CFS/ME and “faulty illness beliefs”: The incredible hubris of the psychiatro-patriarchal complex

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.

Mind over body?

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?

12 thoughts on “CFS/ME and “faulty illness beliefs”: The incredible hubris of the psychiatro-patriarchal complex

  1. See, here’s where the “mind over body” argument runs into a solid wall of fail for me, apart from the obvious stupidity of it in the first place: I started having the symptoms of fibro and CFS when I was five years old. And I hadn’t even heard of either term until I was diagnosed at twelve. So how on earth is it possible to argue that I “thought myself sick”? The sheer lack of logic behind the argument would be laughable, if it weren’t for the fact that so many people actually believe it.

  2. “a distinct entity which is not burnout or overwork or stress or vitamin deficiency or fat or lack of exercise.”

    Why is fat on that list? No, really. Why is fat on that list?

  3. “Why is fat on that list? No, really. Why is fat on that list?”

    Because, like all the other things on the list, doctors often falsely attribute chronic fatigue to it. I agree that it isn’t written very clearly – I was pretty heavily fogged when I wrote this.

  4. Huh, I resisted vigorously the idea that I was chronically ill for a long while – like many go-go-go types, I just couldn’t believe that my body wasn’t going to bounce back.

  5. I thought it was all in my head too, until I started throwing up at inopportune times, and tests revealed nought wrong with my stomach lining.

  6. There’s a lot more to it than Wessely- the head honcho of the CDC’s CFS Research Program, Bill Reeves, is on record several times saying he doesn’t believe CFS to be a disease, but rather an ‘illness’ which affects the ‘female gender’, as opposed to the female sex, which is commonly cited to be more susceptible to autoimmune diseases, MS, etc. Why the ‘female gender’, you might ask? According to doctor Reeves, because ‘women are treated differently than men in society’.

    CDC has refused to replace Dr. Reeves despite the unanimous recommendation of the Chronic Fatigue Syndrome Advisory Committee, which advises the Sec. of Health and Human Services(who also doesn’t listen to their recommendations), as well as the IACFS/ME, the largest CFS/ME professional’s group in the world and the nation’s largest patient charity, the CFIDS Association, not to mention who knows how many patients themselves calling for his replacement at CFSAC and other public meetings.

    (note- when Dr. Reeves comments about more men than women suffering from ‘CFS’ in rural areas, it should be noted that he is using a definition of CFS which no other research group in the entire world uses and which the IACFS/ME recommended CDC not only stop using, but to actually make a public statement in this regard.

    It has been shown that more women than men suffer from CFS, generally by a 3 or 4:1 ratio, similar to MS, since what is commonly regarded to be the first outbreak of Myalgic Encephalomyelitis(ME) in 1934, ME being the disease which CDC renamed CFS in the mid-eighties after outbreaks in the US.)

    Quotes-

    Reeves- “We look upon CFS as a complex illness, not as a disease. Diabetes is a disease with metabolic pathways involved. CFS is an illness from which various diseases spring.”
    William C. Reeves, CCRP Program Leader
    http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac070516min.html

    “The data pose a pivotal question: Are the results due to sex (the fact that women have two X chromosomes and men have one X and one Y—primarily a genetic influence) or do they reflect gender? Gender is described as women’s role in their particular racial/ethnic group and society; the ways in which they have to function differently because they are women.”
    William C. Reeves, CCRP Program Leader
    http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac071128min.html

    “Host: Sidenote, you said that there’s higher numbers in the rural areas than you expected.
    Dr. Reeves: There were- actually not higher numbers in the rural areas, we asked the question about women.
    Host: Ok.
    Dr. Reeves: Ok women are very high risk.
    Host: Ok.
    Dr. Reeves: And women are women because of their sex.
    Host: Right.
    Dr. Reeves: Women are treated differently in society than men are.
    Host: Ok, so wait, I was wrong though about the rural, I thought you said-
    Dr. Reeves: It’s gender. What was different in metropolitan and rural is 5 times as many women than men in metropolitan areas have it, twice as many men as women have it in the rural areas.
    Host: Huh.”

    http://www.gpb.org/georgiaweekly/2007/12/30
    http://sacfs.asn.au/news/2009/09/09_26_transcript_dr_reeves.htm

  7. This whole thing makes me very Hulk-ish, and I almost didn’t read it when I say Wessely’s name in the opening paragraph, but I think it’s important to know who your enemies are (even if you haven’t yet got a clue how to defeat them), and Wessely and Reeves are definitely on that list for all people with CFS/ME. Let’s say that Reeves isn’t a thief (or at least a co-conspirator in the theft of millions of dollars that were supposed to be dedicated to CFS research) and a sexist (see John’s quotes in the above comment), he’s still unable to change his mind about his pet theories even in the presence of actual, scientific evidence. In response to the recently published,(hopefully groundbreaking and game-changing) retrovirus research findings from the Whittemore Peterson Institute, for example, Reeves could only say that he was surprised the article was published, and that he didn’t expect that the CDC would be able to replicate their findings. Really? So the National Cancer Institute and the Cleveland Clinic – those aren’t prestigious enough researchers for the CDC? Granted, yes: it’s a small study, it’s a new and intriguing finding which may have some controversial points that still need to be worked out, but to say that they’re wrong to publish it? To pretty much guarantee that the presence of XMRV is not a repeatable finding, and to suggest that, even if it were, it wouldn’t mean anything? That’s not scientific – it’s bullheaded and dangerous, and we are supposed to believe the the CDC is actually working for the patient community? Outrageous.
    .-= NTE´s last blog .. =-.

  8. You’ve hit the nail on the head, cinderkeys! That’s what intersectionality is. The various axes of oppression and privilege – disability, race, class, sexuality, gender, age, size, nationality, etc etc etc – all interact and intersect and multiply. It’s a web, not a linear scale.

    Being on the sharp end of one kind of oppression is different from being on the sharp end of two, or three, or more. Which is exactly what this blog is about.

  9. Yep. I used to teach a women’s studies class.

    But as a feminist, advocate for the ME/CFS cause, and former wannabe-sociologist, I’d like data. On average, do women have it worse than men when they see doctors for invisible illnesses? If yes, do men get taken more seriously simply because they’re men, or does the effect go away when controlling for how often women and men see doctors?

    I don’t have a hypothesis. It could go either way. But it would be a good thing to know.

    In any case, I think YOU’VE hit the nail on the head as regards the whole blame-the-victim mentality. Thinking of people as disturbed rather than genuinely suffering seems to make a lot of friends and family members happy somehow. They can cling to their assumption that the universe is fair, and don’t have to ponder the harsh realities of what it’s like to live with chronic pain.
    .-= cinderkeys´s last blog ..Loud =-.

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