Can people think themselves sick?
This is what psychiatrist Simon Wessely explores. His research into the causes of conditions like chronic fatigue syndrome and Gulf war syndrome has led to hate mail, yet far from dismissing these illnesses as imaginary, Wessely has spent his career developing treatments for them.
Clare Wilson asks what it's like to be disliked by people you're trying to help
Your most cited paper claims that conditions such as CFS, irritable bowel syndrome and fibromyalgia are all the same illness.
comments
:Wed Mar 11 23:28:52 GMT 2009 by Jill Cooper:
So, according to this government advisor, people who are diagnosed with Chronic Fatigue Syndrome, have 'abnormal illness beliefs'.
First, it would be useful to differentiate here: what does he mean by Chronic Fatigue Syndrome? Does he refer to chronic fatigue (a symptom of a number of diseases, post viral fatigue syndrome, myalgic encephalitis or, to use the National Institue for Clinical Excellence's criteria for diagnosing 'CFS/ME, someone with fatigue and one other symptom which persists for more than six months, or the Canadian Definition of ME/CFS or someone who has been misdiagnosed with CFS/ME and is later found to be suffering from illnesses such as Celiac Disease but is also stuck with the diagnosis of CFS/ME.
Or, which I feel is more likely, is he just referring to his own patients who seem to be suffering from a form of depression?
I have attended several biomedical research conferences about this cluster of illnesses and thoroughly recommend them.
Time is running out for pseudo-scientists. The scientific evidence which negates their childish theories exists. I suggest, people read it.
Thu Mar 12 22:27:34 GMT 2009 by Dr Charles Shepherd:
As a doctor with no mental health problems who developed ME as a result of a chickenpox encephalitis I can fully understand why people with this illness feel so angry when it is so flippantly described as 'almost all in the mind' or 'How people can think themselves sick'.
Having an inaccurate psychosomatic label attached to an illness creates all kinds of practical problems for patients - inappropriate or harmful treatments and refusal of benefits in particular - as well as discouraging biomedical research into the underlying cause.
So please can the New Scientist return to the more objective position on ME/CFS that it took in 2006 (1) when it reported on neurological abnormalities in the spinal cord (ie dorsal root ganglionitis) in a 32 year old woman who had died as a result of having ME and in 2005 (2) when it reported on abnormalities in gene expression - neither of which could be possibly caused by abnormal thought processes.
Won't the members and staff of the Association Francaise du Syndrome de Fatigue Chronique et de Fibromyalgie feel such fools when they realise that no such thing as ME/CFS exists in France - it must be true because Prof Simon Wessely says so!
ReplyDeleteWhat will he pronounce next - no such thing as heart disease in Germany? No cancer in India? What awesome power this man has to eradicate serious illnesses in different countries just by denying them.
If only he would deny the existence of lying psychiatrists with conflicts of interest in the UK, then they'd cease to exist - and he'd stop receiving hate mail.
I'd love to ask this man and his cohorts to show the courage of their convictions and undergo a scientific experiment/enquiry by submitting themselves to a blood transfusion with blood from members of the 25% group.
ReplyDeletehey dr speedy, SW is odious in his beliefs... you possibly already know that the NICE guidelines in UK survived the judicial review... it's such an abuse of power and i don't honestly know where we go from here... i also find it all a bit too cosy that SW is giving interviews only a couple of days before the NICE judge gave his verdict...why is SW rearing his head now, specifically?
ReplyDeleteHow might most of us experience the effects of the mind on the body?
ReplyDeleteIn an average week you probably experience numerous examples of how what's going on around you affects your subjective health. Most people instinctively know that when bad things happen, they affect your body. You can't sleep, you feel anxious, you've got butterflies in your stomach... you feel awful.
When does that turn into an illness?
Such symptoms only become a problem when people get trapped in excessively narrow explanations for illness - when they exclude any broader consideration of the many reasons why we feel the way we do. This is where the internet can do real harm. And sometimes people fall into the hands of charlatans who give them bogus explanations.
He has replied in the comments to his interview - it didn't take him long to gloat over the GOBSART Judicial Review ruling.
ReplyDeleteHow much suffering can one man inflict on seriously ill people? It may be financially rewarding to pretend that M.E., Lyme disease, fibromyalgia, Gulf War Syndrome, Organo-phosphate poisoning and the Camelford Water poisoning incident exist only in the sufferers' minds, but it certainly isn't moral.
Response From Prof Wessely
Wed Mar 18 17:47:52 GMT 2009 by Simon Wessely
It is dispiriting to see personal abuse and the occasional untruth surfacing amongst other heartfelt responses to the interview between Clare Wilson and myself. Whilst I stand by the content of the interview, I must point out that the original choice of headline for the web version ("Mostly in the Mind") is not a phrase that I have ever used in my career. I can understand why that would provoke outrage.
In science progress comes from robust debate, as long as it is conducted with mutual respect, and centered around research as opposed to character. Unfortunately these are rules that are not always followed in this particular area. For example, in the website responses one supposed comment of mine is used to demonstrate my alleged contempt for sufferers. Several people claim that I ocne wrote about CFS/ME patients as follows: "The average doctor will see they are neurotic and will often be disgusted with them". If those were my words or views, I could understand the reaction. But they are not. It was a comment made in 1935, that I quoted in inverted commas in full (the quote concludes "many of them suffer the tortures of the damned) in a paper I wrote in 1990 in which I suggested that not a lot has changed since then, and that many contemporary patients with CFS still get a raw deal from some doctors. The full paper is called "What is wrong with the patient who feels tired, weak and toxic" and was in the New England Journal of Medicine in 1935.
Many posters cite studies suggesting that cognitive behaviour therapy (CBT) and graded exercise is ineffective against CFS/ME, and makes many people worse. But far more studies have shown the opposite - that both can help patients. This is confirmed by systematic reviews, meta analyses and Cochrane reviews, generally accepted as the best way of assessing the quality of research evidence in every other sphere of medicine.
Since publication of the interview I have received a stream of e-mails to my own account. One or two have been abusive. But most have not. Some describe their own experiences, others are complimentary. It is a pity that these correspondents did not post their responses on the website. But if you look at how dissent is greeted, it is understandable.
Which brings me to my final point. Many of the web responses make a plea for more "real" scientists to address the problem of CFS, by which they mean those who are not psychiatrists or psychologists. They may be surprised to learn that I fell the same. So why are those in the basic or laboratory sciences so reluctant to enter this area, as is undoubtedly the case?
One day after the publication of the NS interview with myself, Mr Justice Simon handed down his judgement in the judical review of the NICE Guidelines on CFS/ME (see http://www.afme.org.uk/res/img/resources/ApprovedJudgementNice.pdf). The Nice Guidelines concluded that the treatments with the best evidence of effectiveness for the treatment of CFS are at present CBT and graded exercise. Two patients had challenged the guidelines in court, claiming they were flawed and that those who had created them were biased. Mr Justice Simon unequivocally rejected these claims, adding
"unfounded as they were, the allegations were damaging to those against who they were made, and were such as may cause any health professional to hesitate before they involve themselves in this area of medicine. A perception that this is an area of medicine where contrary views are not to voiced, and where scientific inquiry is to be limited, is damaging to science and harmful to patients"
The French Chronic Fatigue Syndrome and Fibromyalgia Association replied to my email informing them of Simon Wessely's statement that they do not have CFS in France:
ReplyDelete" Yes, we have.....and more and more young people!"
They are going to have this article translated.
Take 240,000 people with broken legs
ReplyDeleteMix them up together with people with mild leg pain under the umbrella term 'Chronic Leg Pain Syndrome'.
Deny them adequate biomedical testing such as x-rays in case they might actually think themselves ill.
Deny them any biomedical treatment and insist their condition exists only in their minds.
Give all research funding into broken legs to psychiatrists.
Set up clinics for 'Chronic Leg Pain Syndrome' that offer only Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy(CBT).
When the people with broken legs become worse tell them they are thinking themselves ill. If the people with mild leg pain recover, claim a huge success for your treatment.
Section people with multiple leg fractures under the mental health act. Forcibly remove them to locked mental wards and make them do GET & CBT. Remove children with multiple leg fractures from their parents & accuse the parents of Munchausen by proxy.
Far fetched? Myalgic Encephalomyelitis has been classified as a physical illness by the World Health Organisation since 1969; it is not a mental disorder.
Instead of the biomedical research, testing and treatment that M.E. sufferers need, they have been deliberately mixed up with people suffering from other fatigue conditions, including depression, under the umbrella term 'Chronic Fatigue syndrome. The CFS clinics, set up by psychiatrists, offer only GET & CBT.
Severely affected M.E. patients have been sectioned under the mental health act (one died of M.E. as a result) and children with M.E. are being taken into care.
There has been no government funding of biomedical M.E. research; all funding has gone to psychiatrists.