Dr Charles Shepherd was given top slot on the BBC Radio 4 ‘Today' programme to explain our position on the ME ‘death threats’ story.
Sarah Montague: ‘Scientists researching chronic fatigue syndrome or ME have received death threats and been subject to a campaign of intimidation.
It’s being carried out by campaigners who object to any research that suggest the disease could be a mental illness.
Thirty years after the disease was first recognised, it’s still not known what causes it.
The scientists have told us about the abuse because it is stopping people working in their field and affecting the hunt for a cure.
Tom Feilden has been talking to some of those scientists affected:
Dr Esther Crawley: ‘So we run a large service for children with chronic fatigue syndrome. We see over 250 children and their families a year…’
Tom Feilden: ‘Consultant paediatrician Dr Esther Crawley who runs one of the UK’s biggest clinics specialising in Chronic Fatigue Syndrome or ME, at the Centre for Child and Adolescent Health in Bristol…’
EC: ‘…it is a huge problem. Not only is it very common but also for each child the estimates are that they miss about a year of school. So a very large problem and probably mostly undiagnosed.’
TF: ‘As well as offering clinical treatments for patients, Dr Crawley’s also involved in research into the causes of CFS, and its socio-economic impact. She’s a well respected academic working in a field crying out for further analysis, and whose results are regularly published in peer-reviewed scientific literature. But it was when Dr Crawley got involved in a study to assess the efficacy of a particular treatment, an alternative therapy known as the LightningProcess, that the trouble started:
Actor’s voice: ‘To those of you who are responsible for preventing us sick ME sufferers getting the help we need, wasting 5 million pounds on flawed bullshit, you will all pay’
Actor’s voice: ‘How are you evil bastards going to explain away another concrete piece of evidence that shows clear abnormalities…’
[Voice continues in background with more voices joining in…]TF: ‘Dr Crawley found herself the victim of a vicious email hate campaign, vilified on internet web-sites, and the subject of a series of formal complaints, alleging both personal and professional misconduct…’
Actors voice: ‘…time is running out for all of you so you better start denouncing your flawed inhuman bullshit, and pray to god for forgiveness.’
EC: ‘It felt to me that what happened was that they were trying a variety of strategies to get the study stopped and then as they were failing, they were increasing the erhm.. heat as it were..’
TF: ‘It’s worth mentioning, none of the complaints against Esther Crawley to the University, the Ethics Committees overseeing her research, or the GMC, have ever been upheld, but also that she’s not alone…’
Professor Simon Wessely: ‘Direct intimidation in the sense of letters, emails, occasional phone-calls and threats, and but more often indirect intimidation through my employer, the General Medical Council…’ [continues in background]
TF: ‘At the eye of this storm is King’s College London’s Professor Simon Wessely, who over the 20 years he has been involved in the field has been compared to the Nazi scientist Joseph Mengele and has received a series of death threats…’
SW: ‘All of it intended to denigrate and you know try and try and make you into a kind of a leper, so that no one would have anything to do with this ‘terrible person’.’
TF: ‘Given the vitriolic nature of the attacks it’s hard to discern a rational motive behind them, but it seems clear to Dr Wessely that it’s the association of Chronic Fatigue Syndrome with mental illness that provokes such anger…’
SW: ‘I think sadly some of the motivation here comes from people who really do believe that any connection with psychiatry and the world of psychiatry is tantamount to saying, ‘There is nothing wrong with you, go away, you’re not really ill.’ Now, that’s profoundly misguided. It fails to understand the whole nature of so many disorders, and instead they fall victim to the label and, and believe that the mere involvement of psychiatry denigrates them and denigrates the condition…’
Recorded broadcast American music:
‘ABC news now. Good to know…
Dr Donnica Moor: ‘What we do know is there is a biologic basis for Chronic Fatigue Syndrome…’ [continues in background]TF: ‘That hostility towards a psychiatric explanation for Chronic Fatigue Syndrome, broke the surface, when in October 2009, research published in the journal Science appeared to show a link between CFS and the XMRV retrovirus. This is Dr Donnica Moor on ABC’s Good Morning America…’
DM: ‘So we don’t wanna hear any more about ‘Oh they have depression’ or ‘It’s all in their heads’. That argument is over.’
TF: ‘Sadly, the series of follow-up studies published in the BMJ, the Lancet and the Public Library of Science, failed to replicate that finding, unleashing another torrent of abuse, this time aimed at virologists like Imperial College’s Professor Myra McClure…’
Professor Myra McClure: ‘It really was quite staggeringly shocking, and these were all from patients who seemed to think that I had some vested interest in not finding this virus, and that I I couldn’t understand and still can’t to this day, what the logic of that is. I mean any virologist wants to find a new virus.’
TF: ‘But it’s not an area you’re going to be doing any more research in?’
MM: ‘Absolutely not. No.’TF: ‘And that according to The Welcome Trust’s Dr Mark Walport, may be the single most important consequence of this campaign of abuse and intimidation.’
Dr Mark Walport: ‘Well it would be a tragedy if the outcome of all of this was that good scientists thought that it was just too difficult to research this condition. We clearly don’t understand exactly what’s going on, and if we are going to find out it needs good scientist’s to work on it. But why would any scientist work on it if they know that all they are going to receive is a torrent of abuse?’
Sarah Montague:
‘Dr Mark Walport ending that report by Tom Feilden. Well, Dr Charles Shepherd is a medical adviser to the ME Association, and is in our radio car now. Good morning…’
Dr Charles Shepherd: ‘Good morning Sarah.’
SM: ‘Can you understand? Can you try to explain to us the mindset of the people who are carrying out this abuse?’
CS: ‘Well, first of all let’s be clear Sarah, this sort of personal intimidation that you’ve been describing, is, I believe, completely unacceptable, and it’s also counter-productive because it doesn’t stop the type of research that you’ve been talking about going on, and it puts good researchers off and I mean there’s no doubt about that.
But I think you’ve got to put this into the context of the fact that we have around about 250,000 people with this illness. A very tiny, tiny minority of those people are involved in this sort of behaviour, but what people do have a justifiable complaint about is the fact that there has been very little or almost nil government-funded research into the biomedical aspect of this illness.
And really all this stems from the fact that the way that the medical profession has re-named and re-defined that we used to know as ME, which is Myalgic Encephalomyelitis, which is a symptom complex of muscles symptoms, brain symptoms, infective symptoms, to Chronic Fatigue Syndrome, which is a much wider group of clinical presentations – and we have a whole spectrum of patients there who have an illness ranging from a physical illness at one end to a psychiatric cause of their chronic fatigue at the other.
And it’s rather like putting everyone who’s got a chronic headache – from migraine to brain tumours – under a chronic headache syndrome and saying they all have the same cause, they all have the same treatment and at the moment we have the thing called the NICE Guideline recommending only the psychological side of treatments – Graded Exercise, CBT – for people to whom these treatments in some cases just don’t work, and in the case of Graded Exercise Therapy, makes them worse. So that’s the context of the anger.’
SM: ‘Are you saying the government’s wasting money on the research that’s being done at the moment?’
CS: ‘Well, I think the main complaint about the government funding to the psychological-based research is that’s where all the government pot of money has gone. It hasn’t gone to the biomedical – this has had to be done by the charities, and most of this money has gone into CBT and Graded Exercise and we spent a vast amount of money a few years ago, two to three million pounds on something called the PACE trial, and I think there were again justifiable complaints about that because we felt it wasn’t going to tell us anything that we didn’t already know, and there are things that we do want to know about this illness.’
SM: ‘OK, well one of the things that came up in Tom Feilden’s report there is that there was a suggestion in the United States some years ago that there was a viral basis for this but it has not been replicated. There isn’t a candidate virus that could be causing this, is there?’
CS: ‘Erm, well I think you misinter-preted what’s going on with the virology of this illness which is quite complex. What is agreed is that a wide variety of infections can trigger this illness – glandular fever, parvovirus, hepatitis virus, Q fever infection – where the debate is whether these viruses then persist in the body, and there is conflicting evidence there.
And, if these viruses do persist, should we then be looking at the use of anti-viral medication, which is one of the things the Medical Research Council’s Expert Group on research priorities wants to look at, or should we all abandon all this? And those of us who want biomedical research want the answers to these different aspects of the illness. We want to know more about the virology, we want to whether virological treatments may be effective.’
SM: ‘But don’t scientists want to know that? That’s what seems illogical about this… why would someone be working on something that was ineffective? Why would there be a conspiracy to avoid working on something that might produce results?’
CS: ‘Well, I think the point is the anger stems from the fact that this illness encompasses a variety of -ologies if you like. It involves muscle pathology. It involves brain, immunological abnormalities, endocrine abnormalities and yes there may be a psychological input to the illness in some people – but the anger, the frustration is that all this effort, all this government funding is, or has been, just going to the psychological side.’
SM: ‘You, you had ME didn’t you?’
CS: ‘Um I got involved, like a number of doctors with this illness and really only changed my mind after contracting it myself following chicken pox which I caught from one of my patients.
But I came out of medical school, and I am afraid that this is where a lot of the prejudice among the medical profession comes from, back in the early 1970s – being told at the Middlesex Hospital that this was hysterical nonsense, ‘Go away, forget about it. It’s an illness that doesn’t exist.’ And that’s what I believed before I actually contracted it myself.’
SM: ‘Could, are they not likely to be connected?’
CS: ‘Sorry, what, what connected?’
SM: ‘I’m talking about the sort of the virus and the psychological. I mean there’s sort of such an objection to it having a psychological basis, but one wonders if there isn’t a connection.’
CS: ‘Well, as I say I think we are dealing with a spectrum, a wide spectrum of clinical conditions under this Chronic Fatigue Syndrome umbrella. We have people that we originally called ME – with their muscle, brain, infective-type symptoms. We have people with chronic fatigue, which doesn’t come on following an infection, which seems to appear for a variety of causes, and we are mixing them all up, and this is the problem.
We need to sub-group all of these different people that come under this umbrella and in actual fact because we do now have a Medical Research Council Expert Group on this, this is one of the priorities which we have identified – I am a member of this group – to look at now from the research point of view so we can actually sub-group people with different types of fatigue and give them the right type of treatment. But, until we find the causes of these different types of sub-groups and the role of infection and immunological disturbance, muscle abnormalities, etc, within the different sub-groups, we can’t find effective forms of treatment. And this is not what has been happening, this is why people are frustrated.’
SM: ‘We also I suppose, you would accept, we have a tragedy that we have scientists leaving the field.’
CS: ‘I don’t want to see scientists leaving the field. I want a debate with scientists, and it’s the way I feel we should do it – it’s the way I do it – scientific debate. Criticism is healthy, but it should be conducted through the medical journals. It should be conducted through constructive criticism.
As I said at the start of this interview, intimidation, personal abuse and whatever has no role to play whatsoever in this.’
SM: ‘ Dr Charles Shepherd, thank you very much.’
* Our thanks to MEA member Russell Fleming for providing the transcript.