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 vigourously resist a primary psychiatric diagnosis, it’s not a “protesting too much” born out of prejudice against people with mental illness; it’s because they’re not mentally ill. (Unless there’s a co-morbidity.) It’s because the diagnosis of a mental illness, and treatment aimed at a mental illness, does not help them, and causes them harm.
** Yes, I did just re-watch Silence in the Library and Forest of the Dead; why do you ask?
This is a safer space for PWD, not a debate thread. Comments will be moderated as I see fit.
Categories: ethics & philosophy, gender & feminism, medicine, social justice
Pinktober is upon us 
Hoyden About Town 
I bet his take on this would change were he to suffer any of these conditions he talks about. Nothing like a little bit of experience to change your perspective on life.
I bet he’s also one of those people who regards things like gluten intolerance and coeliac disease as things women make up to inconvenience men.
Oh, I’m with you on the white-hot. Definitely boiling over. I’ve been avoiding the link all week, even though it’s been all over the place (as far as CFIDS circles go), because I knew how furious I’d be if I read it.
Although the comments aren’t half bad – I particularly liked the “this article violates your own terms of use, by being likely to provoke, attack or offend others.” The title alone did that for me. Then there was the one that showed how he was working for insurance companies (surprise, surprise).
I just can’t decide if I’m angrier that other doctors will read this (and believe it) or that the general public could read this (and believe it). Either way: tearing out hair.
I’ll be over here sputtering incoherently.
Seriously, RAGE.
Sorry to take you off-topic, but I’m missing my Whoydensday! Did I miss it or has it been overlooked this week?
One of the things that annoys me so much about this kind of nonsense is that it reduces the willingness of researchers to look for real causes and solutions. This leaves a big opening for quacks to move in, and then out goes the baby with the bathwater.
Anyway. I’m not as knowledgeable about fibromyalgia as I should be, so I hope my question isn’t rude.
I’d read a few years ago that one theory about the way fibromyalgia progresses is that pain nerves become hyperstimulated or self-stimulated, or the part of the brain that detects the pain nerves becomes hyperreceptive or self-activating, and that there was some progress in treating it using this theory with some meds used in treating depression.
Then this became “it’s all in your head” even though that’s at best a horrible oversimplification of the problem.
Was that theory ever any good? Does it still hold any promise?
I know several people with FM and none of them seem to be enjoying their illness one little bit. I really hope someone can come up with something for them soon.
Words won’t come today so:
Epic Fail
This has me shaking and crying. It’s doctors like this guy that will cause me to sit and suffer and not seek their help, even when the pain and fatigue are unbearable.
oldfeminist, that was one course of treatment that one of my doctors started when I was in the US military. They said that anti-depressants had been shown to help w/ pain (and never really explained how even when I asked), and put me on huge doses that made me a zombie. Then, the rest of the team of doctors saw that I was on ADs, and decided that I had a mental illness, and shuffled me off to Mental Health, and every time I went back to them, they would tell me, “you need to see your Mental Health Provider”, b/c they didn’t treat mental health patients. So, the AD treatment blocked any other treatment for me, and I had big ol’ “Mental Illness” stamped in my military record, even though I had only shown mild depression (of course I did! I was in so much pain all the time!). I was eventually discharged w/ a medical board for, you guessed it, depression, even though I had been diagnosed w/ fibro.
Articles like this give me no hope that anyone will ever take me, or anyone else w/ these illnesses, seriously.
OuyangDan’s last blog post..What she fucking said…
“And sometimes people fall into the hands of charlatans who give them bogus explanations.”
Yup, like Wessely.
And FFS, when is the “blame teh interwebs” thing gunna get old? Last I looked, I could tell a pile of crap on my computer screen just as easily as I can tell one in real life. I don’t need to be protected from teh nasty interwebs by Wessely, or anyone esle. I’d be very suprised to see this trotted out as an excuse for a “male” disease. CFS/ME/Fibro etc is classified as female and therefore subject to hysteria. *eye roll* Teh menz get real illnesses and know when teh interwebs is lying to them. Us chicky-babes just get fooled and become hysterical.
Honestly, this is about as useful as the ancient Roman concepts of hysteria, which was treated by wafting herbs up the vagina to lure down the wandering uterus. Wellesly can waft his herbs somewhere else. My internet bullshit detector is going off.
Oh. My. Fucking. Gods.
Yes, also depression cause physical symtoms but it’s “all in your head” as well.
“These psychologisers are believed, because they are the people who are reinforcing existing prejudice.”
This articulates the whole issue for me. It never, ever, ever ends. I always hear the same platitudes from people, which result from common misconceptions. These misconceptions continue in the broader community because the people uttering them already believed this bullshit in the first place. This just gives them the excuse to say it aloud and pretend it’s not hideously offensive.
madeinmelbourne’s last blog post..The women I love
“internet-triggered “faulty illness beliefs”. Really?
So how would the “learned doctor” explain the fact that I’e been suffering from fibromyalgia or what appear to be similar or related symptoms since well before the internet was invented then?
To “A” in moderation: we don’t publish comments with non-working email addresses.
Fibro, CFS, and IBS are all the same disease, eh? Couldn’t possibly be that they share a high rate of comorbidity, possibly due to being triggered by a similar underlying pathology?
I have all three, and I’ve become a “professional patient” in large part because I’ve had to deal with genius like this from so many other doctors. I have one physician currently who’s researching whether these conditions all stem from vagus nerve impingement (TMJ is a common comorbidity with all three, too), and Dr. Yunus at the U of Illinois is onto a neurochemical underlying cause for all three. Both of which are showing actual, observable, measurable, repeatable support in testing – unlike the “it’s your brain demons!” theory.
But hey – why do the science when you can rely on anecdata and patient-blaming?
There are lots of self-diagnoses of Asperger’s Syndrome, but that doesn’t seem to invalidate it. Oh wait – it’s a male condition.
I wondered how ‘neurasthenia’ made the transition from a precursor to M.E. to PTSD or ‘shell shock’. Then I realised it was a deliberate decision to ‘feminise’ and stigmatise the soldiers who suffered from it. Victorian society pathologised those who stood up to it or posed a threat – Indians, the Irish, the working class – and of course as madness was female, they were portrayed as inadequate and less than masculine. Wessley and his ilk are deliberately referencing the bias that is still in psychiatry. (Asperger’s = male brain. M.E. = female nervous delusion.)
I want to write an article about this issue – it’s extremely interesting.
Claire’s last blog post..Dinny Lacey, Tipperary officer
Sorry for the bad formating. M.E. brain. 🙂
[sorted – tt]
So not funny, but this part made me snicker:
“In Germany they believe low blood pressure is bad.”
Ha! So in other countries they don’t? LOL! Ironically I was constantly told that low BP must be causing my fatigue and dizziness before I was finally diagnosed with fibromyalgia! @_@ (And after the blood pressure check, they said it was all in my head because my BP was either normal or high.)
I’m glad the strange coincidence saved me from exploding with rage.
I think what some of these psychiatrists forget is that your brain is an integral part of your body… its not some empty space filled with supernatural experience, it’s a physical entity just like the heart, an arm or your nose. If any of these body parts can cause illness why cant the brain cause physical illness too? Perhaps there is a neurological reasoning behind the likes of CFS and fybromyalgia but that doesnt mean the treatment or cause is purely psychological and that only psychological (or the pdoc special, pull your socks up ) treatments will work.
I do think there is a large part of CFS relating to misfiring in the brain but i dont think positive thinking and forcefeeding antidepressants will fix it. Then again im not a medical practitioner, only someone who lives daily with the conditions and what do i know? Its not like i can read the same books they do is it? That would never do – oh no cant have educated ill people! Totally unacceptable. Im off to bed to contemplate my existence now 😉
Any Kiwis out there remember “Tapanui Flu” in the early ’80s. Post-viral syndrome I think they may have called it, but was effectively CFS. Another attempt to dismiss it as mass hysteria in the media at the time.
I was at university with a woman who was diagnosed with CFS at the same time. Funnily enough pre -internet.
Consistent theme, don’t understand it with current medicine = doesn’t exist/all in the mind.
Yes, that one’s especially clueless (if there can be such a thing in an interview like this). Orthostatic Intolerance/POTS is a very well known issue, likely (IMO) to be a subtype of CFS-as-we-know-it in Australia, UK, and America. And any parent of a Wiggles-loving child will know about it.
Some doctors have no clue, do they? Just because an illness can’t be diagnosed with a quick easy test doesn’t mean it’s not real.
I take one small exception with this: 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.
because of the way the medical system treats overweight people, and blames their weight for every condition. http://fathealth.wordpress.com/
Yes, I remember Tapanui flu, and a friend who suffered from it. Nothing quite like having a handy little label to stick on someone, and tell them it’s all their fault.
Another major issue I have with this is the basic assumption that if it has a psychological component, it isn’t a real illness. (I’m not supporting any of his conclusions, please don’t assume I think any of these things is significantly, or even slightly caused by psychological issues.)
I currently have a range of vague symptoms, being looked into by the medical profession. Psychological causes are on the list for me (although so far not for my doctors). If psychology is causing my illness, it is STILL AN ILLNESS. I still need to be treated. It STILL ISN’T MY FAULT. If I had total control over my psychology, it wouldn’t be causing an illness. This seems like such a no-brainer to me.
Even if one of his quoted diseases turned out to be entirely caused by psychology (yeah right), it wouldn’t make it any less medically valid.
This mentality is born out of fear and prejudice of mental illness and psychological distress. The line between medicine and psychology is arbitrary and damaging.
Just to illustrate what I mean, this is fantasy, but stress causes fatigue in everyone. If some pathway that processes the chemicals produced under stress gets damaged and ends up in a runaway feedback loop that causes CFS, is that a psychological or medical cause? Who cares? Find the root cause and FIX IT. Failing that, treat the symptoms as best you can. There is nothing to be gained in the distinction. Just treat the problem in an evidence based way.
And if my illness turns out to be caused by something very much on the psychology side of the line, I expect my doctor to support me in finding treatment for that cause (as I know she will) and not dismiss it as “all in my head”. My head is generally rather influential, dismissing it seems cowardly.
Ariane’s last blog post..Out of date musings
Hi Hoydens,
I want to add Epilepsy and LS (Lichen Sclerosis ) to the list of conditions that get the it’s all in the mind/set, or ‘ just nerves’ ‘treatment’. I’ve had Epilepsy since 13 years of age and the best some Drs can explain is that it’s something idiopathic, possibly even attention seeking sickness?
That’s easy to cope with compared to LS, its full name is Lichen Sclerosis et Atrophicus in women, and Balanitis Xerotica Obliterans in men. LS BXO for short, is an illness where there are definitely nomenclature problems, faulty beliefs, psychological issues, and scratchy knowledge involved. Everyone agrees LS is rare, little known of and pre-cancerous, but that is where agreement ends and the questions start.
It is not sexually transmitted. Both men and women get it. LS in women is apparently often confused with chronic thrush infection. LS has similar symptoms to Lupus, CFS etc. in fatigue and pain and numerous skin conditions, and clusters of other ‘autoimmune’ conditions.
As well, it is often misdiagnosed because it is seen by the medical profession as the disease that older women get. (vulval and possibly also vaginal dryness, fusing and atrophy cramps and spasms) So, pre-menopausal women and girls are not on Drs. radar and so they can suffer very badly from medical ignorance of the significant occurrence in the non-menopausal demographic. (see necessary biopsy, labiaplasty, perineoplasty, cancer treatment etc..)
(Especially little one’s with redness, touching themselves issues or even urinary issues – where misdiagnosis is in the form of – you got it – suspected sexual abuse, so it all round becomes horrific for the parents as well) Anyway…
By the time I was finally diagnosed I was totally BESIDE MYSELF… and had of course never heard of it, but neither had my GP so that made two of us. He doesn’t look at the web so negatively and often tells me to go home and look something up on the web and we discuss it later, I have used the internet to assist better communication with my GP, but I see all sorts of great cost saving measures relating to health promotions for the future.
Three years ago now – I’d been up half the night for weeks with swollen itchy vulva – with Mr. Yours snoring away in bed and me unable to sleep with the net for company. (after I began saying No or avoiding saying No a lot) And frantically googling vaginal itch, and getting very little useful information, excepting thrush information and the odd come-on to scratch my itch over there… Until…
After finally using the correct search term (doh) vulva, I stumbled upon pics. on the web and thinking that’s it, that’s what I’ve got and I went to the GP and sure enough he did a biopsy and it was Lichen Sclerosis. I think it is a good idea for girls and women to adopt the use of the term vulva in order to get good info and avoid smut.
Things have improved significantly since the diagnosis but I have become wedded to the internet support group that is pledged to find a cure. The internet filter threatens groups such as the one I help so I’m looking to join the campaign to stop the introduction of the Conroy plan.
I have since contacted the Boston Women’s Health Collective who publishes Our Bodies Our Selves (as while searching for an answer I read my edition cover to cover and found no references to chronic itch or LS) and asked that they include information in future editions. Which I am pleased to say has been done but alas needed correction as they placed it only within the menopausal paradigm.
I can see why people like Wessely want to denigrate the value of the information out there and how people like him are mounting a last ditch effort to hold onto their professional money, power and prestige. But the net can be used to make Drs and patients more accountable and give health awareness messages that can save health dollars and lives. It brings many forms of health information to doable web projects available anywhere there is a reasonable grasp of English. (For want of translators)
If you haven’t already come across it check out a site called wholewoman, it’s run by a woman called Christine Ann Kent who is definitely challenging the psychiatro/patriarchal complex operating in medical spheres.
Christine Ann Kent has a very active site (wholewoman forum) that is dedicated to helping ‘prolapse’ sufferers develop muscular control to alleviate some of the truly horrifying symptoms.
There are some commercial aspects to it (she sells vulval balm) but she is a self-supported women’s health advocate and researcher, and appears to be an ethical seller. Anyway she has the nod from Dr Christiane Northrup so she is solid in her theories and the commercial aspects are worth overlooking imv. Christine has developed a woman centred yoga and support community that has a lot to recommend it.
Apologies if this was OTish, over the paragraph limit for comments and tad ranty…
If itch persists see your Doctor.
The personal is after all political.
all the best
Ariadne – very true. There is a psychological/stress component in many serious illnesses, including cancer and heart disease.
“I’d read about people with Gulf war syndrome in newspapers. They looked incredibly like my CFS patients except they were in uniform.”
Hmph. Gulf War Syndrome is a neurotoxic illness caused by multiple chemical exposures. Teams of researchers have done actual science to figure this out.
And he feels confident making a diagnosis based on photographs?
Yes, the leading theory of fibromyalgia’s mechanism right now is central sensitization. The body is hypersensitive to pain signals in particular, but any sensory signal in general (which is why you also see chemical sensitivities, why nonpainful stimulus like a light touch is interpreted as pain, and so forth). This does not mean that fibromyalgia is therefore “all in your head.” I’m sorry to be rude but this is just plain stupidity: to assume that something is occurring in the brain means it must simply be imagined. What one thinks and what one physically feels are two separate functions of the brain — this is second grade education, is it not?
Now, things are complicated because many of the neurochemicals and other functions of the nervous system affect both one’s thoughts and one’s physical sensations at the same time. Serotonin is an example: it’s your brain’s “bouncer,” blocking out the “bad” signals. Low serotonin is common in depression. Fibromyalgia patients also show low levels of serotonin. Sharing one symptom does not one syndrome make. Just because two conditions share one particular manifestation does not mean they are therefore the same thing, that there is no such thing as Cond’n Two, it’s “actually just” Cond’n One. Again, I apologize, but this is stupidity. A broken leg and a broken arm both hurt. Does that mean that when you break your arm, someone would be right to say “No, there’s no such thing as a broken arm — you’ve actually broken your leg” and proceed to cast your leg and ignore your arm?
Yes, antidepressants were the main treatment line for fibromyalgia, back when there were no good treatments for fibromyalgia pain. Leveling your serotonin level was the best we could do for a long time. But because serotonin level is only one component of fibromyalgia that didn’t really have much effect. The new generations of pain medications — Lyrica, Cymbalta — treat fibromyalgia differently, and much more effectively. Lyrica is actually an antiepileptic; are there any who would seriously claim this means fibromyalgia must “actually” be epilepsy?
I apologize to the commenter who raised these questions; sie may have simply been asking for clarification so that sie is armed with knowledge when faced with an asshole like the dr. in the OP.
But this is a subject which gets all of us fired up — it’s hard to respond calmly and evenly when your very life is being attacked, denied. When something so very important and influential is dismissed as nothing. If you had children, imagine someone trying to claim there’s no such thing as children and you don’t really have children at all; you’re just imagining them to comfort yourself. People aren’t going to respond calmly and evenly to that sort of affront. Of course, people also will feel fully comfortable dismissing such a claim, and the claimer, as completely ridiculous. Because such views do not hold power in our society and in our health care system.
Unfortunately, such views about CFS, fibro and MI do hold great power in those places. So we can’t just let go as “ridiculous” these claims. They aren’t just some random person going about being an idiot. They are an entire industry which is still hostile to us at its heart. There are a growing number of professionals who Understand(TM), who are up on the research. But they are not the norm, yet.
See? I didn’t read closely enough. My apologies to oldfeminist; you didn’t need to get yelled at. It’s just that people *do* make those assertions and I got riled up. lol.
How lucky did I get? My GP has a young daughter who has CFS and so he is better researched and more Understanding than most. In fact, he’s very open to new knowledge especially about the use of supplements – sadly there is nothing I can report to get rid of the constant spasms, aches and pains but at least I feel a bit clearer and able to pace things and be somewhat more able to accomplish something before the next bout of hitting the wall sets in.
(Interested persons may wish to google Indol 3 Carbinol (I3C) and or Diindolyl Methane (DIM), Folinic Acid, use of Magnesium; and Progesterone troche)
amandaw said ‘back when there were no good pain treatments available ‘ I’d be grateful to learn of any effective pain relief as I could do with some.
Egghhh I have no words…. errr it feels real to me, dude. CFS and depression can have very similar symptoms, but very often the difference is that the person with CFS is completely frustrated by their limitations and constantly eager to go out and make the most of life. I’m really glad that the Australian Government recognises it now with giving disability pensions to suffers, I know someone who had it in the nineties who had a horrible time on the dole trying to avoid being given work or kicked off payments.
I’m interested to know more about culturally specific illnesses with regards to CFS – I take his agenda-laden version with a huge lump of salt though.
Louise: I’m not quite clear on what you’re taking exception to? That’s intended to be a list of things that PWCFS have had their symptoms falsely attributed to. One of those things is fat; when a fat person presents with symptoms, bad doctors try to attribute everything to the fat. I think we’re in hearty agreement that that’s an uninformed and reprehensible approach to medicine.
ARGH.
i totally agree with “calyx”
”CFS and depression can have very similar symptoms, but very often the difference is that the person with CFS is completely frustrated by their limitations and constantly eager to go out and make the most of life.”
before I was diagnose with M.E/CFS i was seeing the doctors and worrying my parents because they thought i was suffering from depression, the reason i was really upset and everything so much was because of the CFS, i had people constantly telling me there was nothing wrong with me, even my own sister said i was just “attention seeking” as if i wanted to be as ill as i was which is totally ridiculous, i couldn’t see my friends much at all, i used to be really very sporty, sport was the main part of my life and i couldn’t do it any more. Of course this is going to be totally frustrating and saddening.
”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”
Whilst my CFS was undiagnosed i would have been willing to look at any explanation for my illness, the idiot that said that is the one needing to look at a “broader consideration” open mindedly, in my opinion.
@Informally Yours: fwiw, taking a potassium supplement along with my calcium-magnesium supplement keeps my muscle spasms fairly well controlled. I don’t assume this will necessarily help anyone else, just throwing it out there. The potassium works so well for me that if I miss a day or two, I can barely walk from the spasms in my feet and calf muscles, but if I take it every day, the spasm attacks only come a few times a year.
@mods: I apologize for commenting to an old post like this, I got here via a blogaround from Shakesville and I failed to check the thread date.