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 co- ordinated 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 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...”
