers and grants they should be happy. In other branches of medicine scientists follow the most ridiculous lines like rat experimental allergic encephalitis as a way of studying MS.

What I think may be different here is that when it comes to studies of treatments there are normally two further constraints on methodological quality. One is that if you do trials on adults they are likely to be sceptical about treatments that do not seem to make sense. But children may not get that option. The other is that ethics committees and journals tend to take a lot of notice of misgivings by peer reviewers and in internal medicine and clinical pharmacology these trials would simply not get through. The problem seems to be that peer review is limited to psychiatry. (There also seems to be a question about local ethical committee rigour.) Maybe in psychiatric illnesses the same goes on but it does not come to light because psychiatric patients do not tend to be interested in research much themselves - they are not in a fit state to be concerned.

Perhaps what is unusual here is that Dr Crawley is a physician (paediatrician) who has wandered into psychiatric methodology in an illness that is not psychiatric in the usual sense.
 
Jonathan Edwards said:
Of course people who do not think outside the conventional dogma box achieve nothing because science is all about thinking outside that box, and clinicians are as bad as any other on that. But I was not arguing that there are no useless clinical scientists. My point is just that most of the groundbreaking work in terms of mechanisms and treatment of human illness has been done by people who have gone on seeing patients, so there is nothing unusual about being a researcher and seeing patients. In the last 20 years only about 1% of scientists have actually achieved anything significantly new, whether clinical or lab based. The percentage used to be much higher but me too research has overwhelmed everything else.
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I think we agree here, @Jonathan Edwards. I certainly don't think that limitation applies to you!
 
petrichor said:
Now I don't actually think Esther Crawley is some kind of person hellbent on heavily implying CFS is a psychosocial condition or anything, or that she's a person with malicious intent, but there seems to be something a bit unusual about her thought processes.
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You make good points, @petrichor. There IS something different about Dr. Crawley - when you compare her with some of the staunch BPS advocates. The latter are ideologically driven, Dr. Crawley isn't. She's just sort of riding on the seat of her pants. Her approach is more simplistic and paternalistic than ideological like those others.
 
Jonathan Edwards said:
I think you may have a rosy picture of what scientists are like these days. Almost everyone in science is motivated by promotion and money - because they are told by their superiors that that is what they should be motivated by. I have been told that many times. All that mattered was my returns to the Research Assessment Exercise - how many papers and how much grant money. Actual answering of questions does not figure.

It is very sad. And it means that scientists have no real motivation for worrying if their results mean anything. If they get papers and grants they should be happy. In other branches of medicine scientists follow the most ridiculous lines like rat experimental allergic encephalitis as a way of studying MS.

What I think may be different here is that when it comes to studies of treatments there are normally two further constraints on methodological quality. One is that if you do trials on adults they are likely to be sceptical about treatments that do not seem to make sense. But children may not get that option. The other is that ethics committees and journals tend to take a lot of notice of misgivings by peer reviewers and in internal medicine and clinical pharmacology these trials would simply not get through. The problem seems to be that peer review is limited to psychiatry. (There also seems to be a question about local ethical committee rigour.) Maybe in psychiatric illnesses the same goes on but it does not come to light because psychiatric patients do not tend to be interested in research much themselves - they are not in a fit state to be concerned.

Perhaps what is unusual here is that Dr Crawley is a physician (paediatrician) who has wandered into psychiatric methodology in an illness that is not psychiatric in the usual sense.
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I think a bit of the problem with psychiatry is that it's much harder to definitively build up evidence for something being, or not being the case (it's all grey), whereas that isn't the case to such a degree with other areas of medicine. So a group of people can enjoy agreeing with eachother and citing eachother in psychiatry, and it's very difficult for something to come along that actually disproves them in a definitive way.
 
Jonathan Edwards said:
Actually the opposite applies, really. Unless you see patients every week it is very difficult to know what the real questions are in medical research. I went on doing three clinics a week until I retired. If you do not see patients you are likely to end up studying rats or something equally irrelevant.

All you need to do research is an infinite capacity for accepting that you are wrong most of the time and a frantic desire to put that right. As long as you keep realising you are doing things wrong you will learn what you should really be doing. There is no 'training' for research. The academic junior lecturers who used to be picked to 'train for research' almost invariably got nowhere because they assumed that what they were told was right. The people who made headway were those who just got on with both lots of clinics and lots of experiments and were always worried that they were wrong. If you want to do basic research into normal mechanisms of physiology that is different - full time in the lab is best. But if you want to understand disease seeing patients is the only way. You learn about diseases from patients, not textbooks.
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But its bizarre that there is no overseeing organisation that one has to belong to or at least first prove you have the basic understanding of how to design a study. You need a licence to drive a car and have to sit a test first. Without the test yes most people could shuffle along until they worked out how to drive the car, they might kill a few people on the way and maime a few for life. If you are caught making mistakes you get points on your licence and a fine. If its a bad offense you can lose your licence. That's why we regulate it.

It seems so bizarre that medical research doesn't operate in a similar fashion. Its so obvious from the PACE trial that people like White and Crawley cannot design a trial with the simplest of variable controls and set out the parameters properly. Then on top of that there's the countless peer reviewers that read their work and did the same.

You learn about diseases from patients
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The problem with that is the presumption that one can be left alone to learn and report back because scientists/researchers are righteous beings by default. They are practically given the status of priest from the middle ages.
 
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large donner said:
But its bizarre that there is no overseeing organisation that one has to belong to or at least first prove you have the basic understanding of how to design a study. You need a licence to drive a car and have to sit a test first. Without the test yes most people could shuffle along until they worked out how to drive the car, they might kill a few people on the way and maime a few for life. That's why we regulate it.

Seems so bizarre that medical research doesn't operate in a similar fashion. Its so obvious from the PACE trial that people like White and Crawley cannot design a trial with the simplest of variable controls and set out the parameters properly. Then on top of that the countless peer reviewers read their work and did the same.



The problem with that is the presumption that one can be left alone to learn and report back because scientists/researchers are righteous beings by default. They are practically given the status of priest from the middle ages.
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I agree. There will be those who can do it like that, and those who can't. We need to be protected from those who cannot do it without training. But I do also agree with @Jonathan Edwards, that any training must not indoctrinate the scientific inspiration and creativity out of budding researchers; just ensure they understand the funadamental tools of their trade. Maybe akin to studying art without killing off artistic creativity.
 
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