What is the last paragraph? It's behind the paywall for me as well. And if that's what Tom is saying, it's likely the person who wrote the subhead also didn't get that.
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The Times: "The Sleeping Beauties by Suzanne O’Sullivan review — how the human mind can make us sick" by Tom Whipple, 2021
- Thread starter Jonathan Edwards
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What is the last paragraph? It's behind the paywall for me as well. And if that's what Tom is saying, it's likely the person who wrote the subhead also didn't get that.
Based on what I read in, I think it was a New Yorker article on Resignation syndrome, it seems that very few cases, with a specific group of doctors speaking to the media. In many ways it was inconsistent with psychogenic illness but very consistent with creating a narrative. It wasn't clear there was nuance in defining the patients so that some of them couldn't have had ME due trauma, or some who malingered, or some who were confused and just agreed with their doctors.
After all, once you create the group, the labels, it's fairly easy to put people in it. E.g if an American child were about to get deported and got a flu and had PVFS, that would never be labelled resignation syndrome, but in Sweden, under specific doctors it would. And all it takes from that point is a little bit of narrative and you have an illness when you really haven't accounted for what's going on. Defining an illness based on suggestion seems like defining a psychogenic illness, but more vague, allowing for any and all inputs and outcomes that fit, but not the labels that don't fit.
Admittedly, I have never been to Sweden, met the kids and so on. I also have never met or heard locally about groups of kids exhibiting consistent illness behavior. I would be willing to bet that some of the grisi siknis might say, you know what that behavior was just something I was putting on for cultural purposes.
https://www.s4me.info/threads/the-new-yorker-the-trauma-of-facing-deportation.3603/#post-64087
After all, once you create the group, the labels, it's fairly easy to put people in it. E.g if an American child were about to get deported and got a flu and had PVFS, that would never be labelled resignation syndrome, but in Sweden, under specific doctors it would. And all it takes from that point is a little bit of narrative and you have an illness when you really haven't accounted for what's going on. Defining an illness based on suggestion seems like defining a psychogenic illness, but more vague, allowing for any and all inputs and outcomes that fit, but not the labels that don't fit.
Admittedly, I have never been to Sweden, met the kids and so on. I also have never met or heard locally about groups of kids exhibiting consistent illness behavior. I would be willing to bet that some of the grisi siknis might say, you know what that behavior was just something I was putting on for cultural purposes.
https://www.s4me.info/threads/the-new-yorker-the-trauma-of-facing-deportation.3603/#post-64087
Jonathan Edwards
Senior Member (Voting Rights)
The Wikipedia entry leaves out a lot of the political background. From what I have read it was extremely convenient for the US administration to find an argument for withdrawing from the embassy. We are familiar with governments setting up committees that come to comfortable conclusions - as for Gulf War Syndrome.
Medically the story of ultrasound or microwaves does not make any real sense. If these modalities caused strange illnesses then that would have been picked up in industrial contexts either in the days when there was no regulation or in countries where it is still poor. I don't know of any such evidence.
Jonathan Edwards
Senior Member (Voting Rights)
The final column:
'Although she writes with compassion, O'Sullivan's book will anger many, not least, I suspect, its subjects. Almost all of those she visits reject the idea that their disease is psychosomatic.In all cases there are competing explanations, albeit some that involve demons. There are many, too, who are chronically sickk in Britain today who will see in her writing veiled accusations towards their conditions - implications that they too are, in some sense, suffering from diseases created by their minds.
What is most profoundly unsettling about O'Sullivan's book, though, is the realisation of just how sick your mind can make you. The brain can create and maintain a real, crippling illness from which it is unable to extricate itself. And there are few good answers for curing it.
Modern medicine can treat the brain and it can treat the body. But when the act of treating is part of the feedback loop that causes the pathology, when it provides the validation, refutation, the theatre of illness, what do you do? What is diagnosing spreads the contagion? What if reading books does?
Doctors have tried their best but resignation syndrome has only one known cure: a successful asylum application. Grisi siknis too has been treated with epilepsy drugs and benzodiazepines to no avail. The only intervention with proven results is a shaman, a ritualistic process with all the symbolic power in its own context of gaining Swedish nationality in another.
It is a measure of how effective O'Sullivan is at describing the dilemmas and difficulties of treating psychosomatic conditions that, by the end, a visit to a witch doctor begins to feel like the most sensible medical intervention in the book.'
I think Whipple makes some fair points but does not seem to appreciate (a) just how muddled and wrong some of O'Sullivan's interpretations may be or (b) the key issue that within each syndrome there may be cases with completely different dynamics. (E.g. for Havana syndrome the first case actually had something wrong with their ears, maybe for resignation syndrome some cases have depressive psychosis and some were malingering by proxy for their parents.)
I guess he expresses the key concern, but not quite loud enough, that this book is going to sell and gets a slot in a major newspaper because it is essentially voyeurism from within the medical profession and a particularly nasty sort of hypocritical voyeurism that pretends to be caring but may in fact be pathogenic.
Hoopoe
Senior Member (Voting Rights)
A voyeurism that is excited by psychosomatic cases and doesn't really want to know whether they actually are psychosomatic cases or not.
It bothers me too that Whipple describes the book as 'a superb study', when from the article it sounds to me more like a modern version of a freak show.
I think people writing books for the 'popular science' genre aimed at entertaining the general public, and making shedloads of money for the author, have a huge responsibility to get things right when they involve medical issues, and not to exaggerate for effect.
I haven't read the book, but if the level of ignorance about ME in her previous book is anything to go by, I doubt the depth of her understanding of the cases she visited. In some of these examples described from the current book, she is visiting sick individuals living in a very different culture to her own, which adds to the feeling that what she is doing is very superficial.
I think people writing books for the 'popular science' genre aimed at entertaining the general public, and making shedloads of money for the author, have a huge responsibility to get things right when they involve medical issues, and not to exaggerate for effect.
I haven't read the book, but if the level of ignorance about ME in her previous book is anything to go by, I doubt the depth of her understanding of the cases she visited. In some of these examples described from the current book, she is visiting sick individuals living in a very different culture to her own, which adds to the feeling that what she is doing is very superficial.
This jumps out "by the end, a visit to a witch doctor begins to feel like the most sensible medical intervention in the book". If that's the most these folks can offer, then maybe they should just give up on the "medicine" and move into writing full time - fiction that is.
I read a bit about the Swedish asylum seeker cases a while ago. If I remember rightly, Swedish psychologists had set up a centre where these girls could go and be gently nurtured and cared for by kind nurses and psychologists and with support and guidance they would gradually heal. So psychological treatments seemed to help.
I generally feel that its certainly possible that the brain could make you sick. Technically it is possible that any illness is 'psychosomatic' to some degree, we just don't know. Given the huge lack of knowledge in this area, the only possible reason to label a particular illness 'psychosomatic' is if psychological treatments work to cure the illness. If psychological treatments work with the Swedish girls, I guess it's useful to label the illness psychosomatic (although obviously still important to question if social factors, power relations, Dr's opinions etc. are in fact the cause as people have mentioned here).
With ME, psychological and behavioural treatments don't work for the majority of patients. Therefore, it's not useful to label it psychosomatic.
When I speak about ME with non-ME ppl, I don't want to appear to dismiss the possibility of my illness being psychosomatic outright - it is possible, just as it is possible with any illness. But I have tried psychological treatments and they didn't work. So I reject the BPS model not because I don't want to have a psychosomatic illness, but because the psychological treatments don't work. If it turns out tomorrow that my illness is psychosomatic and there's a psychological treatment that works, I'll be thrilled. But in the mean time, we should treat ME like any other illness for which psychological treatments don't provide a cure such as cancer, ME, heart disease etc.
I think this is a helpful way to explain our situation to people who read articles like the ones about the Swedish girls and are fascinated by the mind-body connection and so very ready to put ME in this category. For these people, it makes sense when an eminent psychiatrist says that the only reason pwME reject psychological treatments is that we don't want to be seen to be mentally ill and don't understand the mind-body connection. I want them to know that we reject his treatments because they don't work, not because we are theoretically opposed to them. I think this distinction is important.
I generally feel that its certainly possible that the brain could make you sick. Technically it is possible that any illness is 'psychosomatic' to some degree, we just don't know. Given the huge lack of knowledge in this area, the only possible reason to label a particular illness 'psychosomatic' is if psychological treatments work to cure the illness. If psychological treatments work with the Swedish girls, I guess it's useful to label the illness psychosomatic (although obviously still important to question if social factors, power relations, Dr's opinions etc. are in fact the cause as people have mentioned here).
With ME, psychological and behavioural treatments don't work for the majority of patients. Therefore, it's not useful to label it psychosomatic.
When I speak about ME with non-ME ppl, I don't want to appear to dismiss the possibility of my illness being psychosomatic outright - it is possible, just as it is possible with any illness. But I have tried psychological treatments and they didn't work. So I reject the BPS model not because I don't want to have a psychosomatic illness, but because the psychological treatments don't work. If it turns out tomorrow that my illness is psychosomatic and there's a psychological treatment that works, I'll be thrilled. But in the mean time, we should treat ME like any other illness for which psychological treatments don't provide a cure such as cancer, ME, heart disease etc.
I think this is a helpful way to explain our situation to people who read articles like the ones about the Swedish girls and are fascinated by the mind-body connection and so very ready to put ME in this category. For these people, it makes sense when an eminent psychiatrist says that the only reason pwME reject psychological treatments is that we don't want to be seen to be mentally ill and don't understand the mind-body connection. I want them to know that we reject his treatments because they don't work, not because we are theoretically opposed to them. I think this distinction is important.
ME/CFS Skeptic
Senior Member (Voting Rights)
What do you mean with the reference to Gulf War Syndrome? I thought Wessely'study was persuasive that something might have happened in the Gulf War that caused the symptoms of GWS.
Jonathan Edwards
Senior Member (Voting Rights)
On the Andrew Marr programme on the radio O'Sullivan was compared to Oliver Sacks. However, my memory of Sacks's books was that he presented the strange world of neurology with genuine sympathy and no claim to explain with psychologising. The man who mistook his wife for a hat must have been considered by all readers as 'there, but for the grace of God, go I'. O'Sullivan seems to be doing something very different and distasteful.
Jonathan Edwards
Senior Member (Voting Rights)
I don't remember what Wessely's exact conclusion was. I thought he had pretty much dismissed any specific cause - or used some sort of bio and psycho waffle to explain it away. Whatever he said the government managed to do nothing and bury it.
Edit: In his article 'Ten Years On' he concludes:
We speculate that the story of Gulf War ill health began with the experiences of veterans reporting symptoms. These may have been triggered as an unexpected reaction to measures taken to protect the armed forces against modern warfare, reinforced by the social and psychological pressures and changes that war brings to all it touches. These narratives were taken up by powerful media, and shaped into a particular syn- drome under the influence of popular views of health, disease and illness. Further impetus came from the actions, or inactions, of government, and only recently by the activities of doctors and scientists. How the story will end remains to be seen.
To me that is classic comfortable BPS waffle that seems to take everything in to account but between the lines says 'nothing much to see here' you can move on and forget it'.
Edit: In his article 'Ten Years On' he concludes:
We speculate that the story of Gulf War ill health began with the experiences of veterans reporting symptoms. These may have been triggered as an unexpected reaction to measures taken to protect the armed forces against modern warfare, reinforced by the social and psychological pressures and changes that war brings to all it touches. These narratives were taken up by powerful media, and shaped into a particular syn- drome under the influence of popular views of health, disease and illness. Further impetus came from the actions, or inactions, of government, and only recently by the activities of doctors and scientists. How the story will end remains to be seen.
To me that is classic comfortable BPS waffle that seems to take everything in to account but between the lines says 'nothing much to see here' you can move on and forget it'.
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I think that there is an additional problem its not just the presentation of symptoms to the medical practitioner it is how that practitioner interprets symptoms in terms of what they have seen before or heard about. So there are two layers here that allow for translation errors between the actual symptoms and the recording of them.
ME/CFS Skeptic
Senior Member (Voting Rights)
I thought this study of Wessely' was interesting, indicating that something might have happened during the Gulf War. Even though Wessely himself prefers to give a BPS explanation focused on anxiety, the data look interesting. Health of UK servicemen who served in Persian Gulf War - The Lancet
I might have misinterpreted your point then about the Gulf War Syndrome, thought you were arguing there was nothing to see there.
Mithriel
Senior Member (Voting Rights)
I have never seen any evidence that the mind can make you sick. There is no plausible explanation ever offered for how it could work at the cellular level. When you look at FND it is impossible to find that base.
For CFS, they offer the explanation that you become deconditioned after an infection, possible, then when you being to exercise you feel bad and think it means you are still ill, possible as well. It is a genuine theory in that it is testable. It turns out to be just plain wrong because many people with ME are not decondition and do plenty of exercise so are not afraid of it.
Psychosomatic illnesses by contrast keep evoking the power of the mind without ever explaining what that power is or by what process the brain can create and maintain a real, crippling illness. How and why can the brain stop impulses being decoded as they pass from the eye to our consciousness? At what point does the brain block a signal along the nerve to move an arm. Why does it happen? Why can the conscious mind not overrule it? Invoking the "subconscious" is not an answer.
Maybe such things are possible but they are so unlikely and so against our experience that the evidence must be extraordinary and compelling yet too often it is exceptionally weak.
Before ME was renamed CFS it was not considered a disease which had fatigue as its main symptom but as a part of it as you get with infections, MS liver disease etc. Afterwards I found that people were describing fatigue as their most important symptom. I realised that many of them were calling what they had fatigue even though it had never occurred to me to explain them as fatigue.
I would find it easier to go down a list of things and tick off what I get than describe from scratch, that way I can see what I don't get. Let's face it PEM and brain fog are batted around all over the place these last few months but I am not convinced they are describing what I get as part pf my ME.
Jonathan Edwards
Senior Member (Voting Rights)
In fact I realised that it might seem paradoxical. In both cases the report was politically convenient. But what was convenient was very different on the two occasions!
This is right. he did not resort to any psychologizing that I can remember and took all the manifestations he wrote about as genuine neurological phenomena. Although he was also once criticized in a famous smack-down as "the man who mistook his patients for a literary career," which I thought was a funny but unfair characterization.
My memory is that he only thought a small percentage of cases was attributable to actual toxic exposures but most were BPS-izing. But I could be wrong.
Jonathan Edwards
Senior Member (Voting Rights)
I don't think it is quite as simple as that. But I certainly think that talking of the mind making you sick is unhelpful.
The mind can make people seem sick. The most obvious example is malingering, which is obviously a real phenomenon.
The brain can make people sick - with hallucinations or fits.
The question is what would it mean for the mind rather than the brain to make you sick. The simple answer is that a competent medical scientist does not talk of minds causing things or 'spiritual causes' in the way that O'Sullivan does. It seems to have become popular in psychoneurology to talk of mind and brain interacting but in neuroscience nobody would think that meant anything. It is a pastiche of Descartes that not even Descartes fell for.
But if it is going to mean anything to say that mind causes illness then by mind we must mean processes that involve being aware of input and also of the way thoughts develop from that input. In other words it excludes the sort of murky unconscious processes that Freud believed in. Thos are brain rather than mind precisely because they are unconscious.
The situation is complex because all the processes that include awareness and are mind involve outputs being generated from inputs in a way that itself is unconscious. We may be aware that we would prefer the fish rather than the chicken but we are completely unconscious of the process that leads to feeling that way. But for mind to make you ill we really have to say that being aware that we want to have a pain generates a pain - which of course is nonsense as far as we know. Maybe some people can do that but nobody ever admits to doing that so why should we think they do?
The basic problem is that people like O'Sullivan seem to believe in some supernatural 'mind thing' that can cause pains without itself knowing it can cause pains or cause fits without itself knowing it can. I would say that whatever causes non-epileptic fits by definition cannot be a mind thing precisely because it is not aware of the causing. It has to be considered as a brain process and only as a brain process.
Snow Leopard
Senior Member (Voting Rights)
I've never seen anyone phrase it quite like that. But I wonder if there are still a few people who claim just that (or the equivalent with a different symptom)? (but even if they claim it, that doesn't mean it is true)
Jonathan Edwards
Senior Member (Voting Rights)
This I would actually disagree with since it is the area of neuroscience I work on. We have very plausible mechanisms for brains producing pains or fits or fatigue or whatever you like.
All the things we are aware of are patterns of symbols that the brain constructs using inferences based on sensory inputs. When I see that my black lacquered piano is all the same colour it is because my brain calculates that all the complicated patterns of colours on the piano are reflections from furniture and curtains and flower vases and airbrushes them out unless I deliberate look at the light pattern.
Brains create dreams. Something that can create an extended complicated story with moving pictures and other sensations that are not there can create pretty much whatever you like. And since all these colours and sensations like touch and smell are all symbols the brain invents to talk to itself there is nothing surprising or implausible about any of it. The deep puzzle is how electrical patterns in nerve dendrites are 'felt' as everything from the red of a tomato to the concept of GDP. But Descartes understood the nature of that puzzle and also the fact that it is only surprising because we instinctively believe that red is out in the world rather than inside our head. If I live long enough I might manage to get a handle on how the connection does actually work. I have made significant progress this year but need help from other younger minds.
I would agree that the ideas put about by the FND crowd are crassly incompetent - all the stuff about predictive coding is hot air. But there is nothing implausible here. If you have lived with and looked after someone who has 'lost their mind' for a year you come to understand just how much the brain is a fantasy machine that can very easily go wrong. As Prospero said: we are such stuff as dreams are made on.