This post was originally posted on March 19, 2009 at Hoyden About Town.
New Scientist this week published an interview with infamous psychiatrist Simon Wessely. Wessely persists in believing, in the face of all the evidence, that Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME)* is a uniquely UK/American psychological condition caused by internet-triggered “faulty illness beliefs”.
Here’s a bit. Read the rest at the link.
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.
How might most of us experience the effects of the mind on the body?
In 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. [...]
What about those people who have such severe CFS they are bedridden?
In that kind of disability, psychological factors are important and I don’t care how unpopular that statement makes me. We also have to consider what those years of inactivity have done to their muscles. People know that if you break your leg, when you take the plaster off there’s nothing much left. If you’ve been in a wheelchair for some years, the laws of physiology haven’t stopped.
Your most cited paper claims that conditions such as CFS, irritable bowel syndrome and fibromyalgia are all the same illness.
If you ask people with irritable bowel syndrome whether they suffer from fatigue, they all say yes. It’s just gastroenterologists don’t ask that question. Likewise, if you talk to someone with CFS, you find that nearly all of them have gut problems. If you systematically interview people with these illnesses, you find that a big proportion of these so-called discrete syndromes have a large overlap with the others. You have to think that we have got the classifications wrong.
So do you think these syndrome labels are arbitrary?
Each country has different syndromes. They don’t have CFS in France; they have a strange one, spasmophilia, where a person has unexplained convulsions. In Sweden they have dental amalgam syndrome, which hasn’t really caught on here. In Germany they believe low blood pressure is bad.
Where does Gulf war syndrome fit in?
I’d read about people with Gulf war syndrome in newspapers. They looked incredibly like my CFS patients except they were in uniform. [...]
Wessely gets taken apart in the comments.
Unfortunately, many doctors believe him. Other folk do, too, because of the credulity lent his theories by his medical degree. No matter how much they’re debunked. No matter how much the people right in front of their faces talk about their own experience.
It’s demon possession, hysteria, multiple sclerosis, and hyperemesis gravidarum all over again.
Why can they not see this? Because they don’t want to admit that they don’t know everything, perhaps? I think that’s a component, but there’s more to it.
Here’s my current take: These psychologisers are believed, because they are the people who are reinforcing existing prejudice. I think that popular conceptions of CFS are heavily gendered: If a disease is suffered more often by women, we all know they’re doing it to themselves, don’t we? And if people – especially women – have diseases we don’t understand, they must be to blame somehow. We’re not very comfortable with uncertainty, we don’t like “shit happens” as an explanation.
We seek to blame, and who better to blame that the people who we see at the centre of the problem – women with disabilities? The shadows of victim-blaming rear their ugly heads again and again and again within every axis of oppression, and those shadows are multiplied at the intersections**.
And so, people with disabilities are abused – medically, socially, financially, and psychologically. Every day. Because of people like Wessely who are “just trying to help”.
I just can’t write much on this. It sends me into white-hot. Over to you.
* Note here that I’m not talking about “I’ve been feeling a tad under the weather” chronic-fatigue. I’m talking about the full-blown syndrome, a distinct entity which is not burnout or overwork or stress or vitamin deficiency or fat or lack of exercise.
* Also, because I’ve seen conversations devolve in this direction when psychosomatic theories are discussed and rebutted: I’m not speaking of mental illness, which carries its own distinct set of prejudices and abuse. When people with CFS resist a primary psychiatric/hypochondriacal diagnosis, it’s not a “protesting too much” born out of prejudice against people with mental illness; it’s because we’re not mentally ill. (Unless there’s a co-morbidity.) It’s because misdiagnosis and treatment aimed at a mental illness does not help us, and causes us harm.
** Yes, I did just re-watch Silence in the Library and Forest of the Dead; why do you ask?