Esther Crawley

Wonko said:
I can't see the difference.

The link you posted that I quoted you, that said was down.

https://web.archive.org/web/2017021...g-what-is-right-in-a-controversial-field/5370

It is not. It is up.

however the last link you sent

The original page is here: https://www.nihr.ac.uk/blogs/doing-what-is-right-in-a-controversial-field/5370

is not working

Either I'm missing something or life is currently confusing.
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In this post:

Esther12 said:
This blog seems to have been taken down?

https://web.archive.org/web/2017021...g-what-is-right-in-a-controversial-field/5370

Crawley's other NIHR blog is available here: https://www.nihr.ac.uk/blog/worries-that-keep-you-awake-at-night/11067
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I was saying that the blog seemed to have been taken down from the NIHR site, and linked to an archived copy of it so that people could see what was originally there. Pages saved on web.archive are available there even when taken down from their original address.

I'll edit that post to make it clearer.
 
Applied Research Collaboration - West (NIHR)
staff
Professor Esther Crawley Theme Lead Healthier Childhoods
https://arc-w.nihr.ac.uk/about-arc-west/staff/

Healthier childhoods
Working with our colleagues in primary care, child health, child and adolescent mental health, children’s social care, as well as police and schools, we will build the evidence base to enable frontline services, working with children and their families, to do a better job in their fight to reduce the harm caused by childhood adversity and deprivation.

Theme lead: Professor Esther Crawley
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https://arc-w.nihr.ac.uk/research-and-implementation/#healthier-childhoods
 
Found this in my drafts folder and thought it didn't warrant an own thread so just leave it here. (From July, didn't check for updates)

I did some search on PROSPERO (International Prospective Register of Systematic Reviews)

https://en.wikipedia.org/wiki/PROSPERO
In 2017, concern was raised that some protocols in PROSPERO could be "zombie reviews" for which the protocol had been registered, but its record in the database had not been updated to indicate that it had been completed. Andrade et al. showed that only 7% of all reviews registered in PROSPERO from 2011 to 2015 had since been marked as "completed". These authors suggested that many of these reviews were either abandoned, meaning they had not been completed or published, or, if they had been completed, had not had their PROSPERO record updated to reflect this.[6]
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There seem to be quite a couple of PROSPERO-registered systematic reviews for which Esther Crawley was a co-applicant and to which the concern mentioned in Wikipedia applies (listed by PROSPERO as "ongoing" but started some years ago and now way beyond the anticipated completion date).

(Edited to add: don't remember if I checked whether the studies have been published, maybe with a slightly different title.)

Recovery in paediatric CFS/ME
https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=9303

Using MRI as a neuroimaging technique to investigate Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: a systematic review
https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=50569

Children’s experiences of living with CFS/ME: a systematic review and synthesis of qualitative studies
https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=9896

Maria Loades, Esther Crawley. Systematic review of depression in paediatric CFS/ME
https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42015016813

Systematic review of the relationship between cortisol levels and CFS in children
https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=29144

This one is registered as completed but couldn't find it published:

Systematic review for the treatment of CFS/ME via dietary manipulation/nutritional supplementation
https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=10756

(Edited to fix a URL & spelling)
 
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On the SMC (Science Media centre) website; Views from the Front Line (Essays on the SMC from 2012)
page 10.
Threats of persecution

There are still many illnesses in which the cause is unknown or disputed - and this usually acts as a spur to further research aimed at achieving a more complete understanding. But there are a handful of disorders in which some patients become convinced that they already know the cause: so deeply convinced that alternative explanations are seen not merely as false but as put forward with malicious intent. Researchers who are investigating or merely discussing these alternatives, they
believe, must at all costs be silenced. And “all costs”, in this context, can mean taking action against them as individuals.
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Dr Esther Crawley is a senior lecturer at the University of Bristol and a consultant paediatrician with a special interest in chronic fatigue syndrome/myalgic encephalopathy (CFS/
ME). She’s based at the Royal National Hospital for Rheumatic Diseases in Bath where she runs a clinical service for children. CFS/ME is one of those illnesses plagued by violently to
irrational prejudices about cause and cure. Here Dr Crawley describes her predicament, and how she overcame it with the help of the SMC and the science reporter for BBC Radio 4’s
Today programme, Tom Feilden
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Dr Esther Crawley

For years we had felt, I think, like victims. I was quite new to it all but even I had started
to wonder whether I should give up. I was doing research that children and families wanted:
investigating treatments for CFS/ME; trying to find how common it was in children; and exploring
possible risk factors. Yet I was being subjected to an unrelenting attack from a minority of patients, none of whom I had ever met.
It had started with emails, letters and phone calls. Some were benign; they merely suggested I
change research projects. Some were more malevolent. Some were threatening. I switched phone
numbers, filed the letters and the emails and talked to the police.
Then the attack became a little more co-ordinated. There were frequent and repetitive Freedom of Information (FOI) requests. A scan of blogs quickly showed where these had come from.
This was followed swiftly by complaints to the National Research Ethics Service and the General Medical Council.
The complaints again looked identical, were based on defamatory allegations and were clearly part of a coordinated attack. The allegations of affairs, money making and conspiracy made my life seem much more interesting than it really was (or is). The Bristol University authorities
were shocked but supportive. The allegations made my husband laugh.
Around this time, I started to talk to the SMC about why they were finding it hard to work with people in this field.
This, I learned, was one of a handful of areas in which researchers did not engage with the SMC out of a fear of being persecuted.
The damaging consequences of this reluctance were widespread. Nationally we had developed a culture of not talking about CFS/ME research, not engaging in studies with the potential to cause problems, and not commenting on other peoples’ research. Journalists that dared to report or discuss CFS/ME were inundated with complaints, and many refused to write about it again.
Maybe it was time to do something different.

The SMC organised a meeting so we could discuss whatto do to protect researchers. Those who had been subject to abuse met with press officers, representatives from the GMC and, importantly, police who had dealt with the animal rights campaign. This transformed my view of what had been going on. I had thought those attacking us were “activists”; the police explained they were “extremists”.
The tactics of using threats and abuse, and then trying to prevent research using FOIs and reviews, had all been seen before.

We discussed whether somebody at the top of one of the leading charities might be behind much of it, relying on others with a lower profile to take the abusive actions. We were told that we needed to make better use of the law and consider using the press in our favour - as
had researchers harried by animal rights extremists. “Let the public know what you are trying to do and what is happening to you,” we were told. “Let the public decide.”

A few weeks later the SMC emailed to ask whether any of us would be interested in talking publicly about what had happened. There was a debate among those who had been harassed over whether it was the right thing to do.
The arguments against were that it would give more air space to those causing the abuse (the BBC traditionally reports both sides), and might end up doing as much harm as good. Personally I felt I had nothing to lose. I also felt that the children and the families for whom I was doing research deserved to know what was happening.
The SMC suggested that we talk to the BBC’s science reporter Tom Feilden. It is hard to trust again when you’ve been hurt, but the SMC was insistent that he was one “of the best”. They would trust him with anything, they said. He was a fair and responsible reporter. Tom visited
for about an hour, listened to the research we were doing and recorded an interview. The piece was broadcast on the Today programme, and the response was unbelievable.

I took part in quite a few interviews that day, and have done since. I was also inundated with letters, emails and phone calls from patients with CFS/ME all over the worldasking me to continue and not “give up”. The malicious, they pointed out, are in a minority.

The abuse has stopped completely. I never read the activists’ blogs, but friends who did told me that they claimed to be “confused” and “upset” - possibly because their role had been switched from victim to abuser. “We never thought we were doing any harm...”
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https://www.sciencemediacentre.org/...ews-from-the-front-line-essays-on-the-SMC.pdf

on the same page a piece from Tom Feilden
The original idea for the story came from my editor, Ceri Thomas. At an SMC meeting he’d
heard something about doctors and on the internet, and thought it might be worth looking into. I
contacted the Centre. It was clear from the reaction to my call that we had a big story.
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Armed with more information, and the names of some of the doctors and academics that had popped up on websites and in internet chat rooms, I went back to the SMC.

It was clear that they had been busy too, and had come up with a number of researchers who were willing to speak out. Did I want to go to the Centre for Child and Adolescent
Health in Bristol and meet Esther Crawley?

As well as offering clinical treatments for CFS sufferers, Dr Crawley is involved in research into the causes of the condition and its socio-economic impact. She’s a well respected academic working in a field crying out for further analysis, and one whose results are regularly published in the peer reviewed scientific literature.

But it was when she got involved in a study to assess the efficacy of one particular treatment, a therapy known as the lightning process, that the trouble started.
Vilified on internet websites Dr Crawley was subjected to a vicious email hate campaign, and was also the subject of a series of formal complaints alleging both personal and professional misconduct.
None of the complaints - to the University, the ethics committees overseeing her research, or the GMC - was upheld, but the campaign did cause Esther Crawley to question whether it was worth continuing her work on CFS.
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It was the SMC that had persuaded, supported and prepared the scientists to speak out on
Today. Without this we would have been on the outside looking in, and the story would have been the lesser for it.
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eta:
other link on smc website which explains origins of selection of essays
https://www.sciencemediacentre.org/?s=essays&cat=
 
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Sly Saint said:
On the SMC (Science Media centre) website; Views from the Front Line (Essays on the SMC)
page 10.

https://www.sciencemediacentre.org/...ews-from-the-front-line-essays-on-the-SMC.pdf
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Esther Crawley said:
The SMC suggested that we talk to the BBC’s science reporter Tom Feilden. It is hard to trust again when you’ve been hurt, but the SMC was insistent that he was one “of the best”. They would trust him with anything, they said. He was a fair and responsible reporter. Tom visited for about an hour, listened to the research we were doing and recorded an interview. The piece was broadcast on the Today programme, and the response was unbelievable. I took part in quite a few interviews that day, and have done since. I was also inundated with letters, emails and phone calls from patients with CFS/ME all over the world asking me to continue and not “give up”. The malicious, they pointed out, are in a minority. The abuse has stopped completely. I never read the activists’ blogs, but friends who did told me that they claimed to be “confused” and “upset” - possibly because their role had been switched from victim to abuser. “We never thought we were doing any harm...”
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Wow, okay... But then again, by linking that here, you've probably doubled the number of people who will actually read it. ;)

It's funny how FOIs and concerns about violating ethics agreements are considered worthwhile in other fields where scientists are practising sloppy science - when those scientists are not considered mainstream. But when mainstream scientists practise sloppy science, it is somehow considered harassment to call them out on it. "The Lightning Process" is pseudoscience, yet if the study is conducted by a mainstream scientist, somehow we have to consider that it is scientific?

Tom Feilden said:
Reluctantly I agreed. But I set about researching the issue on the internet. At its heart seemed to be the classification of CFS as a psychiatric condition. The assumption underpinning much of the most vociferous comment from a small cabal of campaigners seemed to be that this amounted to an attempt to dismiss sufferers as either mad or malingerers. The real cause was an, as yet, undiscovered virus, and anyone who demurred was involved in an elaborate conspiracy.
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Tom, doing what many journalists do best - mischaracterising the arguments of the "opposing side" to bolster the argument of the people who are supporting you writing the article.

The classification is not central to any of the arguments, it is of secondary consequence. The supposition that CFS is not primarily "psychological" is a logical corollary of the fact that cognitive and behavioural therapies do not lead to remission of symptoms, despite decades of certain prominent people claiming that it can. We don't care about the hypothetical classification (or any irrelevant arguments about mind-body dualism), nor hypothetical stigma of mental illness! What we need and care about is effective treatments!
 
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That SMC piece looks very odd. What do they mean by "threats of persecution"? They might perhaps reasonably allege persecution but they suggest no evidence for "threats of persecution". Or do they imply a subjective test, rather than an objective one - Their fear of persecution amounts to a threat, regardless of objective behaviour by the "activists"?

The chronology also looks strange. When was the Crawley interview on Today? Is it credible that Feilden was unaware of the problem before that. Was not the "threatening" behaviour alleged by about 2007? Probably earlier.

And is Feilden really unable to find people to speak to him if they are not directed to do so by the SMC?
 
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