"Suzanne O'Sullivan's It's All in Your Head wins Wellcome Book Prize 2016"

[actup]

http://changeformechangeforus.co.uk/power-of-stigma

A moving visual response by a young woman with me/cfs to the "It's All in Your Head" theme.

 

[JaimeS]

The whole article is tongue-in-cheek;

When health is tied to happiness, it takes on an almost spiritual, moral quality: This is the way you should live, to be happy. And you should value happiness, not only for its own sake, but because it is equivalent to healthiness. Mitchell, for one, characterized his writings about neurasthenia as “lay sermons.”

Sound familiar? The author is discussing the way that being healthy is viewed as being righteous. We've certainly discussed that kind of thinking here.

“We’ve basically divided neurasthenia up into a lot of different diagnoses—anxiety disorders, depression, OCD, eating disorders, or even something like chronic fatigue syndrome,” Stiles says. “Because the diagnosis is so broad, you can really see it in numerous aspects of American life now. What’s different is we seem to have made the diagnoses more specialized.”

This just seems to mean that if we lived back then, we would all have been diagnosed with neurasthenia, rather than that CFS IS neurasthenia, or necessarily anything like it. Though I don't really like CFS's company in that sentence!

 

[Esther12]

http://www.theatlantic.com/health/a...appiness-and-culture/473253/#article-comments

According to this article CFS is one of several manifestations of neurasthenia. Written by a senior associate editor, Julie Beck, at the atlantic.com. Is Julie Beck a buddy of Simon Wesley as well. Not in the Atlantic- No.....

I'm so intensely uninterested in neurasthenia. When I think of how little we know about CFS now, the idea of people in a hundred years time looking back to write the history of the illness seems absurd. Yet the quality of research into neurasthenia was massively worse. Almost nothing about it can be claimed with confidence, so instead we get pieces written in which weak evidence is filtered through the prejudices of patients, doctors, researchers, historians (and often then historians yet again) to the point where it's just noise.

edit: Just seen @JaimeS said the same...
I didn't think this article was that bad on linking it to CFS though:

“We’ve basically divided neurasthenia up into a lot of different diagnoses—anxiety disorders, depression, OCD, eating disorders, or even something like chronic fatigue syndrome,” Stiles says. “Because the diagnosis is so broad, you can really see it in numerous aspects of American life now. What’s different is we seem to have made the diagnoses more specialized.”

It's likely that some symptoms which would have been diagnosed with neurasthenia would now be diagnosed as CFS.

 

[Aurator]

a buddy of Simon Wesley as well. Not in the Atlantic- No.....

Just for the record, the name is Wessely, not Wesley.
Certain well-known Wesleys actually did some good in the world.

 

[BurnA]

Marrying her clinical experience with patient case studies, O’Sullivan attempts to highlight an area of medicine that is often subject to stigma. “Psychosomatic disorders are really, really common, but for some reason people don’t talk about it. Psychosomatic illness is rarely dangerous – people don’t usually die from them – but they can still destroy people’s lives, or steal their lives in other ways,” said O’Sullivan. Winning the prize “is a mark of respect for the patients I’m looking after”.

It’s All in Your Head, which is just out in paperback, will be reviewed here next month by Brian Dillon, author of Tormented Hope: Nine Hypochondriac Lives.

http://www.irishtimes.com/culture/books/suzanne-o-sullivan-wins-30-000-wellcome-book-prize-1.2629410



I don't have a good feeling about this

The Hypochondriacs is a book about fear and hope, illness and imagination, despair and creativity. It explores, in the stories of nine individuals, the relationship between mind and body as it is mediated by the experience, or simply the terror, of being ill. And, in an intimate investigation of those lives, it shows how the mind can make a prison of the body by distorting our sense of ourselves as physical beings.

 

[Aurator]

I don't have a good feeling about this

The Hypochondriacs is a book about fear and hope, illness and imagination, despair and creativity. It explores, in the stories of nine individuals, the relationship between mind and body as it is mediated by the experience, or simply the terror, of being ill. And, in an intimate investigation of those lives, it shows how the mind can make a prison of the body by distorting our sense of ourselves as physical beings.

It looks to be no more than the musings of an art critic on a theme that he happened to be "researching" and decided there was enough public interest in to generate reasonable sales of any book he might write on it. From what I can judge of it from the preview, it's intellectual candy floss - so not that different from O'Sullivan's own little work of pseudo-science, which, incidentally, it's almost certain she'll be writing a sequel to as we speak.

 

[Jeckylberry]

why don't WE write a book full of tenderness and heartache and at times funny but thought provoking?

 

[Valentijn]

why don't WE write a book full of tenderness and heartache and at times funny but thought provoking?

A collection of short stories and/or anecdotal experiences as ME patients? Available free for download in .pdf or ebook formatting?

It seems like a project that could be accomplished, though would need editing, selecting of the most appropriate stories, etc.

 

[Jeckylberry]

We could get a forward by eminent doctor and maybe even a couple of short stories by physicians about what they experience as someone who actually treats it like its a serious illness. And high profile! In bookshops next to the quacks!

 

[AndyPR]

why don't WE write a book full of tenderness and heartache and at times funny but thought provoking?

Not quite the same but there is the Humans of ME/CFS project here http://homecfs.solvecfs.org/submit.html

The Solve ME/CFS Initiative has launched a campaign to help increase awareness of —and ultimately research funding for—Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. The campaign, “Humans of ME/CFS” is a takeoff of the popular “Humans of New York” [URL='http://www.humansofnewyork.com/about']photoblog

and Facebook page.

The aim of the campaign is to show the faces and stories of those suffering from ME/CFS so that those who are in charge of allocating research funds cannot deny the widespread devastation this disease has inflicted on so many for so long. - See more at: http://homecfs.solvecfs.org/submit.html

[/URL]

 

[Jeckylberry]

Great! Sounds good. Really like to meet them measure for measure. We also have things to say about the mind and medicine.

 

[u&iraok]

Yes, exactly, and they have finally discovered that my life-long dream when getting my masters degree, writing my thesis, having a 16 year successful career, getting married, raising my daughter, having an active social life, exercising at the gym, walking my dog that I raised for ten years, etc... was to secretly have it all taken away from me due to severe, alarmingly worsening dyspnea and lung weakness b/c I secretly wanted to become 100% wheelchair bound and stay home alone while my family participated in life. I secretly wanted to pay for caregivers to help me shower and secretly wanted to be gasping for air with chest pain. And somehow they discovered my secret plan to develop a mast cell disease and be hospitalized for anaphylaxis. How did they figure it out?!!! This definitely deserves a top book prize. When the doctor cannot figure out the exact mechanism behind the symptoms this equals psychosomatic. Brilliant work. Well done. Is it still psychosomatic after the autopsy is done?

Oh, there's always at the ready such statements like, "deep down you were scared of success" "you wanted to got back to the womb where it was safe" "deep down you want to be taken care of" so your subconscious told you to be sick so that you wouldn't have to face the world.

I talked to a woman once who had a difficult mother who ended up not being able to walk and was in a wheelchair for decades. Her mother drove her crazy, ordering her around and getting 24 hour attention. Then her mother developed Alzheimer's and began walking around, no problem. Well, she had been faking all those years to get attention!

I also have a friend whose ex-wife pretended to be wheelchair bound until her children saw her in Walmart walking around.

These are the stories that people point to and assume we are somewhere there...oh dear, having a mid-after noon-been reading too much here-Fredd protocol crash. Can't think how to end the sentence. You get the idea...(must be my subconscious feeling guilty for me writing about it's little games and so made me crash )

 

[JaimeS]

A collection of short stories and/or anecdotal experiences as ME patients? Available free for download in .pdf or ebook formatting?

It seems like a project that could be accomplished, though would need editing, selecting of the most appropriate stories, etc.

I would be really happy to gather and edit such stories...

 

[BurnA]

A collection of short stories and/or anecdotal experiences as ME patients? Available free for download in .pdf or ebook formatting?

Nobody will read it if it's free !

Wouldn't it be nice if it had the tag line :

True stories of ME sufferers....inspired by Rachel.

 

[Jeckylberry]

I would be really happy to gather and edit such stories...

Let's start a new thread on this!

 

[ronddejambe]

Hello, I'm new to the thread, but I've been browsing the forum for ages.

I am really interested in psycho-somatic illness. It fascinates me and I'd really like to know if there has ever been any peer-reviewed research which suggests it's real. I don't mean 'minor' things like stress headaches and IBS but the pseudo-epileptic seizures, contractures and paralysis that get written about. They've always seemed so strange, I guess I just assumed they were genuinely psycho-somatic and thought nothing more than how strange the brain can be. I know a survivor of incest (who was horrifically assaulted over about 15 years) and in the community of rape-survivors, it seems to be taken as read that psycho-somatic illness exists because of people experiencing things like dissociative states and severe pelvic pain. Again, that contributed to me assuming it existed.
I have EDS and it took 13 years to get a diagnosis. No- one ever mentioned the words 'conversion disorder' or 'hysteria' but it was very much implied, repeatedly by different doctors. I was treated as if I had it. Then, oops, oh no, it turned out I did have something wrong with me. I had prolotherapy and it was (first time round anyway) a miracle. Funny how appropriate treatment helps. It did wear off and subsequent rounds did nothing, but then I got M.E and the fun began all over again.

In hospital before my diagnosis I met at least 1 patient with "conversion disorder." He'd become paralysed at a football match. He had no feeling in his legs but nothing showed up on his scans. The nurses were horrible to him, incidentally; he was treated very much as a fraud although he was 15 years old and couldn't walk.

I do wonder how, if it truly exists, there are such abysmal cure rates. Surely once a patient is told there is categorically nothing wrong with them and they have a listening ear and appropriate therapy, they *should* get better.

I saw Coyne say on his twitter that Sullivan hasn't published any peer-reviewed research. But M.E aside, I really want to look into things like pseudo-epileptic seizures more. I have been reading about Reflex Anoxic Seizures and it strikes me that lots of people who suffer with those might be mis-diagnosed initially with having a psycho-somatic condition. Has anyone ever read *anything* which supports the existence of psycho-somatic epileptic seizures? Or any of the other more strange symptoms? I've always rather assumed that even if it does exist then it's ultimately no threat to M.E patients. Don't get me wrong, I know massive harm is being done at present because we are dismissed as not being truly ill, and that extends to how much funding our illness has had, etc but ultimately the tide is turning and we do have an ever-growing body of evidence which supports the fact that we are suffering from a somatic illness. It won't be possible to ignore that forever.

 

[BurnA]

Surely once a patient is told there is categorically nothing wrong with them and they have a listening ear and appropriate therapy, they *should* get better.

This is the line that i have trouble with.

Is this said on the assumption there is nothing wrong with the patient ?
But clearly there must be something wrong with the patient otherwise they wouldn't be in that position, unless they were faking it. If they were faking it then a listening ear probably won't have any effect.
And what is appropriate therapy in this case ?

Disclaimer : I don't know anything about psycho-somatic illnesses

PS Welcome!

 

[ronddejambe]

Thank you!

I guess I mean that if it's true that a patient has suffered a terrible trauma and their body converts their emotional distress into a seizure, let's say, and then they have good quality therapy from a trained psychologist - surely that should be enough to reduce their symptoms. And yet everything I've read suggests that most "psycho-somatic illnesses" are intractable and very rarely cured. So does this point to a flaw in the theory full stop, or is it a sound theory but the body converting emotional distress into a physical symptom is just a process that is very hard to reverse and always will be.

Essentially, if people suffer psycho-somatic therapy, if it exists, why doesn't therapy help more?

 

[JaimeS]

Has anyone ever read *anything* which supports the existence of psycho-somatic epileptic seizures? Or any of the other more strange symptoms?

By definition, no such evidence can exist.

Psychosomatia is assumed when the physician cannot *find* any evidence of illness. However, as has often been said, "the absence of evidence is not the evidence of absence." In logical terms, it is impossible to prove that something does NOT exist.

Go ahead, try and prove that there is NOT an invisible unicorn behind your left shoulder. PROVE it isn't there. Try it!

Now try to prove that there IS an invisible pink unicorn. Suddenly, burden of proof is very tangible, no pun intended!

This is sometimes referred to in logical fallacies as the Argument to Ignorance, or the Appeal to Ignorance: because I am ignorant / unaware of evidence that X exists, I am certain X does not exist.

The ridiculousness of the premise that patients can choose to produce symptoms because of a desire to do so is explored (pretty hysterically) here.

What you discuss, being diagnosed with a psychosomatic condition, only to discover evidence of illness or dysfunction later (oops!) is horrifyingly common and is the universal experience of anyone with an illness that does not show up in CBC blood testing. Later on, with specialized testing, patients receive the 'whoops lol sorry' conversation from their medical care providers.

-J

 

[A.B.]

Thank you!

I guess I mean that if it's true that a patient has suffered a terrible trauma and their body converts their emotional distress into a seizure, let's say, and then they have good quality therapy from a trained psychologist - surely that should be enough to reduce their symptoms. And yet everything I've read suggests that most "psycho-somatic illnesses" are intractable and very rarely cured. So does this point to a flaw in the theory full stop, or is it a sound theory but the body converting emotional distress into a physical symptom is just a process that is very hard to reverse and always will be.

Essentially, if people suffer psycho-somatic therapy, if it exists, why doesn't therapy help more?

I think that the concept of psychosomatic illness is probably the result of misinterpretations, bad science, and in some cases outright fraud. It's a simple and wrong answer to a variety of complex problems.

For example, there is an association of autoimmune illness flaring up and psychological stress. Among the illness once considered psychosomatic and latern proven to be physical there are many autoimmune illnesses. The idea that emotions are converted into illness precede the discovery of autoimmune illnesses, so doctors probably interpreted this correlation as evidence of such a conversion process. Correlation is not causation but we tend to jump to conclusions based on mere correlations.

I do think it's possible that abuse of various types may end up causing physical problems later in life. However the idea of repressed emotional distress manifesting as illness doesn't make a lot of sense. It was based on 19th century ideas on how the nervous system functions (short version: stimuli that go in must come out in some form). I haven't looked into this in depth, but it's important to know that a lot of false evidence is generated through retrospective studies which combined with referal patterns can easily result in a false association of childhood abuse and later physical problems. I'm not saying this is the case, but it must be kept in mind that bad science can easily generate misleading results. If the association is confirmed, epigenetic changes that affect development and maturation of the body seem a more plausible explanation to me. Another possibility is that the association is for reasons other than causality. It seems plausible that people in poor health could be more attractive targets for an abuser, much like bullies like to pick on those who are perceived as weak. Another possibility is that tendency to inflict abuse runs in families together with a tendency to develop certain health problems.

A lot of these ideas are based on Freud who was later exposed as having fabricated case stories of treatment success. Yet this hardly seems to bother anyone.

Some food for thought.