United Kingdom: Dr Suzanne O’Sullivan (BPS neurologist)

Ah i see what you mean @Sid yes perhaps you're right. just so used to hearing them say we're attention seeking i read that into it. But what i said about the fear/avoidance still stands.

I do resent the 'take to their beds' trope in any case - people rarely go to bed if they arent forced to.
 
I think we all know how the real attention / fear / avoidance cycle works in ME:

Look at me! I’m the doctor with all the answers!
Oh no… my patient doesn’t seem to be getting better. What if I’m wrong after all?
I’ll just ignore all the science being done, blame the patients for being unwell, and say I alone have the answers!
(Repeat.)

Fortunately there is a cure: GET (Graded Epistemology Therapy) and CBT (Challenging Bogus Therapy). Sadly even when those who benefit the most from these treatments are willing to seek help, they may still suffer outbursts of conviction that they alone can cure a serious illness through faith healing. But with time, they can learn not to be professionally or ethically debilitated by these experiences.
 
JemPD said:
Ah i see what you mean @Sid yes perhaps you're right. just so used to hearing them say we're attention seeking i read that into it. But what i said about the fear/avoidance still stands.

I do resent the 'take to their beds' trope in any case - people rarely go to bed if they arent forced to.
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Yep it’s plain bigotry- anyone saying it needs some self-analysis as if they don’t mean to be a bigot they need to ask why they are being one
 
DigitalDrifter said:
Merged thread: The reality of imaginary illness


I replied on YouTube with:
@10:48 "resistance to the diagnosis is about the stigma". This is a strawman argument against ME patients who suffer worsening of symptoms (in some cases permanently) from exercise or exertion. Under a psychological model worsening of symptoms are not believed by doctors, friends, family, and employers. As a result patients are treated unfairly, are given the wrong advice, and in some cases have their disability made permanently worse. There have even been cases of patients being forcibly sent to mental institutions and children with ME being taken away from their parents. Suzanne O'Sullivan dedicated a chapter in her book (It's All in Your Head: True Stories of Imaginary Illness) to ME which she claims is psychosomatic.
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Omg I think she actually believes that she is ‘the enlightened one’ but then (probably because as she says she didn’t know what medicine was, so I assume science too, then ‘learned by tote’ before hitting some ‘moment she thinks when she met patients) she seems to confuse empathy (an important skillset which is about insight, and arguably necessary/a driver of good scientific discovery, which some just seem unable to attain, not the 'pretending to be nice' those who can't do it like to pretend it is) and proper scientific psychology (which would analyse the nonsense methods of psychosomatic and call them out where it is due) with misogyny/disability bigotry and rhetoric to pretend it isn't just propaganda. By pretend psychologising sticking nasty little made up or misinterpreted or twisted (versions of what I assume she has been privileged to have someone tell or show her about their life) stories on people. Which is a breach of trust, not 'help'.

Is doing that latter bit - looking how you can use them - worse than saying ‘not this objective thing’ (as she asserts as straw man false justification)? Yes, when you do things that lead to epistemic injustice, removing the voice and existence of a person by talking instead of them and when your work focus on stuff that limits access to the most productive and likely forms of research and help
 
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At 5:43: "The neurological system is unbelievably amenable to measurement. So you can't objectively measure pain but you can however objectively measure consciousness. [...] Even when she was convulsing and profoundly unconscious, her brainwaves showed a normal waking pattern that we would expect to see in someone who is awake and well. There's only one way that you can be both unconscious and have a waking brainwave pattern and that is if the unconsciousness is psychologically driven rather than being due to a brain disease."

A statement falsified by the existence of complete locked-in syndrome (CLIS) and its EEG findings. See Varieties of the locked-in syndrome (1979, Journal of Neurology)

During the discussion of conversion disorder, I do agree with her statement at 7:10: "There's an awful lot that's hidden between wooly, changeable terms."
 
The poor lady seems very confused. How could unconsciousness be psychologically driven if the mind is turned off (unconscious). She doesn't mean unconscious. I suspect she doesn't really know what she means. (Sorry to be so controversial.;))
 
New book by Suzanne O'Sullivan. She's expanding her range. :grumpy:


'The Age of Diagnosis: Sickness, Health and why medicine has gone too far' by Suzanne O'Sullivan (Hardback)

'From autism to allergies, ADHD to long Covid, more people are being labelled with medical conditions than ever before. But can a diagnosis do us more harm than good? The boundaries between sickness & health are being redrawn.

Mental health categories are shifting all the time, radically altering what we consider to be 'normal'. Genetic tests can now detect pathologies decades before people experience symptoms, & sometimes before they're even born. Increased health screening draws more & more people into believing they are unwell.

An accurate diagnosis can bring greater understanding & of course improved treatment. But many diagnoses aren't as definitive as we think. In some cases they risk turning healthy people into patients. Drawing on the stories of real people, as well as decades of clinical practice & the latest medical research, Dr Suzanne O'Sullivan overturns long held assumptions & reframes how we think about health.'

https://coles-books.co.uk/the-age-of-diagnosis-by-suzanne-o-sullivan-hardback



Gawd, it's reviewers (see amazon) are calling it 'Brave' and 'Compassionate'. Sounds like they've just recycled reviews of Showalter's Hystories from 1997. Taking pot shots at sick people sells so well.


.
 
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other new categories like Long Covid are driven by patients themselves.

When we are suffering, it feels natural to seek a diagnosis. We want a clear label, understanding, and, of course, treatment. But is diagnosis an unqualified good thing? Could it sometimes even make us worseinstead of better?
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Yes. My illness which has literally left me bedridden and unable to speak would be better if I just ignored my diagnosis. Thanks Suzanne.

Goodreads Link to give the book a rating if wanted.
 
I have a real question about professionals using stories about individuals that are often pretty identifiable and might well not be strictly accurate in the sense that would be said individual’s description they’d agree with (at least).

When reporting figures or doing research there is always a minimum number for any subgroup when reporting - normally 5. So eg in a staff survey if a dept was small or only had a few females you wouldn’t report the score for ‘how satisfied were you with…’ because they are identifiable

It’s even worse if the facts have been embroidered and made more public .

I haven’t read this but I’ve read past ones along these lines and noted the big difference between them and eg the Oliver Sacks style where the patient insight was very much respected and part of it vs objectified (I think that’s the right term where you aren’t taking their insight or word on their life as a serious starting point?).

This isn’t like talking about someone’s cardiology history and no one around them would know they were the person who had a stent but it was something else technical that worked instead. Or something to do with blood or cells most laypersons wouldn’t notice the difference in treatment someone had. And can all be technically annotated and checked . With limited info on the rest of who they are but it tending to be accurate and relevant (like them being keen to return to their boxing career)

having read the thread on the Declaration of Helsinki update recently I’m now even more intrigued about the ethics covering these types of things
 
bobbler said:
I have a real question about professionals using stories about individuals that are often pretty identifiable and might well not be strictly accurate in the sense that would be said individual’s description they’d agree with (at least).

When reporting figures or doing research there is always a minimum number for any subgroup when reporting - normally 5. So eg in a staff survey if a dept was small or only had a few females you wouldn’t report the score for ‘how satisfied were you with…’ because they are identifiable

It’s even worse if the facts have been embroidered and made more public.

I haven’t read this but I’ve read past ones along these lines and noted the big difference between them and eg the Oliver Sacks style where the patient insight was very much respected and part of it vs objectified (I think that’s the right term where you aren’t taking their insight or word on their life as a serious starting point?).

This isn’t like talking about someone’s cardiology history and no one around them would know they were the person who had a stent but it was something else technical that worked instead. Or something to do with blood or cells most laypersons wouldn’t notice the difference in treatment someone had. And can all be technically annotated and checked . With limited info on the rest of who they are but it tending to be accurate and relevant (like them being keen to return to their boxing career)

having read the thread on the Declaration of Helsinki update recently I’m now even more intrigued about the ethics covering these types of things
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You’re absolutely right @bobbler. A patient usually can’t choose their physician psychiatrist, psychologist based upon foreknowledge of how safe ethical trustworthy or in fact prejudiced unscrupulous and exploitative they might prove to be as with this author.

I would like to see some negative consequences for the healthcare practitioner turned author like this one. The ones who use the suffering of their patients as material. Then not only profit off of the suffering of their patients, but also violate their trust and privacy, exposing their bodies and minds to public view, all whilst explicitly directing the audience to view the patient in their most painful vulnerable moments with the harshest gaze. Encouraging and compounding the prejudices against their whole personhood and those like them too.

I don’t know what the process for consent to use of a patients confidential medical materials are. Maybe there isn’t even one. If there is, I do not think that with the power imbalance there it can really be said to hold up.

Additionally for this author her content amounts to abuse and no one can freely consent to an authority figure manipulating public perceptions against them.
 
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bobbler said:
I have a real question about professionals using stories about individuals that are often pretty identifiable and might well not be strictly accurate in the sense that would be said individual’s description they’d agree with (at least).
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I think the way people like O'Sullivan get around the issue of patient confidentiality is that they 'fictionalise' their examples. I think they usually say that their examples are amalgams of real patients. Which is all very well, in terms of concealing patient identities, but it also means that these medical authors can just 'make stuff up'.

There's no accountability or way to check, it's just their word against, well, no one really. Because when authors like O'Sullivan get interviewed, there's never anyone asking skeptical questions. They are the experts and their anecdotes are so often lauded as fascinating insights.
 
Hutan said:
I think the way people like O'Sullivan get around the issue of patient confidentiality is that they 'fictionalise' their examples. I think they usually say that their examples are amalgams of real patients. Which is all very well, in terms of concealing patient identities, but it also means that these medical authors can just 'make stuff up'.

There's no accountability or way to check, it's just their word against, well, no one really. Because when authors like O'Sullivan get interviewed, there's never anyone asking skeptical questions. They are the experts and their anecdotes are so often lauded as fascinating insights.
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No one.
 
From the Sunday Independent on March 9:

https://www.independent.ie/life/hea...struggles-as-medical-problems/a622135327.html

Without paywall:
https://archive.is/KJJYS#selection-4119.0-4527.137

Home / Life / Health & Wellbeing / Health Features

Neurologist Dr Suzanne O’Sullivan: ‘We are a perfectionist society, we explain away differences or struggles as medical problems’
‘Diagnosis creep’ is pushing people towards ‘illness identities’
--
"Overdiagnosis is the subject of O’Sullivan’s new book, which takes an urgent yet empathic look at Huntingdon’s disease, Lyme disease, long Covid, autism, the cancer gene, ADHD, depression, neurodiversity and something called Swan (syndrome with no name), and how the change in culture around these conditions can impact individuals through overdiagnosis."
[..]
"Labels matter. She explains how psychosomatic illnesses, in which she includes long Covid, are not all in the mind. They may originate in the mind, but their physical symptoms are manifestly real."
--

“I’m meeting people like Darcie every week,” O’Sullivan says, adding how people with psychosomatic illnesses “represent about a third of people attending specialty clinics – cardiology, respiratory, dermatology, neurology, gynaecology. That’s how common it is, yet people don’t seem to understand how serious a problem it can be.
 
Dolphin said:
From the Sunday Independent on March 9:

https://www.independent.ie/life/hea...struggles-as-medical-problems/a622135327.html

Without paywall:
https://archive.is/KJJYS#selection-4119.0-4527.137

Home / Life / Health & Wellbeing / Health Features

Neurologist Dr Suzanne O’Sullivan: ‘We are a perfectionist society, we explain away differences or struggles as medical problems’
‘Diagnosis creep’ is pushing people towards ‘illness identities’
--
"Overdiagnosis is the subject of O’Sullivan’s new book, which takes an urgent yet empathic look at Huntingdon’s disease, Lyme disease, long Covid, autism, the cancer gene, ADHD, depression, neurodiversity and something called Swan (syndrome with no name), and how the change in culture around these conditions can impact individuals through overdiagnosis."
[..]
"Labels matter. She explains how psychosomatic illnesses, in which she includes long Covid, are not all in the mind. They may originate in the mind, but their physical symptoms are manifestly real."
--

“I’m meeting people like Darcie every week,” O’Sullivan says, adding how people with psychosomatic illnesses “represent about a third of people attending specialty clinics – cardiology, respiratory, dermatology, neurology, gynaecology. That’s how common it is, yet people don’t seem to understand how serious a problem it can be.
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How is she meeting with people with this every week if she is a storytelling writer?

and who is attending all these clinics? How would she know what a gynaecology clinic gets re patients? Who is she to speak on such patients having their issues being psychosomatic?

all this, putting aside the moral position of deciding to do what we’ve discussed above in order to make money and consent and confidentiality etc, makes me ask is she stepping into talking on things for which she really has no qualification to speak on vs man on street?

I mean it’s an interesting insight into the baggage of ‘personal opinions, bias and belief systems’ of some / someone that aren’t just allowed to lurk in certain jobs but to the extent they are allowed to publish them publicly and the employer is ok with that (you would in many jobs have to be very careful of giving your opinions and ideologies on even social media as it reflects on the organisation etc)

but it isn’t like she is any kind of expert in all these specialties so how is it claimed as expertise?
 
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Irish Independent:
https://www.independent.ie/entertai...-the-dangers-of-overdiagnosis/a586398049.html
https://archive.is/spXmx

‘ADHD is a business as well as a medical disorder’: Irish doctor on the dangers of overdiagnosis

Dr Suzanne O’Sullivan examines the rise in recorded cases of autism, ADHD and long Covid, and how labels can bring new problems

People with symptoms of long Covid at a US Congressional hearing in 2023. Dr O'Sullivan thinks the condition is "problematic". Photo: Drew Angerer/Getty Images
[..]
It’s all part of the quest to find a “biological cause of human distress”, O’Sullivan says, acknowledging that the pathologising of mental health problems and behavioural disorders is a trend right now, both within medicine and society. “Diagnosis is subjective, a true art,” she writes, “and that makes it susceptible to mistakes, exploitation and social pressure.”

A glaring example is that of long Covid, a diagnosis that has been driven by the patient community. Efforts to explain long Covid as a consequence of viral pathology have all fallen short and the non-specific nature of its long list of associated symptoms clouds the picture even further. It is clear O’Sullivan thinks the condition is “problematic”, pointing out that one support group included “loneliness”, “feeling scared” and “skin ageing” on its symptoms list.

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Dr Suzanne O’Sullivan: ‘We need to be more thoughtful before accepting labels that could lower our expectations for ourselves’
The evidence that a significant proportion of long Covid is psychosomatic in cause has built slowly, writes the expert in psychosomatic disorders. Here, she is saying the quiet part out loud, and one gets the sense she would be far more forthright with a more select audience.
 
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