Simon Wessely: more sinning than sinned against

Picture of Simon WesselyIn the current New Year honours, Professor Simon Wessely has received a knighthood and will henceforth be known as Professor Sir Simon Wessely. In this he joins the company of Roy Meadow, the doctor who testified against various mothers who had lost multiple babies to cot death, leading to at least three of them being jailed for murder until his errors were unveiled by the BBC. It has already been commented that the knighthood also went to Jimmy Savile, recently exposed (albeit posthumously) as a prolific sex offender, and that the awarding of knighthoods to pop stars and to athletes who have only just proved themselves somewhat devalues them. However, professors, civil servants, military officers and the like do not get knighthoods unless they really are seen as distinguised, so this demonstrates that Wessely is very much an establishment figure.

The adding of an extra title to Wessely’s name, regardless of all the pop stars and the odd sex offender, gives Wessely an extra bit of credibility that could be used when his authority is challenged. When the BBC’s weekly investigative programme, File on Four, was investigating the convictions against grieving mothers which were achieved using Meadows’ faulty statistics, the investigator, John Sweeney, pointed out to Jean Golding, a Bristol epidemiology professor who was challenging Meadows’ claims, that the latter was “a distinguished scientist, and a knight”, a claim that might in future be made regarding Wessely when his ‘expertise’ regarding ME, which is what the controversy surrounding him is all about (even though his citation only mentions his mental health work in the armed forces — PDF list of higher awards here), is brought into question — all the more so if those questioning him can be made out to be a bunch of conspiracy-minded, intolerant lunatics.

I became aware of the huge gulf between what ME patients think of Wessely and what his colleagues and the media think of him early on in my involvement in ME campagining. Patients spoke of exercise treatments that made them worse, of talk therapies which were ineffective or which made them worse, of hostile involvement from doctors who believed that their illness was psychological, and of outright abuse. The term “Wessely school” was used to refer to the group of doctors who regarded ME as being in the realm of psychiatry. However, the newspapers invariably treated him sympathetically and portrayed the ME campaigners as being at best desperate and at worst paranoid. Take this example, from the Guardian in May 2010:

Listen to some – or read the internet – and you would think there is a massive organised conspiracy going on, led by the psychiatric community, but in conjunction with insurance companies and even government, to prove ME has no physical cause. … Most of the internet vitriol is directed at psychiatrist Professor Simon Wessely from King’s College London, who believes there may be viral triggers for the disease but who pioneered the psychosocial therapies, ran the studies on which Nice’s guidance is based and started the first NHS treatment unit. One of the reasons why the first UK study to fail to find XMRV in patients was denounced by ME/CFS activists is that it was co-authored by Wessely.

Picture of Lynn GilderdaleThere was another round of media denunciations of ME activists in summer 2011 and this was also accompanied with fawning press coverage of Wessely himself. Wessely had an article published in the Spectator in August 2011, in which he called for the divide between neurology and psychiatry to be abolished so as to “rid us of the ‘all in the mind’ slur”, as he calls it. This is another variant on the “mental health stigma” argument which is advanced almost any time ME sufferers object to being classified as mentally ill, and is a red herring because ME is not treated as if it were a major psychiatric illness, such as bipolar disorder or schizophrenia, but as a behavioural or psychological problem and a product of deconditioning, and at worst, as malingering or timewasting. Wessely also described how a female patient he had been told to treat, who supposedly had “nothing wrong with her” according to a neurologist at Queen Square who Wessely describes as an expert on encephalomyelitis, in fact had a serious debilitating condition, and he and some of his friends worked on developing approaches to rehabilitating such people using Graded Exercise Therapy and Cognitive Behaviour Therapy.

Wessely seems to get a lot of soft-soap interviews, because the assumption remains that ME is characterised by chronic fatigue and patients like those he encountered at Queen Square are given as typical. Nobody ever asks him about patients who are severely affected and who have very clearly measurable pathologies which cannot possibly be matters of mere behaviour or of psychiatric origin. Some of them cannot speak and are physically incapable of undertaking any graded exercise programme; some would pass out if even sat up in bed. Worse, some of the patients treated by his team have turned out not to have any psychological condition at all, nor even ME, but a physical disorder which could be diagnosed by anyone who knows about the condition, such as Ehlers-Danlos syndrome. There is a first person account of this here by someone recently diagnosed with EDS, which is significant because the author gives her name (she was known by another name at the time), describes the psychological approach which is very familiar to ME sufferers:

It was my Neuro who said I had ME and suggested I could be managed by my GP but gave me a referral to Prof Wessley’s team in London. I remember going with my sister in my recently received NHS/red cross wheelchair and seeing a registrar from Wessley’s team. We talked for over an hour, I walked for him, he did an examination and he told me at the end I didn’t have ME. The bit that scared me though, was his remarks about my mental health and the ‘rules’ he suggested I followed. He told me that I should have another round of investigations from the Neuro team at Addenbrookes but that once they’d come back negative I would have to accept that I had a mental illness, Somatoform Disorder. It was his ‘suggestions’ for my life style that really changed me though. He told me that I needed to adjust my thinking totally, that if I chose to adopt the ‘disabled lifestyle’ doctors would always think I was making my self ill. A few of his suggestions included not using a wheelchair or walking aids, not spending time with any disabled people, not using the internet to communicate with disabled people, ignoring all my symptoms and going on with college no matter what and no longer requesting to see other doctors. It didn’t just stop there, he talked about how everything made me look like I was faking, he told me that asking to see other doctors would make it look like I was hoping one of them would diagnose something and that spending time with other disabled people would make it look like I was learning ‘how to be disabled’. The letter this doctor wrote about me was 4 pages long and it sparked the beginning of my battle against a mental health diagnosis. It also sparked to battle against doctors who believed entirely that I was making this all up.

You might think these ‘rules’ are stupid and that doctors don’t really behave or think like that, but you’d be so terribly wrong. A few years later, I visited a neurologist with a good friend in a different part of the UK. I went in to her appointment with her (in my manual wheelchair) to support her. I was shocked and disgusted when within moments of the consultation beginning his attention turned to me and what I was doing in a wheelchair. He was so horribly rude that my friend was incapable of driving for almost an hour. And it didn’t stop there, we were both astounded when his report came through and the first paragraph was about the friend she’d brought with her. It was made very clear that her illness was taken less seriously because the support network she had included disabled people.

Picture of Emily CollingridgeThe fact that this author was subsequently diagnosed with an unrelated connective tissue disorder which often manifests with chronic fatigue and has other common symptoms with ME (those affected often have Postural Tachycardia Syndrome or POTS, and some are bedbound from it), demonstrates that Wessely’s team have a bias towards psychologising symptoms and are ignorant of the physical conditions that can produce symptoms which resemble those of ME. I know of six people who have EDS and have had wrong ME diagnoses for several years, so anyone attempting to treat ME or chronic fatigue should be educated about this condition, particularly as it can have severe respiratory or digestive complications. I have also people say on many occasions that the manner in which they were treated improved once their ME or CFS diagnosis was struck out. The same soft-soap interviewers and fawning editors who give him airtime also do not ask him about the very strong evidence for viral involvement or about the epidemiology of ME, often preferring to emphasise the fixation on XMRV when reporting anything to do with ME and discounting any other viral theory (for example, the Lipkin report, which disproved XMRV, was reported in some British newspapers as having disproved that ME was caused by any virus).

Wessely has a lot to answer for, and the elements in the ME community that are hostile to him are not fringe cranks but mainstream patient advocacy organisations — basically all those that are not heavily influenced by his friends (such as AYME). It is not always true that there is no smoke without fire, but there is rarely this much smoke without any fire. The press has exposed an ‘expert’ who has caused enormous suffering with dubious science in the recent past, regardless of his titles and the letters after his name; they should stop airing Wessely’s evasions and circumlocutions and his tales of persecution and ask him the serious questions about the holes in his theories which are obvious to the patient community.

I saw a number of my friends in the disability community, including ME sufferers, retweet some of the above tweets from Dr Christian Jessen and reply to them. Dr Christian, as he is commonly known, is a TV doctor who is perhaps best known for appearing on the Channel 4 series Embarrassing Bodies. I commented when I saw this that it was typical of a privileged person criticising the “tone” of an oppressed person protesting or showing distress, a common allegation made by race or gender activists — that they are told they should not be so angry, or some such thing. For him to express pleasure at Wessely’s knighthood and then accuse ME sufferers of “snapping” at him shows that he does not have the first clue about what they are suffering, which often includes abusive or dismissive treatment by the medical profession as well as the intense suffering the illness itself can cause.

What they need is someone who already believes they are suffering a genuine physical neurological illness and is committed to finding a physical cure, not someone who comes proclaiming his admiration for Wessely, complaining of sufferers’ hostility and then asking them for help. There are experts who could tell you what you need to know about what ME is, what causes it, what its symptoms are and what the best treatments are: Dr Nigel Speight, Prof Malcolm Hooper, the people who run Invest in ME, and Jane Colby of the Tymes Trust are the best known in this country. An ME sufferer will not know more than how the disease affects them, and possibly some of their friends, so it’s not fair to ask them to explain their illness and explain why Wessely is wrong. Go and ask the experts — that is what they are there for. Sufferers should also not get drawn into trying to educate people like this; they can easily go and find out the facts for themselves and can much more easily get an audience with those who know the medical facts than most people with ME (or any other lay people) can.

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