Firestormm
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Tempting to ignore I suppose. Hopefully, we won't be going over the same ground again. Still, always important to read what is being said 'out there' about those whose actions threaten to tarnish us all with the same brush.
Taken from the Anniversary Brochure of the Science Media Centre. Apparently, the SMC are ten years old - hmm... Be grateful if someone could confirm the date that this was actually published. It was posted on the ME Association Facebook page by Dr Shepherd yesterday - 30 November 2012.
It is I think a review of the past 10 years and the year in question (below) is of course 2011 and the appearance on BBC Radio 4 by Dr Crawley, and about the 'death threats' - as the whole sorry saga has now been dubbed. Hopefully, this can be left behind us now. It is nearly Xmas - I'm allowed to hope
Spacing's are my own.
Taken from the Anniversary Brochure of the Science Media Centre. Apparently, the SMC are ten years old - hmm... Be grateful if someone could confirm the date that this was actually published. It was posted on the ME Association Facebook page by Dr Shepherd yesterday - 30 November 2012.
It is I think a review of the past 10 years and the year in question (below) is of course 2011 and the appearance on BBC Radio 4 by Dr Crawley, and about the 'death threats' - as the whole sorry saga has now been dubbed. Hopefully, this can be left behind us now. It is nearly Xmas - I'm allowed to hope
http://www.sciencemediacentre.org/wp-content/uploads/2011/10/SMC-Anniversary-Brochure.pdf
Pages 16-17
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.
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.
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 what to 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 Science Media Centre is a most extraordinary thing: it is highly valued by scientists and journalists alike. It somehow allows the realities and uncertainties of research to be communicated in even the most controversial of topics while fitting in with the needs of the media machine. Working with the Science Media Centre is always positive and comes with the added benefit that you know science correspondents will always sit up and take note of anything coming from the SMC!." Jonathan Wood, Press Officer, University of Oxford
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 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...”"
Tom Feilden
"Although I knew that chronic fatigue syndrome was a controversial illness that provoked strong
opinions, I wasn’t aware that the health care professionals and scientific researchers working on
the problem were the ones at the eye of the storm. Nor was I prepared for the level of vitriolic abuse or the campaign of intimidation that was being waged against them.
The original idea for the story came from my editor, Ceri Thomas. At an SMC meeting he’d heard something about doctors being targeted at conferences 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.
Yes, they did know about it and, yes, it was a serious problem. But the scientists and medics being targeted were worried about what might happen if they talked to the media. If they spoke out, wouldn’t that draw more attention to them, inviting more abuse to be heaped on their shoulders, and exacerbating the problem?
Also, weren’t the media just interested in a good punch up? On the other hand there was a clear understanding at the SMC that this was an important issue that needed to be aired. Could I leave it with them - at least for a while? 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.
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. After all, there are plenty of other important areas of medical research that desperately need to be addressed and don’t attract this level of abuse and intimidation.
We could, and would, have run the story without the help of the SMC. But it would have been without the
personal insights or reflections of those at the sharp end of the controversy. 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."
Spacing's are my own.