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

[Evergreen]

Transcription (in the section below) of a podcast(?) where she talks about Huntington’s disease. Line breaks added.

Huntington’s disease (HD) is often described as a combination of Alzheimer’s, Parkinson’s and ALS. It has a diagnosed prevalence of <0.01 %.

I’ve been close to 5 people with HD, and it’s misleading to say that it usually starts with psychiatric and behavioural changes. Every patient will present differently, and the physical symptoms can be just as prevalent, if not more. This especially goes for symptoms that are difficult to mask like involuntary eye movements.

To me, HD serves as a reminder of how society and the people in it view being sick. Only 10-20 % choose to take the genetic test, and the patients are never encouraged one way or another. The lack of testing means that it’s a lot more difficult to provide adequate help because most patients are unable to recognise how sick they are (it’s a part of the neurodegenerative aspect).

But as soon as they have a treatment, everyone will be encouraged to test as early as possible. So the issue isn’t knowing that you’re sick, it’s knowing that you’re sick and can’t do anything about it.

So in my opinion, HD is an example of potential harmfull under-diagnosis. It makes my blood boil that she’s using this cruel disease to further her own agenda about over-diagnosis.

—————

What's happening with Huntington's disease?

[01:01:28]
I just think this is a really powerful story to teach us about how your experience of your body is altered, about beliefs about your health. So Huntington's disease is a degenerative condition. It's very Very unpleasant. It usually Begins in someone's 30s or 40s with psychiatric symptoms and behavioral changes. It's a neurodegenerative condition.

So you get frontal lobe symptoms, like impulse control, and then you start getting involuntary movements. They're called choreophor movements, like funny, writhing movements. And then ultimately you lose control of your speech and over your swallow. So you have both a psychiatric decline and you have a physical decline.

It's an inherited condition. And they discovered the gene for Huntington's in 1994, I think it was. If your parent has a Huntington's disease gene, then you have a 50, 50 chance of getting it.

I think this is a fascinating concept because there are people walking around knowing that they have a 50, 50 chance of getting this disease and knowing that there is a test that they can get that will tell them whether they have it or they don't have it. And of all those people who could have that test, only about 10 or 20% of people actually have the test.

[01:02:39]
Oh, interesting.

[01:02:40]
They have this opportunity to know this enormous part of their health future, and they don't take it up. I spoke to a lady called Valentina. Her mother was adopted, so didn't know this was in the family.
Valentina was 28 and pregnant when she discovered her mom had Huntington's disease. So the minute she discovered that, she knew she had a 50, 50 chance of getting it, and she knew that her unborn child had a 25% chance of getting it, obviously it was dead. She had siblings who had children.

The family were very anxious, and their first impulse was to think they would be tested. They met genetic counselors, and then it was pointed out to them that the minute you test, your whole life changes if it's positive and it's a devastating diagnosis. So they put it off.

Now, what happened to Valentin in the following years is although she hadn't tested, she became absolutely convinced she had Huntington's disease. She could just tell she had it. Organization problems and anxiety and anger outbursts are common at the beginning of Huntington's disease. She began having arguments with her husband or if she went to the airport, she couldn't organize her documents.

[01:03:39]
If she was walking, she'd walk into walls. So she was aware that her symptoms were accruing, but she was frightened to have the test, to have it confirmed, because the minute it was confirmed for her, her children were at a much higher risk. And she just couldn't face the idea of looking at her children and thinking, I'm going to die, and you've got a 50, 50 chance of going the same way.

So she actually waited about 20 years to have the test. And she only had the test when she was so disabled by these symptoms that she realized she just had to have it confirmed. And when she went and had the test, it was negative. She didn't have it.

[01:04:14]
Oh, my God.

[01:04:14]
Oh, my God. Well, in that case, I wish she had had the test, obviously.

[01:04:21]
But you see that work with that strong. You see, because all of her little symptoms didn't all go away. She still got flustered in airports, but it didn't get out of control. And that was what was happening, is she's noticing little things. And because she thought she has Huntington's, then she was examining her body and thinking, what's going to happen? Because she'd seen her mom get sick. She knew exactly what was going to happen next. So she was really focused.

But imagine if 20 years ago she had the test and it was positive. Then every one of those symptoms, none of which were due to Huntington's, would have persisted. That's the difficulty with knowing you're at risk of a disease that might not happen for 20 years. The symptoms will start long before the disease starts. And every ordinary thing that happens to you, that happens to all of us. Every time you lose your keys, every time you trip over a paving stone.

[01:05:12]
Yeah, it's confirmation bias. You're excluding a ton of data and focusing on a very tiny bit of data to validate what you already have. A hunch is true.

[01:05:20]
Exactly. And it shows the power of thinking you have a disease. And that's why it's so important to this discussion about pre diabetes or autism or adhd. If you think you have the disease, some people will display the features of the disease, and that can be really hard to overcome.

Thanks so much for transcribing this as I really wanted to know what she was going to say about Huntington's. She's using this case as an example of psychosomatic illness, and it's a good one, but the real lesson is that people with the Huntington's gene who don't want to be tested should be counselled that if they develop symptoms, they could be either due to HD or harmless anxiety, and so if they develop symptoms, it would be a good idea to get tested.

And I completely agree, @Utsikt , it's in really bad taste to use this anecdote about such a horrific disease while promoting a book about overdiagnosis.

 

[V.R.T.]

I think the interview quoted above shows both what makes O Sullivan a paticularly ghoulish example of the BPS cult and also how she exposes their weakness more than say, Alister Miller or Simon Wessely.

O' Sullivan nakedly and unashamedly lays out just how wildly expansionist psychosomatic medicine is, and how little basis there needs to be for qualified doctors like her to start making folk belief pseudoscience claims that would make Freud blush. She doesn't use the slipperly language her colleagues do.

Those writing essays/blogs about BPS should take note.

 

[Utsikt]

Thanks so much for transcribing this

I just found the site that had a transcription, so the credit goes to the developers!

but the real lesson is that people with the Huntington's gene who don't want to be tested should be counselled that if they develop symptoms, they could be either due to HD or harmless anxiety, and so if they develop symptoms, it would be a good idea to get tested.

On one hand, I believe it’s quite common to believe that you’ve got symptoms before you test, even if you don’t have the mutation.

On the other hand, the people that do get sick often do not understand how sick they are because the neurological changes limits their awareness of their own illness. To them, they are still symptom free.

This is further complicated by the fact that some people just prefer to live without knowing they are sick, even if the have HD.

That being said, I think there is a case for arguing that the person will be better off if they know they have the HD mutation and they’ve come to terms with it, because they can get as much help as possible.

The problem with that argument is that everyone might not come to terms with it.

 

[richie]

A diagnosis which is not helpful now may prove helpful in time. OS has little nuance.

 

[rvallee]

UnHerd’s motto:

I guess that fits well with the BPS paradigm shift narrative.

It's stuff like this that makes the 'skeptic' community a bit of a joke. They are so oblivious to making all the same mistakes and fallacies they so easily notice in others. In fact, they seem especially sold on this magical mind stuff, more than average, to the point where most scoff at the mere possibility of challenging those beliefs.

It's so bizarre.

 

[rvallee]

I thought it was odd for a clinician to lose their patience in this way, as the question posed by Ryan is one that she would meet every day with patients

I've never seen a proponent of psychosomatic ideology actually defend their ideas. They never have to, they can simply say whatever and almost everyone just accepts it as a fact. Among themselves, there is no substantial criticism. They never face real questioning, and almost never step out of ideological bubbles.

So when that happens, they are flustered, and either get angry ("you don't get it!"), or simply make some fallacious appeal to their superior expertise, something that Wessely has mastered quite well. I haven't watched it to check the questions, but I have never seen anyone actually asking any of them hard questions. It's always softballs, usually with an obviously pre-approved "stick to the script".

They've never had to defend their ideology. They literally don't know what to do when faced with real questions. They almost never have to. In the end it's a lot like the wild claims the PACE gang made about us being borderline terrorists, then when they made this argument to a tribunal, for the first time they had to put up or shut up. They shut up. They've since made the same allegations, and others have, but whenever they face real questions, they all fold like a cheap suit.

It's actually funny that O'Sullivan went to a so-called 'skeptic' publication, expecting to be only asked softball questions. And they mostly seem to be, but on asking minimally substantial questions, she flustered, but the host seems to have let it drop. Probably because she would just have left in anger. They really can't face the most basic set of easy questions.

 

[Evergreen]

I just found the site that had a transcription, so the credit goes to the developers!

On one hand, I believe it’s quite common to believe that you’ve got symptoms before you test, even if you don’t have the mutation.

On the other hand, the people that do get sick often do not understand how sick they are because the neurological changes limits their awareness of their own illness. To them, they are still symptom free.

This is further complicated by the fact that some people just prefer to live without knowing they are sick, even if the have HD.

That being said, I think there is a case for arguing that the person will be better off if they know they have the HD mutation and they’ve come to terms with it, because they can get as much help as possible.

The problem with that argument is that everyone might not come to terms with it.

You're right, it's not simple. Are there studies looking at harms associated with getting tested and not getting tested? If so, do they shed light on how common debilitating psychosomatic illness is compared to the harms of getting tested? I.e. can we establish how clinicians can do least harm in HD?

I know someone whose parent had a different neurological condition (not HD) and who thought, a few times, that they were developing the same condition, and worried for years in one case before having it investigated (but were not debilitated by symptoms, just interpreted some normal things as potential signs of the condition and worried). They did not develop that condition. But many years later they did develop another degenerative neurological condition. Would a label of psychosomatic issues or an intervention like CBT have done any good ultimately? Nothing material, I would say. Maybe it would have relieved some distress, but likely it would have just annoyed them. No idea how it would have impacted the process of getting their ultimate diagnosis.

 

[rvallee]

The anecdote suggests to me that O' Sullivan is inordinately distressed by the act of medical diagnosis, because of fears that a medical label will create harm. But somehow, she thinks that a label of psychosomatic illness does no harm.

There seem to be some odd beliefs that a segment of the profession holds about the act of diagnosis being some magical threshold moment. It's even captured in pop culture with the odd framing where "someone's like was shattered when they received a diagnosis of X". Really, that person's life was shattered when they developed X, not when they got a diagnosis. The diagnosis itself is not what caused the illness, but for people like O'Sullivan, it seems like they genuinely believe that the diagnosis itself has as much, if not more, power than the disease itself, to the point where not diagnosing would make the disease less of a problem.

Which is bunk, and so bizarre. But some of the most bizarre behaviors out there make sense when you consider that they hold such beliefs. They really do seem to believe that, as physicians, they have those extraordinary powers to influence people by the mere power of their words. Which, ironically, they do, but far more when they fail to do their job. And the harm done by psychosomatic ideology is easily 100x worse than even the worst of their imaginary fears.

It's also especially bizarre to be so negative about the act of diagnosis, when literally everything in society regarding disability demands a formal diagnosis. It's literally the entry ticket for all the support that exists. Where, in fact, the diagnosis is what matters, not the disease, because diseases are only accepted through diagnosis.

We didn't build this lousy system, and somehow we're failed because of their blunders. Mercy.

 

[Utsikt]

You're right, it's not simple. Are there studies looking at harms associated with getting tested and not getting tested? If so, do they shed light on how common debilitating psychosomatic illness is compared to the harms of getting tested? I.e. can we establish how clinicians can do least harm in HD?

I don’t follow the field closely, but I’ve only read qualitative studies on pre-symptomatic testing. There’s a wide range of experiences, including minors wishing to be able to test before turning 18.

This is an example: https://pubmed.ncbi.nlm.nih.gov/32162754/

 

[Utsikt]

but for people like O'Sullivan, it seems like they genuinely believe that the diagnosis itself has as much, if not more, power than the disease itself, to the point where not diagnosing would make the disease less of a problem.

Bingo. This is the core of BPS - that beliefs about yourself can manifest symptoms.

 

[Evergreen]

There seem to be some odd beliefs that a segment of the profession holds about the act of diagnosis being some magical threshold moment. It's even captured in pop culture with the odd framing where "someone's like was shattered when they received a diagnosis of X". Really, that person's life was shattered when they developed X, not when they got a diagnosis.

I'm so glad you said this. This is something that really irks me in media representations of illness. It makes sense in some contexts, for instance, if you go for routine screening, feeling perfectly healthy, and find out you actually have stage 3 cancer. But in conditions like ME/CFS, the shattering of your life happens long before a doctor labels it. And what the label can do is give you access to info that will help you manage your condition. Unless you're funneled to Stone's website in which case, hopefully someone will give you a better label soon.

 

[richie]

OS is right to point out that PS is also a thing and it is vexing to hear people talk otherwise. But consistent with psychosomatic does not automatically mean psychosomatic and should there not be an onus on those who say sth is PS to demonstrate that? She says that there are no consistent findings among LC but how many have been tested for e.g. the Dutch muscle changes? Is she familiar with the trial and can she say that the results do not indicate a unifying feature in at least a cohort? If she can advise as to any psychological therapies for the muscle changes she would be welcome to do so at the risk of overdiagnosing PS. Then she stealthily moves on to "those with psychomatic LC" who may represent a specific group but in one breath with all LC. Sly work. intentional or not.

IMO she was given something of a speech rather than a forensic interview.

 

[Utsikt]

OS is right to point out that PS is also a thing and it is vexing to hear people talk otherwise.

What do you mean by «PS is also a thing»?

 

[Cinders66]

This style of medicine really thrives in a UK style state health system where there is no patient power . I can’t see her working in any type of patient-dr partnership. She really really didn't like how the concept of LC started with patients. Also She will be lapped up by those who want to cheer on the idea of waste and uneccesary Medical care and benefits. It is also a nonsense that psychosomatic medicine is treated as serious as physical, because surely the assumption , as with Chronic Fatigue syndrome of yore,is that treatment is through relaively cheap psychotherapy, rehab or the refusal to support sickness behaviours etc rather than extremely costly research and medical care to address physical abnormalities . Listening to those two othering the lesser folk who can’t deal with life and imagine they’re still sick and are duped by hysteria, it's faulty beliefs & hyperchondria again …..

 

[richie]

What do you mean by «PS is also a thing»?

That psychosomatic symptoms exist and that they may be very serious.
The assertion of this truth should however be shorn of insinuations that PS diagnoses are less harmful than physical ones, that over diagnosis is diagnosis which does not help (when?), that the interests of the so called "worried well" should trump those of the untended sick, that we know enough to tell who is "worried well" and who isn't, and the usual BPS propaganda.

 

[Utsikt]

That psychosomatic symptoms exist

I’m sorry for asking again, but what do you mean by ‘psychosomatic symptoms’?

You contrast psychosomatic diagnoses to physical diagnoses, but in terms of physics, we are purely physical, even what we commonly refer to as our ‘mind’.

 

[richie]

You get stressed and your eczema gets worse. Cause, symptom, process, resolution. All occur in the physical world and may require different form of intervention - behavioural, biophysical, psychological, but work stress can be usefully distinguished from an obviously physical insult.

The symptoms are somatic in either case but the nature of work stress cannot be easily communicated by reference to the physical.
A poem may move to tears (or not) but you would not capture this reality by reference to the physical medium of transmission alone if at all.

 

[Utsikt]

The symptoms are somatic in either case but the nature of work stress cannot be easily communicated by reference to the physical.

Work stress is a construct made up of other constructs and so on, that ultimately try to describe how collections of subatomic particles that we call ourselves interact with their surroundings.

And I would say that how the concept of work stress is perceived is entirely contingent on the individual perceiver. For ‘work stress’ to signify anything, you would have to define it. And then define the components of work stress. And then define those components, and so on.

At some point you end up at the physical level.

A poem may move to tears (or not) but you would not capture this reality by reference to the physical medium of transmission alone if at all.

It is all physical, so you have to be able to capture the nature of it through the physical. Doing that doesn’t have to be easy or even possible within our current means.

But we’re getting off track from the topic of the thread. The point that I want to make in regard to this thread is that ‘psychosomatic’ implies that something somatic is caused by something that is not physical (the psycho part). Which simply isn’t possible.

 

[richie]

Just redefine psycho in physical terms according to your philosophy. The problem will then be how to differentiate differentiate phenomena which we instinctivley feel are worthy of distinction esp on the clinical level.

 

[Utsikt]

Just redefine psycho in physical terms according to your philosophy.

Then it is no longer ‘psychosomatic’.

The problem will then be how to differentiate differentiate phenomena which we instinctivley feel are worthy of distinction esp on the clinical level.

Yes, but this challenge doesn’t make the assertion that everything is physical wrong.