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

Surely its not hard to comment on Crawleys Ted talk on youtube. All it needs is for someone with a youtube account to post a video outlining the flaws in her account that day and then people comment underneath. You don't even need to make long video infact you may not even have to make one of any real length.

If someone does do it don't show any of her clips as you make get hit with a copyright strike. Also make sure the comments are well moderated for trolls who may try to make false flag comments in an attempt to make patients look unreasonable.

 

I'm sorry but this is just rubbish, the woman is a danger to children and adults and she lies through her teeth on stage, in presentations and in her communications, that's proven.

The fact that people remark on her failings and quackery online in a straight talking way is not harassment its basic necessity.

She users her power as a pediatrician to manipulate and frighten the life out of parents with her quackery and PROVABLE lies and goes on national radio accusing a patient charity of not wanting children with ME to be helped to name but a few issues.

 

Actually, she is very focused on portraying ME/CFS as a psychological disorder. That's why she (mis)uses anxiety and depression questionnaires as much as possible, and always approaches ME/CFS from a psychological standpoint. She hasn't done a ton of research, so it should be fairly easy to read through some of it, if you're not clear on what she's saying outside of her self-promotional appearances.

I agree with @Jonathan Edwards that her behavior in this is not unusual, even if it is undesirable. She's not conducting research to improve understanding of ME - she's conducting research to create a platform for herself from which she can reach her real goals, which probably involve career advancement and a lot of attention, based on her behavior thus far.

You seem a bit unfamiliar with biopsychosocial research practices in ME/CFS. They never deny biological involvement, and usually classify symptoms as being physical, but would deny that biology is causing ongoing symptoms. This is why they think teaching patients to ignore their symptoms will cure them.

And the funding she's talking about is undoubtedly intended to go to herself and researchers who share her viewpoints - not real biological research. While it is conceivable that a psychosomatic researcher will have a change of heart and start performing biomedical ME/CFS research, it's unheard of for it to happen in real life. What does happen is a lot of appeals for money from people who have already commandeered far too much of it. They aren't doing that for our benefit - they're doing it to fund themselves and advance their careers.

She's never made an official complaint of any such harassment - so why give her the benefit of the doubt by denying the benefit of the doubt to the patient community? What we do know is that has lied outright about the harassment she has claimed to receive. We know she's a liar, and if she had any credibility to start with, she completely destroyed it in the process of telling those lies. And even if researchers do get harassed by a lone nutjob, they don't go around telling everyone how awful their patients are and nailing themselves to crosses in the process. The harassment narrative was created solely to deflect and undermine legitimate criticism, and it should be treated accordingly.

An insult is not harassment. Multiple insults are also not harassment. In no way does insulting someone constitute harassment, and those sorts of attempts to police tone just feed into the harassment narrative and martyr complex. Again, it is merely a way to avoid real engagement or debate, and silence dissent.

 

I'm sorry but with a name like Crawley when you manipulate children into bogus quack based studies people who can think clearly about what you are doing are going to call you Creepy Crawley and the Child catcher, especially in England where we specialise in satire to make genuine points.

 

You are right that there is a failure of accountability, but it is interesting to see where it occurs.

All consultant physicians pretty much do have to belong to an overseeing organisation, in order to get entry to which you need to have a basic understanding of how to design a study. They have to register with the GMC and to do that they have to pass an MB degree exam. They also have to pass the much stiffer exam of membership of the Royal College of Physicians. Everyone who gets that far has learnt the requirements for designing a study. They will have spent several years having weekly educational meetings at which examples of study design are discussed and criticised.

The problem is not that people like the PACE authors have not learnt how studies have to be designed in order for them to be any use. It is that having learnt that they choose to ignore it. In clinical pharmacology you cannot really get away with that because everyone around you will tell you the study is no good. In psychiatry it seems that everyone is so used to bullshitting all the time it gets through.

The other filtering mechanism is the ethics committee. I find it very hard to believe that any of these CBT type studies would have got through an ethics committee at UCH. But of course psychiatry is not done at UCH - they have their own clinical centres and probably ethics committees. So I cannot vouch for what goes on there. The Bristol situation would come under paediatrics and I would have thought that would go to a general medical ethics committee. Why problems were not flagged up is an important question.

What you might reasonably say is who polices the adequacy of ethics committees? I think the answer is nobody. What I do not know is whether it would help. General overseeing bodies are very open to political interference and maintaining the status quo.

The real disappointment for me is that more of my internal medicine colleagues have not made a stand on these trials. Mostly that is because they just don't know about them, but that cannot apply to all of them.

 

They are clearly living the dream.

 

Online CBT is more effective simply because you don' t have to expend energy getting up, dressing, travelling, having a session and going home ( not to mention the extended emotional energy worrying beforehand) it' s not really related to cbt per se. You can see this in the Dutch study where there was no long term difference between groups.
It seems such a simple explanation it should be obvious to anyone who appreciates the nature of the illness.

 

Finding it's five times more effective, even just in the short term, is still a fairly bizarre finding.

 

I've seen people say insults which, if they were directed to her in an organised ways, could be seen as harassment. Crawley has behaved really badly, and people are understandably upset about that, but I do see how expressions of that could be seen as a form of harassment. To me it seems like harassment can be defined very widely, and the courts have a lot of leeway on deciding what should be viewed as harassment.

Crawley and her colleagues have tried to spin the harassment narrative in misleading ways, but there's a danger of over-compensating in response to that. It wouldn't surprise me at all if a few patients did send stupid and abusive e-mails that could be considered as examples of harassment. In a court of law, righteous anger is no defence. For making progress, and picking apart the dodgy research done by Crawley & co, I think it would be best to avoid anything that could be viewed as 'harassment' - even if that requires repressing some well justified swear words!

 

It's likely she views the ongoing cause of symptoms as psychosocial. But it's still good she acknowledges it's at least partially biological. If people didn't watch past the first few minutes of the talk, the two main things they would've learnt is that there is evidence ME/CFS is biological, and that it is grossly underfunded. Regardless of her motivations, that's a good thing.

And you're probably right that a psychosomatic researcher has never probably had a major change of heart (although it does happen, rarely, that researchers decided that their previous research track was wrong). That's why Esther Crawley doesn't matter as much as everyone thinks she does I think. It isn't about convincing her or stopping her (because it's unlikely either will happen), it's actually about convincing everyone else. And that doesn't come from criticising or going on about her (not that's been happening too much), that comes from criticizing the research (not just her's, but the state of the evidence in general). Nobody else apart from us would care in the slightest as to whether she's got good or bad intent - they only care what the evidence shows.

And there's no point in denying that she's been harassed. Even in the case she hasn't, to most people it looks like she has, and denying that just makes us look even worse. That's the brutal fact of the matter.

 

So, if you were a social worker, policeman, hospital worker in A&E, traffic warden, ambulanceman, teacher even, what would you think about someone who brought up a sob story about getting unpleasant messages etc. as evidence of substantial harassment, and quoted it as a reason for people leaving the profession? And if you then went one step further and compared their salaries ..... ?

Being treated unpleasantly by a small minority (but still a large number) of the public is a reality for everyone who deals with everyone, from shop assistants to receptionists. It isn't right, it isn't proper, but it certainly isn't a reason for using it as an excuse to do your job in such a way that others will be harmed.

 

@Esther12 i agree it can be helpful for us to not hand them opportunities.

to me, we need to use a more accurate term for those who deny the existence of a serious disease; grossly impede science into it; use hate speech against its sufferers in mass media that has had literal parallels to 1930s german propaganda; corrupt, or exploit the corruption of, supposedly science-oriented institutions like the lancet, qmul, and bristol; misrepresent null results as positive; refuse transparency; get policy made against us; push factually impossible and untestable hypotheses; and with all apparent deliberateness rouse professional sentiment even to the point of kidney specialists against us, than "behaved badly".

to me, the bad guys we are facing didn't just crayon the wall. they don't merely need to be sent to the corner.

 

You make some excellent points, @petrichor, that have stimulated worthwhile discussion. It probably feels like people are attacking you because they disagree strongly with some of the points - but at the same time, they respect the way you've expressed your views enough to want to present the counterargument.

I want to present the counterargument to this point. Saying something is "at least partly biological" is a handwave that psychosocial CFS researchers often use. At a general level, its a trite thing to say, because every psychological process must be describable at a biological level (as a series of biological processes and mechanisms). For psychosocial researchers, it can mean anything from "The sensations you feel are in some sense biological, but you are interpreting them incorrectly" to "Your irrational thoughts and behaviours have led you to become inactive and so now your problem is compounded by genuine (biological) deconditioning".

These people are clever, they know how to talk the talk, how to make their ideas sound reasonable, palatable. "After all, every disease must have a psychological component, musn't it?". That sort of thing.

To really understand what causal claims are being made, take a look at what a researcher thinks is likely to fix the problem. If they think cognitive reframing and exercise therapy will fix it, then they believe the primary causal factors for the disease are cognitive and behavioural.

 

That ruling didn't relate to harassment of Esther Crawley. The tribunal also didn't say that there hadn't been any harassment, just that it had been exaggerated. We should acknowledge there has been some harassment, but deny that there has been a systemic campaign of harassment. Denying that there has been a systemic campaign of harassment is far, far easier than denying there has been any harassment at all. Denying there hasn't been any harassment at all is just an exercise in futility.

 

It related to harassment of ME/CFS researchers in general. It was not confined to the PACE team, from what I recall, as their primary "evidence" was an article involving Wessely's claims.

They said their was one incident of heckling, which I doubt they characterized as harassment, or that any other reasonable person would characterize as harassment.

 

The ruling related to whether there was enough evidence that the PACE team and participants suffered harassment. Evidence from other ME/CFS researchers being harassed was involved, but the tribunal didn't take any position on whether other ME/CFS researchers had been harassed. And whilst evidence of harassment was lacking, the only position that they took was that "activist behaviour" was grossly exaggerated, not that harassment didn't occur at all.

 

Someone did get caught doing that didn't they? Under the Science Based Medicine article on PACE?

I've not seen any good evidence of what I would describe as harassment. I think it would be a mistake to insist no harassment has taken place, as we cannot know whether it has or has not, but that's different to saying harassment has taken place. What we've seen good evidence for is not what I would consider 'harassment'. If people saying rude things on the internet is harassment, then almost every public figure will have faced harassment, and the term becomes pretty meaningless.

The tribunal ruling said, amongst more: "It was clear that his assessment of activist behaviour was, in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder."

"Contrast instead Professor Chalder's evidence when she accepts that unpleasent things have been said to and about the PACE researchers only, but that no threats have been made either to researchers or participants."

That is what it is. There may have been evidence of more than just heckling that was not presented - although when they're trying to build a case that they face nasty harassment, who knows why they would not? We don't know though, and I think it would be a mistake to go beyond what the judgement says, which is more than damning enough itself imo.

 

I disagree completely. She is making demonstrably false accusations against patients to delegitimize our concerns with her research. She is not merely saying "some guy said some weird things about me online." She is essentially saying "the people opposing my research are doing so because they are violent and irrational extremists, and I'm such a brave little soldier for continuing with my wonderful work regardless."

The exact intent of making such accusations is to silence us, and we absolutely cannot allow that to happen. Allowing the accusations to stand would allow her dismissal of criticism on those grounds to also go unchallenged, meaning she could get away with her portrayal that there is no legitimate criticism and only unhinged lunatics.

Her false accusations against patients are not a minor thing - in fact, it's slander and there are laws against it when it happens against an identifiable individual or group of individuals. It may even qualify as hate speech when used to target and marginalize a disabled group.

Esther Crawley's lies about the threat letter also represents a major fuck-up on her part, as it is so easy to document that those claims are a lie. This makes it a very good angle for discrediting much of what she has said, especially regarding her spiel about being the voice of ME patients. I suspect Tuller, Coyne, Rehmeyer and others will be digging into it soon if they aren't already, and this is the sort of juicy meat which even the mainstream British media may love to dig into - on par with Coyne's comment about a "disgusting old fart neoliberal hypocrite" But with the added attraction of having a substantial scandal behind it.

 

Well, here's a twitter account: https://twitter.com/estherpouts?lang=en pretending to be esther crawley, saying things that portray her in a bad light. That's what I'd call harassment. And that's just on the first page of googling her name. To anyone that even googles her name, it will look like she's been harassed.

And public figures like researchers aren't used to the kind of attention that other public figures get, so they are much more likely to interpret it as harassment.