From ‘The Spectator', 26 August 2011 (think piece by Professor Simon Wessely)
Mind the gap: it's time to stop separating psychiatry and neurology
In 1987, I went to work as a trainee psychiatrist at the National Hospital for Neurology in Queen’s Square in London. One of my jobs was to see a group of patients who were not popular with the neurologists who ran the place. The patients had symptoms that might have had a neurological explanation — muscle pain, inability to walk, being unable to think clearly, feeling exhausted after the most minimal physical or mental exertion — yet the neurologists thought that they were at best suffering from depression or at worst swinging the lead. They found it irritating that the patients insisted they had an illness called ME (myalgic encephalomyelitis). ‘I can’t understand why they think it’s an encephalomyelitis,’ one neurologist told me. He was a world expert on encephalomyelitis, an extremely rare and usually fatal inflammation of the brain. He then referred a patient to me with a note: ‘Dear Simon, please see this patient. There is nothing wrong with her.’
But there was. The more I saw, the more convinced I became that the condition was a genuine, serious, debilitating illness. Doctors never liked the term ME, however, and soon afterwards we started to follow the American lead and call it Chronic Fatigue Syndrome (CFS). At that time, patients at ‘the Square’, as the hospital was called, were usually told that the only thing they could do was to rest and either hope that the condition would go away or that doctors would come up with a magic bullet.
I started, with a group of other doctors, to try to do better. Over the next two decades, we developed two different approaches to rehabilitating CFS patients, based on the idea that even if we didn’t know what caused the illness, we could still help patients manage their symptoms and regain control of their lives. Our two approaches were named Graded Exercise Therapy and Cognitive Behaviour Therapy. The evidence soon showed that they worked. In 2007, some 20 years after we started, the National Institute for Health and Clinical Excellence approved both treatments as safe and effective.
I am proud of what we achieved. We set up what was the first and is now probably the largest NHS service for CFS sufferers. We have now seen over 3,000 patients, and the majority of them are very grateful for the treatment they have received. Trawl the internet, however, and you will find some who claim that I and other professionals are the architects of a vast conspiracy to cover up the real nature of the illness, that we portray CFS sufferers as malingering neurotics. They say we are denying its sufferers their treatment and benefits by falsely claiming that the condition is ‘all in the mind’, i.e. non-existent— which has never been our view. The evidence is that, like most illnesses, CFS is a mixture of the physical and the psychological.
Our critics have devoted much energy (irony intended) to denouncing us as pawns of the drug or insurance industries. I have been called a new Dr Mengele, the next Dr Shipman; somebody said that my wife is a ‘rat who should be thrown into a cage with infected mice’. One blogger wrote a post addressed to me in which he called me ‘the born personal physician of Heydrich, Goebbels or Hitler’. I am frequently accused of having thrown a CFS-suffering child into water to see if he would sink or swim.
OK, let’s keep a sense of proportion. It’s only a small number of people who do this. I have been seeing CFS sufferers now for over 20 years and our patients bear little resemblance to the internet extremists. They are perplexed, uncertain, and desperate for help from whatever quarter, provided that they are treated with respect by someone who believes they are ill. Nor are they anti-psychiatry.
For the outraged minority, however, being referred to a psychiatrist or psychologist is tantamount to being told that the symptoms are imaginary. It is understandable that people are sensitive on this matter. But the solution must be to address their misunderstandings, rather than assuming that CFS will only be taken seriously when psychiatrists are removed from the scene.
My mother told me that to specialise in psychiatry, I would need a thick skin. Usually I have one. But three things here anger me. First, the repeated claim that we don’t think our patients have an illness. They do, and to say otherwise is insulting.
Second, even if you don’t think that the treatments we pioneered are for you, it is wrong to try to stop others from benefiting from them. At present, the treatments pioneered at Queen’s Square are the best we have. They are by no means a cure — but nor are the treatments that we offer to sufferers from rheumatoid arthritis, MS, Parkinson’s, schizophrenia and many more. No one would advocate leaving them without any prospect of treatment.
And last, the malign tactics of the minority have helped to delay scientific progress: numerous scientists in other fields, including neurology, immunology and virology, have dipped their toes in the water of CFS, been scalded and given up.
It’s not so much the threatening emails and blogs that rile. It’s the more insidious stuff, the efforts to prevent my colleagues and me from doing our work: the bogus allegations of misconduct to ethics committees; the ridiculous claims to journals that we have hidden conflicts of interests; the long dossiers of imaginary sins sent to colleagues — the claims go on and on. The worst is the deliberate falsification of what we have said or written: quotes are circulated with the essential word ‘not’ deleted, for instance. And transcripts of our speeches are sometimes altered so that ‘yes’ becomes ‘no’.
How has it come to this? In the 19th century, psychiatry and neurology were not really separated, and even at the start of the 20th century, psychiatrists were still interested in the science of the brain, while some neurologists were skilled in the growing field of psychological rehabilitation. But the influence of Freud and his followers — who did believe that many illnesses were ‘all in the mind’ — led to an increasing separation of the two disciplines.
By and large, the current generation of psychiatrists accept that many disorders — autism, schizophrenia, bipolar, OCD, Alzheimer’s and others — are disorders of brain function. Yet the division between neurology and psychiatry remains. It is almost impossible, for example, to train in both fields in this country, unlike in Germany. A few years ago, I attended a US conference in which a scientist proposed that what was needed in CFS was more brain imaging. ‘If we could identify the problem with the brain, we could tell patients it’s not all in their heads,’ he said, without apparent irony.
We should not accept this separation. The Medical Research Council allocates funds via a single board for both neurosciences and mental health. The World Health Organisation, which runs something known as the International Classification of Diseases, a Sisyphean attempt to bring order to diagnostic chaos, is now working on yet another revision. They should think seriously about following the MRC lead and merging psychiatry and neurology into one category. This would rid us of the ‘all in the mind’ slur, and let us get on with our jobs — improving the treatment of patients and their illnesses.
If Professor Wessely believes that we need more brain imaging to help us prove there’s really something wrong with us, it’s surprising that he and his fellow psychiatrists with all their influence, haven’t made brain scans obligatory for his patients.
Perhaps he would like to spend some time with Dr Byron Hyde in Canada and learn how they diagnose M.E. at his clinic.
Oh Simon, you sound so reasonable here. And yet before you and your colleagues, Peter White, Michael Sharp and Trudy Chalder became the ‘experts’ in CFS, there was a neurological illness called ME. You have done your best to hide it under the label CFS – rather like calling Alzheimers “Chronic Forgetfulness Syndrome”.
People with Myalgic Encephalomyelitis then were treated with more respect, not less. How many of us get better under your regime? Most of us who have ME and are put through your ‘treatments’ get worse, some much worse. Remember Sophia Mirza? Lynn Gilderdale? May they rest in peace.
You have done so much to include ME in Chronic Fatigue, with your input into the NICE guidelines (precluding biomedical testing), your position as pundit for the Science Media Centre on all things CFS and ME, your recent studies spending millions of pounds of public money and coming to no real conclusions.. and we are still sick. Many of us have been sick for decades. More and more people are getting this devastating disease.
Remember what you said in the BMJ podcast of 5th March last year in the wake of the discovery of a retrovirus in a large percentage of us?
“We’re not going to go on doing more and more tests to find what was the virus, because frankly even if we found it there’s nothing we’re going to do about it, we’re in the business of rehabilitation.”
(at 11.24, http://podcasts.bmj.com/bmj/2010/03/05/chronic-fatigue-syndrome/)
For a full, referenced understanding of Prof. Wessely et al’s involvement in the obfuscation of a neuro-immune disease, as devastating as AIDS, MS, and Cancer (and perhaps, a form of AIDS) see here: http://www.meactionuk.org.uk/Corporate_Collusion_2.pdf
Prof. Wessely is perfectly entitled to his opinions but what he is not entitled to do is take over the British Media and constantly bombard it with his own views. If the psychosocial model of ME was the correct viewpoint, then considering the past 20+ years have been spent concentrating exclusively on this approach, we would now have ME managed and its symptoms alleviated. The only research funded by this country for all these years has been on CBT; graded exercise; antidepressants etc, We still have vast numbers of severely affected sufferers, whose symptoms and illness is not addressed by these methods. To ignore all the biomedical research that has been done around the world is to condemn still further, sufferers to a life-sentence of crippling debility and distressing illness. I find it hard to understand how symptoms that do not fit the psychosocial model of ME are just ignored and brushed aside and any physical findings just dismissed.
I think the response has been poor to all this from the ME Charities, ME patient representatives, and Specialists/Researchers who are still actively involved in biomedical research and if this damaging media coverage is allowed to continue, than I think it will not be long before the WHO classification of ME is revised. There has not been anything highlighted in the media about the ME Biobank being set up; the international Consensus on ME; research papers over the past 12 months regarding muscle, immune and cardiac findings. This situation is NOT acceptable – we deserve better.
Prof. Wessely really is a man on a mission lately, twisting turning and subtly shifting/ modifying his position.
To the external observer, what he writes probably appears to be entirely reasonable and highly plausible. However the reality of what he does is much more macheavellian.
The real disservice that this man and his carefully crafted spin does to patients, is to legitimise a false illness paradigm, both in the minds of decision makers and of the public. Patients are thus denied access to appropriate diagnostic tests and biomedical treatments.
If Prof. Wessely acknowledged that psychiatry should logically occupy a subservient role in providing support to M.E. patients, whilst also advocating the elevation of biomedical research to its rightfully dominant place, then few people would take issue with him. The fact that he doesn’t,and that he actively seeks to downplay the biomedical evidence, says much about his disregard for those that suffer as a result.
E-mail address for Spectator letters
I see the Spectator have http://www.spectator.co.uk/corporate/contact-us/
——
LETTERS FOR PUBLICATION
Do you have a comment/letter you would like to submit for publication?
letters@spectator.co.uk ——
Can anyone see the longest and shortest letters. There is a chance a magazine might not want a very short letter e.g. 50 words, so I’d like to have an idea what sort of letters they like. Should be useful for other people also.
He thinks he’s in a war movie, I swear. He’s trying to take over the world. He’s a very sad man.
Quote from: Dolphin on Yesterday at 11:45:22 PM
Anyone able to see what sort of lengths of letter they publish? Doesn’t have to be current edition. I’ve done a draft that is over 300 words – this would be very long for a national newspaper but I want to know should I edit it down or not before sending it in as perhaps, because of the format, they like longer letters. (PM me if for some reason you prefer)
Looks like I’ll have to shorten my letter – drat.
Hopefully, others will be writing letters to the Spectator in reply.
Letters go to: letters@spectator.co.uk (letters @ spectator.co.uk)
Found the Spectator letters on the site. 🙂
Spectator Letter word lengths for last two weeks – I’ve combined them to increase the sample size (from http://www.spectator.co.uk/politics/all/7189868/letters.thtml and http://www.spectator.co.uk/politics/all/7174733/letters.thtml )
The word counts include counting bits like “letters, August 20”:
42, 45, 46, 112, 113, 122, 140, 158, 187, 238, 272, 289
So 12 letters or average of 6 per week.
Range: 42-289 words
Median length: 131 words
0-100 words: 3 (25%)
101-200 words: 6 (50%)
201-300 words: 3 (25%)
301+ words: 0
Commenting on pieces from the last edition: 8 (67%)
Commenting on pieces from the second last edition: 2 (17%)
Commenting on pieces from the third last edition: 1 (8%)
Perhaps no specific edition: 1 (rioters) (8%)
So again, best to get them in reasonably soon so they can be considered for next week’s edition.
Prof: Wessely says one of the things that anger him is
“Even if you don’t think that the treatments we pionered are not
for you, it is wrong to stop others from benefiting from them”
How about those who DON’T BENEFIT from these treatments,
(C.B.T. and G.E.T.)
Is it not wrong to to “hold back” biomedical tests and research that may benifit some people???
Did Simon Wessely perhaps get the idea for this article from Oliver sacks awakenings? .Heroic doctor or in this case pioneering psychiatrist finds patients in dusty corridor or corner of hospital somewhere .With very little support or in this case lots of support from peer group fights against all the odds or persons with ME to highlight the plight of those afflicted. Eventually he succeeds in making marginalised ignored group of ME sufferers even more unpopular and undeserving than before .Thanks Simon for your wonderful work?
I submitted this to The Spectator
Prof. Wessely argues that neurology and psychiatry should be reunited. But, for the case of ME/CFS he rejects the use of objective biomedical tests such brain-imaging, claiming that this would cause a separation. It seems for him a reunification would mean substituting subjective psychiatric opinion for objective neurological tests – at least for ME/CFS. There is already evidence of biomedical neurological abnormalities in ME/CFS. Why prevent patients form having objective tests? Why prevent his opinions from undergoing rigorous scientific testing?
In most diseases, if the treatment does not suit the patient, that treatment is discarded. The ME/CFS experience is that the patient is required to suit the treatment. If he/she does not, the patient is discarded.
Prof. Wessely complains that his speeches have the word ‘not’ added or deleted. Does that mean that when he says that ‘No investigations should be performed to confirm the diagnosis’, the ‘no’ was never intended to be there?