Esther Crawley - (what drives her) plus quotes

Sly Saint · Aug 22, 2020

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.
Click to expand...

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.
Click to expand...

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=

Barry · Aug 21, 2020

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

on the same page a piece from Tom Feilden
Click to expand...

Funny there is never any reporting of the scientists who criticise the work of these people. Perhaps Tom Feilden might care to provide a bit of balance to his reporting, given he is supposed to be a journalist with integrity.

Snow Leopard · Aug 21, 2020

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
Click to expand...

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...”
Click to expand...

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!

Cheshire · Aug 21, 2020

This is really disgusting. Typical of bullies, play the victim and blame the victim.

chrisb · Aug 21, 2020

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?

Sean · Aug 21, 2020

chrisb said: ↑

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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Ah, the fearless dogged investigative journalist. Or what passes for one in this age.

Barry · Aug 22, 2020

Tom Feilden said:

The real cause was an, as yet, undiscovered virus, and anyone who demurred was involved in an elaborate conspiracy.
Click to expand...

Er, no ... get it right Tom. It is their critics who argue that the cause and perpetuation is as yet unknown, and the BSP'ites who assert it is known to be deconditioning combined with unhelpful beliefs that prevent recovery behaviours. This is a classic case of perpetrators accusing their victims of the very behaviours they indulge in themselves. And Tom Feilden has fallen for it hook line and sinker.

And "undiscovered virus"? Where did that come from?

ETA: I had not realised this article was from 2012. See my additional post regarding this https://www.s4me.info/threads/esther-crawley-what-drives-her-plus-quotes.1139/page-7#post-281817.

rvallee · Aug 21, 2020

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
Click to expand...

That's a really weird statement. This is how things should be but, no, definitely not how they actually are. If anything disputed diseases constantly face the threat of nullification and receive no adequate resources. Diseases that are not disputed get far more resources and sympathy, while disputed ones in fact are always on the chopping block and dead last in priorities.

CFS/ME is one of those illnesses plagued by violently to irrational prejudices about cause and cure
Click to expand...

By the likes of Crawley. They literally are the source of all prejudices against us. WTF is wrong with these people?

Of course the meaning here is entirely on the basis that it spurs psychological research, since they are denial-based, but that literally makes achieving any understanding impossible.

These people are seriously weird and extremely bad at their job.

Snowdrop · Aug 21, 2020

ON the science media centre quote: this flyer would be from 2012 I think.

Binkie4 · Aug 21, 2020

Written but not posted earlier. Ran out of steam but I hope this makes sense.

Do we know when this rubbish was posted?

It's just the same old story- aggressive patients, harassed researchers- the latter disputed and dealt with by the 2016 Upper Tribunal. It's all they have.

But why would they post it now, if it was posted recently? To try to influence NICE; to intervene in the renewed interest in post viral illness following covid?

Aaah.......it seems to be one of a number of pieces posted to celebrate a decade of the SMC's work. The SMC was established in 2002 so this makes it posted in 2012
I assume.

Quote from the introduction before short articles on work of SMC, one of the items being Esther Crawley's story.

"Fiona Fox Chief Executive

Now we are ten. It seems to Fiona Fox, the Science Media Centre’s founding director, a long time since she sat in front of a daunting interview panel of eminent scientists including a Baroness, a Lord, and the editor
of Nature - and managed to persuade them that they should not allow her lack of a science background to blind them to her other talents.
She has, she says, many reasons to thank them for their confidence. She looks back on the past decade as the most stimulating, challenging and fulfilling of her working life. She is proud of the SMC’s achievements and to have played her part in changing the culture of science in such a way that the public and policy makers now hear more from scientists than at any other time.

Getting a hearing: a decade of achievement
this brochure recounts a handful of the kind of stories in which the SMC has been involved. The personal perspectives of the scientists, journalists
and press officers we have worked with reveal what has, more than anything else, defined the SMC: our belief that scientists should get more engaged proactively."

And Esther Crawley's is one of the stories she was proud of!!

@Snowdrop I think was also saying this about the timeline

edit: First para amended.

James Morris-Lent · Aug 22, 2020

Barry said: ↑

Funny there is never any reporting of the scientists who criticise the work of these people. Perhaps Tom Feilden might care to provide a bit of balance to his reporting, given he is supposed to be a journalist with integrity.
Click to expand...

I don't know, Barry, that sure sounds a lot like work!

Amw66 · Aug 22, 2020

Can I ask why @Sly Saint posted yesterday - is there a media revisiting of this?
I expect some form of media intervention to try and control the narrative for both NICE ( as can also be seen by the flurry of published papers) and now long COVID which could expose the paucity of scientific rigour

I do suspect that though that

given the high prevalence

abiity to use internet to form support and campaigning groups for the start

number of medical staff affected

that longCOVID will quickly be separated off to leave reputations intact.

Barry · Aug 22, 2020

Barry said: ↑

Er, no ... get it right Tom. It is their critics who argue that the cause and perpetuation is as yet unknown, and the BSP'ites who assert it is known to be deconditioning combined with unhelpful beliefs that prevent recovery behaviours. This is a classic case of perpetrators accusing their victims of the very behaviours they indulge in themselves. And Tom Feilden has fallen for it hook line and sinker.

And "undiscovered virus"? Where did that come from?
Click to expand...

Snowdrop said: ↑

ON the science media centre quote: this flyer would be from 2012 I think.
Click to expand...

I have to say I had missed the fact this was from 2012. There has been an awful lot of water under the bridge since then, some of which I was alluding to in my earlier post.

Maybe my comments towards Tom Fielden are misplaced at this current time; hopefully he realises now how very misguided his 2012 article was. It would be good though if he cared to set the record straight in 2020.

Barry · Aug 23, 2020

Sly Saint said: ↑

https://twitter.com/user/status/1107387342103425024

Click to expand...

Thanks for that. I see Tom Feilden's twitter page, as one would expect, touches a lot on Covid 19. But not seen any references to long covid - has he discussed long covid at all, along with the potential overlap with ME/CFS? Would it be normal for a science editor to make no mention of it whatsoever at this point? Or is that an unfair question of mine? Is long covid still too far off of mainstream radar for that?

chrisb · Aug 23, 2020

Has the SMC established their position on the subject?

Barry · Aug 23, 2020

chrisb said: ↑

Has the SMC established their position on the subject?
Click to expand...

I think profound silence can sometimes speak volumes.

Sly Saint · Aug 23, 2020

Amw66 said: ↑

Can I ask why @Sly Saint posted yesterday
Click to expand...

because I only found it yesterday!
This is a thread of mostly historic articles and quotes relating to Esther Crawley.
Tom Feilden hasn't changed his tune at all.
https://me-pedia.org/wiki/Tom_Feilden

eta: I meant I only found it on Friday

Amw66 · Aug 23, 2020

Sly Saint said: ↑

because I only found it yesterday!
This is a thread of mostly historic articles and quotes relating to Esther Crawley.
Tom Feilden hasn't changed his tune at all.
https://me-pedia.org/wiki/Tom_Feilden

eta: I meant I only found it on Friday
Click to expand...

Thanks - I wondered if there was a big media spoon being stirred...glad that it's not

Binkie4 · Aug 23, 2020

It was one of a series of 10 articles posted in 2012 in a brochure to celebrate 10 years since the SMC was formed.

I tried to describe this in post #122 rather incoherently, I'm afraid. I am not sure I am any more coherent today so I will be quiet- but first say the first para from the quote by Fiona Fox is rather nauseating.

Sly Saint · Sep 25, 2020

more historic archived stuff

https://meagenda.wordpress.com/category/dr-esther-crawley/

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