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

[TiredSam]

PS. I know my ME isn't group hysteria as I'd never known anyone with ME or the symptoms prior to getting it myself

That's a very good point. How many of us had ever heard of ME or knew anything about it until months after we had it? As far as I know I'm the only guy in the village with PEM, and it took me 9 months after onset to make the connection between exertion and delayed tiredness.

 

[TiredSam]

Please excuse my waffle, I'm foggy as thick seamist

It seriously took a while of wondering why a woman who sews would be foggy before I worked out what you meant

 

[Mrs Sowester]

It seriously took a while of wondering why a woman who sews would be foggy before I worked out what you meant

Is waffling a kind of sewing? I'd imagine it to be like smocking...

 

[TiredSam]

Perhaps if there were such a person as "Rachel", and she were able to identify herself, she would have legitimate cause for making a formal complaint to the GMC. Perhaps she would even have a justifiable case for compensation against author and publisher. Perhaps what is needed is a campaign for Rachel to make herself known to someone guaranteeing greater confidentiality.

Of course, Rachel might be entirely fictitious.

She'll probably come out with some waffle about Rachel being an amalgamation of patients she has known for the purposes of illustration. Rachel is all in her head. Thick as a seamstress, that woman.

 

[TiredSam]

Is waffling a kind of sewing? I'd imagine it to be like smocking...

I saw "seamist" and thought "seamstress" - and wondered why you would call one thick and foggy.

I gave up smocking years ago, I was on 20 a day.

 

[chipmunk1]

She'll probably come out with some waffle about Rachel being an amalgamation of patients she has known for the purposes of illustration. Rachel is all in her head. Thick as a seamstress, that woman.

Not only this. Even when some of her patients existed it is possible that she is not reporting objectively.

She must have had more than a handful of cases. Where are the failures? According to some of the studies that she cites misdiagnosis still happens in 5% of cases. She must have had cases like that. We don't hear about them.

 

[Chrisb]

I saw "seamist" and thought "seamstress" - and wondered why you would call one thick and foggy.

I gave up smocking years ago, I was on 20 a day.

I hope you were on piece rate.

 

[Mrs Sowester]

That's a very good point. How many of us had ever heard of ME or knew anything about it until months after we had it? As far as I know I'm the only guy in the village with PEM, and it took me 9 months after onset to make the connection between exertion and delayed tiredness.

An OT made me make the connection between my activity and PEM by keeping a diary about 4years in to my moderate ME phase. It showed that my headaches, swollen lymph nodes and the like were caused by my activities 2 days prior. Until that point I didn't believe my diagnosis was correct.

Re. sea mist; the sea is about a mile away from me and some days I can watch the mist roll down the lane towards my home. Sometimes it approaches at a fast walking pace and tumbles forwards low to the ground like smoke. The fields, fences and sheep all disappear into it until it reaches my yard. Sometimes it is so thick I can't see my husband's workshop 20metres away. It is really quite magical, like someone has cast a spell!
But this waffle and whimsy is off topic, aaargh!

I think my point is that it doesn't follow logically that so many people who have never met are manifesting a psychosomatic illness with the same symptoms. And it must be possible to prove this mathematically.

 

[Hilary]

What strikes me is not just that doctors who turn "no disease detected" into "no disease" are irrational, but how incredibly arrogant they are

 

[alex3619]

Group hysteria must have a pattern of spread that has been studied.

So far as I am aware the evidence does not show group hysteria is a real thing. Its a label applied to things they do not understand. ME has been called group hysteria, which dates back to a PhD in 1970 in which no patient was even talked to.

Group hysteria is an unproven hypothetical category. I think its far more likely to represent a failure in diagnosis, for one of a large number of reasons, rather than a clinical entity.

 

[worldbackwards]

Haven't read one of these for a bit, but I'm intrigued now…

https://twitter.com/i/web/status/725692045830934529

 

[JaimeS]

Why is it that so many doctors automatically conflate "no detected disease" with "no disease exists"? How can they be so irrational? The history of medicine is full of examples where this is proven to be a false claim - just because a disease process exists does not mean that its easy to detect, especially if the technology to detect it is not even developed yet, or not widely available.

The "if I can't find it with the most commonly used diagnostic testing, it's imaginary" is something we all face as PWME; at least one GP will say this to all of us before we find a neuro, endo, or immuno person who knows which tests to actually run that detect abnormalities.

There's an inherent belief in the physician's infallibility, to make such a claim: "If I can't find it (easily!), it does not exist. My powers of perception are simply that profound." The arrogance in such a position is mind-boggling to me.

I can't imagine being that certain of my knowledge in ANY arena.

-J

 

[Mrs Sowester]

I just did a Google Scholar search of Mass Hysteria and have learnt that women, black people, poor people, children from broken homes and who have lost a parent in childhood are all liable to flaky hysteria.
So that leaves rich white men as the only reliable people sane enough not to imagine being ill.
Whoop! Go science of the 70s and 80s!

But seriously, is there nothing scientific out there at all that supports the psychosomatic theory of group hysteria? Not even a study of how a yawn spreads (although I guess that's more about empathy and mirror neurons rather than hysteria?)
I've just accepted that it must exist in some cases because I was told so much about it. I genuinely feel like a woken up sheeple right now.

 

[worldbackwards]

And the guest novelist is… Nasim.

https://jcoynester.wordpress.com/20...ns-its-all-in-your-head-with-an-introduction/

Which is all very well and no offence but I know exactly what she thinks without having to read it.

 

[TiredSam]

And the guest novelist is… Nasim.

https://jcoynester.wordpress.com/20...ns-its-all-in-your-head-with-an-introduction/

Which is all very well and no offence but I know exactly what she thinks without having to read it.

I know what you mean, but it's worth a read anyway, I'm half way through and enjoying it ...

EDIT: first bit is by Coyne and has some interesting historical background

 

[Luther Blissett]

From the article

There’s a woman who is apparently blind but draws her a perfect thank-you card. Or one whose hand is paralysed into a claw but when a treatment is given relaxes it within minutes, rather than the days the treatment usually takes.

From 2003 Reith Lectures; The Emerging Mind, V S Ramachandran (Lecture 2)

Let me now tell you now about an extraordinary neurological syndrome called Blindsight discovered by Larry Weiscrantz and Alan Cowey at Oxford. It's been known for more than a century that if the visual cortex which is part of the new visual pathway, if that's damaged you become blind. For example if the right visual cortex is damaged you're completely blind on the left side if you look straight everything to the left side of your nose, you're completely blind to.

When examining a patient named GY who had this type of visual deficit, one half of the visual field completely missing, where he was blind, Weizcrantz noticed something really strange. He showed the patient a little spot of light in the Blind region. Weiscrantz asked him "what do you see"? The patient said "nothing" and that's what you would expect given that he was blind but now he told the patient "I know you can't see it but please reach out and touch it" The patient said well that's very strange - he must have thought this is a very eccentric request. I mean, point to this thing which he can't see.

So the patient said, you know I can't, I can't see it how can I point to it? Weiscrantz said well just try anyway, take a guess. The patient then reaches out to touch the object and imagine the researcher's surprise when the patient reaches out and points to it accurately, points to the dot that he cannot consciously perceive. After hundreds of trials it became obvious that he could point accurately on 99% of trials even though he claimed on each trial that he was just guessing. He said he didn't know if he was getting it right or not. From his point of view it might as well have been an experiment on ESP. The staggering implication of this is that the patient was accurately able to point to an object that he denied being able to see. How is this possible? How do you explain his ability to infer the location of an invisible object and point to it accurately?

The answer is obvious. As I said GY has damage to his visual cortex - the new pathway - which is why he is blind. But remember he still has the other old pathway, the other pathway going through his brain stem and superior colliculus as a back-up. So even though the message from the eyes and optic nerves doesn't reach the visual cortex, given that the visual cortex is damaged, they take the parallel route to the superior colliculus which allows him to locate the object in space and the message then gets relayed to higher brain centres in the parietal lobes that guide the hand movement accurately to point to the invisible object! It's as if even though GY the person, the human being is oblivious to what's going on, there's another unconscious zombie trapped in him who can guide the hand movement with uncanny accuracy.

This explanation suggests that only the new pathway is conscious - events in the old pathway, going though the colliculus and guiding the hand movement can occur without you the person being conscious of it!

I know which explanation has more explanatory power, and a proposed physical mechanism to accompany it.

As for the paralyzed hand, why not damage to the Cortical homunculus, with a similar explanation for phantom limb pain that is relieved by a mirror box?

http://www.bbc.co.uk/radio4/reith2003/lectures.shtml

Edited for spelling

 

[Luther Blissett]

And Esref Armagan, who was born without eyes, can paint, but most importantly, can paint perspective, and scale.

(The important sciencey part from 5:30)

 

[Hilary]

Was anyone else overcome by an attack of hysterics (I'm going for the double diagnosis) on reading the description in the book of - presumably - the one and only Prof Weasly ?.... "one of the foremost experts in CFS.... responsible for the largest number of scientific studies..... devised the most effective treatment programme...... [and] is the person in the UK who has taken this illness the most seriously and ...has devoted much of his career to solving the riddle" - this would be hilarious if it wasn't so ludicrous

 

[Hilary]

Brilliant response by the Countess of Mar to this atrocious book - here's the link http://www.meassociation.org.uk/2015/06/its-all-in-your-head-psychosomatic-book-storm-countess-of-mar-challenges-author-to-change-her-mind-about-mecfs/

 

[Richie]

It's back to Micky Sharpe's "undeserving sick" rubbish.I.e.
"I am caring. You really are ill. Let me help you. You don't deserve to be dismissed by some doctors who claim you are malingering, or exploited by other doctors giving you "false" physical diagnoses and false hope, what you need is the emollient word, the wise "artistic" doctor with an understanding of the mind, and your mind in particular, who will lead you through the labyrinth of denial, false belief, negativity etc to the sunny uplands of good health - oh and, btw, just bear in mind - if you don't listen to us, and seek physical treatment then you really do deserve to be ill"

Does OS claim that failure to diagnose physical illness rarely happens? Is that Julia Newton's experience? In any case as far as ME/CFS goes there is a special consideration. False illness belief doctrine insists that we should not be tested as it will confirm us in the conviction that we are in fact physically ill, and thus justify our maladaptive behaviour, so we are not likely to get sufficient testing on doctrinal grounds. This may not be the case for e.g. pseudo epilepsy, where testing may be thorough, but it is for us.

Just wondering if pseudo seizures might be serotonin related. A background of psychological stress might compromise serotonergic function but in another way than in depression. Disturbed serotonergic systems esp excess serotonin or (theoretically) sensitive receptors can produce twitching. Benefit might be had from psychotherapy just as psychotherapy can produce benefit in serotonin associated depression. Not necessarily any great mystery or imagination here, perhaps.

Also wonder if psychological problems can activate some pathways in pseudoseizures which are deactivated by therapy. Perhaps more mysterious but analogous in some way to blind vision.

OS seems to know a few things about pseudo-seizures, but what does she really know about ME/CFS?