Simon Wessely and "all in the mind"

[Enid]

Good points Mishmash - I think we carry something of a burden of a "paternalistic" approach to patients here where a self promoting few are able to blind so much of the rest. (the creep of psychiatry in the absence of knowledge).

 

[Esther12]

Did I really say that about Wessely ? And then I remember how dreadful I was feeling at the time.

Sorry mark - I didn't mean to imply you'd said anything. I think we've had a miscommunication. (I'm knackered today so could have misunderstood you now).

I hate to say this, since I support some form of nationalized health care in the US. But even though (I'm sure) there are many kind and qualified doctors in the British NHS, the organization seems to represent a necessary, but disliked bureaucracy to many Brits.

Problems like CFS are probably where a system like the NHS is worst. I think that there are also cultural differences - there's probably a greater level of deference in the UK, things like that, which make it easier for the sort of problems which surround CFS in the UK to flourish.

'Paternalism' is a problem too, as it can be used to justify all manner of things.

 

[Quilp]

[quote/

In fact, no doc I have visited has ever blatantly called me depressed or a liar (which seems to be Wessley's modus operandi). [/quote]

Hello Mishmash

That's one thing that Wessely will never do openly. He's far too canny for that. The message is always the same, but his rhetoric and his audience are skillfully crafted.

You wouldn't want to buy a second hand car from this man.
He'd leave you thinking you'd got a bargain, but in reality you can expect the wheels to have fallen off just as he's out of sight......and you'd have a job getting hold of him again. He'd revert to only speaking Latin ( but he'd never raise his voice and sympathy's would abound )
He's the most charming man you'd never want to meet.

As for doctors, they are in my opinion, far more subtle than they were when I first became ill. The message is the same but it is brought to you with a forced smile, served with a nodding burrowed frow and an unconvincing dish of sympathy.

Esther12 - sorry Esther I was referring to my own posts in the past. I have made fun of Wessely in a few threads - one in which he brings Peter White ''back to life'' and I have cringed. Other times I have called him a snake and it has done nothing to advance the argument except make me feel better
I admit to being ashamed when I see some of my own postings in the past, but I remember feeling so ill that at the time I really didn't care.

I came across as being really angry, some would say childish, but I didn't care; some would say it was pointless, but I didn't care. Some would say I was wrong to do so, but I didn't care. I didn't care because I was hurting so much, and yet being told it was ''in yer head son'.
I do feel ashamed, but looking back how else can I fight back. This is the only way I know how.

You have furthered the argument positively in my opinion. I know others have referred to Sonia Poulton's blog, but I would point others to yours first.
I hope others reading this have the chance to read it like I did ( although I did it in bite sizes ) If there is a better thread/blog on Phoenix Rising, I haven't seen it.

Kind regards, Mark

 

[Enid]

I think we can understand Mark - those of us who have come face to face with "in yer head" (I had been passing out at that time) might be allowed some anger, but I hope anything OTT from me at any particular time has/will be moderated. What's more if one were able to attend a CFS "clinic" then acceptance of depression was required.

And no I wouldn't buy a second hand car either it might finish up like this.

 

[Esther12]

It's easy to get testy and confused about things. As long is one is open to learning new things, and changing one's beliefs, then one can always improve. As I said, I think I've become more hostile to those who have taken psychosocial approaches to CFS as I've read more of their work. Maybe I'll find a new argument will change my views again? Who knows?

 

[Esther12]

Just reading some evidence Wessely gave to a select comitee on military health:

http://www.publications.parliament.uk/pa/cm201012/cmselect/cmdfence/uc762-ii/uc76201.htm

I thought someone else had mentioned that he and Clare Gerada don't talk openly about being married to one another, yet he did here:

Professor Wessely: We should have my wife here. She is the chairman of the College of GPs. When she starts talking-

There's also some of the usual stuff about the danger of people's being worried about suffering from something called mild-traumatic brain injury, etc, but it's nothing new.

This bit seemed a bit funny, in light of the spin and manipulation which surrounds the promotion of his therapies for CFS:

Professor Wessely: Please God, we are not advocating greater regulation. In the talking therapies market it is like trying to regulate water. It cannot be done. Information can be regulated, however. People need to know, when they are using treatments, that there is long-term evidence of effectiveness, good governance, good outcomes, good audit and good clinical practice. They need to know that, and they need to know where there isn’t that.

 

[SilverbladeTE]

regulating information?!
what planet does that man live on?

one can have standards by statute, but you sure as hell CANNOT "regulate information", unless you are perhaps, the Khmer Rouge.

 

[Esther12]

I'd just been linked to this paper from the 'Down With All That' blog:

http://downwithallthat.wordpress.co...king-the-docs-overstepping-the-mark/#comments

I don't know much about the areas addressed there, but wanted to make some of my own points.

Medically unexplained symptoms: exacerbating factors
in the doctor–patient encounter
L A Page MRCPsych S Wessely MD FRCPsych1 2003

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC539474/

It's a pretty good paper for illustrating a lot of the things I find annoying about how Wessely writes: playing with words, coming up with less well understood ways of saying the same thing, constructing narratives with selected lists of 'possible' explanations, or 'proposed' interventions that only ever reflect his own assumptions.

The first sentence is worth mentioning, because I often see CFS patients being criticised for talking as if managing medically unexplained symptoms' is just used as a to mean 'treating somatization':

This paper proposes that well-intentioned actions by
medical practitioners can exacerbate or maintain medically
unexplained symptoms (MUS)—i.e. physical symptoms
that are disproportionate to identifiable physical disease.
The term is now used in preference to ‘somatization’.1

I also like Wessely's characterisation of the criteria for Somatization disorder, which is different to those I have seen:

Patients with the highest number of MUS are likely to fulfil
the psychiatric criteria for somatization disorder—at least 2
years of multiple and various MUS, with persistent refusal
to accept advice and reassurance from doctors; functioning
impaired.

Those stubborn patients.

The medical
specialties employ shorthand descriptions for particular
clusters of MUS including irritable bowel syndrome, noncardiac
chest pain, fibromyalgia, chronic fatigue syndrome
and repetitive strain injury.

So if we can dig back through those definitions, CFS => MUS => Somatization => refusal to accept advice and reassurance from doctors.

Now that I'm aware of the evidence and studies addressing the impact of CFS on people's lives, how ineffective the treatments available are, and the low rate of recovery, my willingness to accept reassurance from my doctors and make life decisions based upon those reassurances seems rather foolish.

Wessely et al. seem to have a bit too much confidence in the extent to which their research has allowed any real understanding of the causes of MUS. I don't think that had any more knowledge of predisposing and precipitating as perpetuating.

Although research has gone some way to explain the
predisposing and precipitating causes of MUS, there is little
information on the factors that maintain such symptoms and
resulting behaviour.

Factors predisposing to MUS are female gender,6
childhood experience of parental ill-health (particularly
paternal),7 childhood abdominal pain8 and lack of care in
childhood.9 High rates of ‘life events’ occur in the period
predating the onset of MUS in a pattern similar to that seen
before the onset of depressive illness.10 In those with
somatization disorder there are high rates of personality
disorder.11

5 years earlier he'd published a paper looking at childhood abdominal pain's association with adult MUS:

http://www.bmj.com/content/316/7139/1196

They found:

Childhood pain was only very weakly associated with abdominal pain and headache at 36 years but was associated with increasing numbers of physical symptoms at this age. Because there is a strong association between psychiatric disorder and physical symptoms, psychiatric disorder was added to the model, and this led to the association between persistent abdominal pain and physical symptoms in adulthood failing to reach significance.

So often with these studies, they find that bad things correlate with other bad things. This is unsurprising, and uninteresting, particularly with subjectively defined illnesses. My expectation is that difficulties and hardship in childhood are likely to be associated, to some degree, with difficulties and hardships in adulthood - be it for genetic, developmental, social or any other reason. There are going to be so many potential confounding factors that only very thorough research would be able to provide really meaningful and reliable results, and I've never seen Wessely be involved with anything that reaches this standard - it would be difficult to achieve. That many of the associations founds are so uncertain might have been worth mentioning. With CFS we've seen a number of studies reporting increased rates of personality disorder compared to healthy controls, and a number of studies showing no increasing in PD compared to MS patients, and a recent one showing no increase compared to healthy controls when PDs are not diagnosed in ways known to give a high rate of false positives (an obvious flaw with the earlier studies, which any who gave a shit about patients would have complained about).

Just reading the two Wessely studies on childhood stomach pain, one found

There was a modest association between traits such as day dreaming in class and having low levels of energy and persistent abdominal pain.

The other found:

It is difficult to show a consistent relationship with the teachers' ratings of behaviour in the children. There were no associations between low energy, day-dreaming or disobedience, and unexplained hospital admissions.

There's an endless stream of these sorts of minor associations which turn up in some studies and not others. Generally, their only value seem to be justifying vague prejudices against those with MUS. This sort of casual approach towards lumping patients together and making claims about them should be understood as equally morally dangerous as when this approach is taken to different races.

Again, this stuff is just creating a narrative, rather than presenting evidence:

What are the factors that lead to persistence of MUS in
some individuals? Examples of possible precipitating events
include chest pain induced by hyperventilation12 and muscle
ache after unaccustomed exercise.13 Some of these
mechanisms may become chronic. Additional psychosocial
factors may be ‘secondary gain’10 (for example, when
chronic pain spares a parent the burden of caring for a
difficult child) or maladaptive psychological coping
strategies.14 In this paper, we focus on the adverse effects
of medical interventions at various stages of the doctor–
patient encounter.

Then there's this:

An earlier cross-sectional study by the same group had
aimed to identify possible iatrogenic factors in the
persistence of pain.20 47% of the chronic-pain patients
had received more than five types of treatment for their
pain (regarded as overtreatment) and 39% had been given at
least one inappropriate explanation. Qualitative evidence
shows that patients with MUS can experience medical
assessment as hostile and adversarial.21

The implication
is that a poor doctor–patient interaction in IBS and kindred
illnesses may lead to repeat consulting.

Really? Inappropriate, false or misleading medical explanations might lead to more consulting? Not trusting one's doctor could lead to an attempt to get different opinions? Is Wessely going to suggest tighter regulation, and more serious disciplinary action for those medical staff who make false or misleading claims to patients? It's not likely, is it. More likely that further research will need to be funded to better understand how to manage and manipulate patients in to believing that they can trust their doctors: the deconditioning and fear-anxiety models now seem to be so debunked that these dishonest narratives have passed their sell-by date, but I'm sure that new ones can be found.

When asked
about past advice from doctors, the group with medically
unexplained symptoms were significantly more likely to
recall being told their pain was all in the mind.

Occasionally the GP or specialist will decide to refer the
patient to a psychiatrist. This is neither simple nor
straightforward. As one expert notes, ‘It is a commonplace
clinical observation that somatising patients—more than
any other group—resent psychiatric referral or at least are
very sceptical of its purpose’.16

When the psychological work around MUS is so often used as an excuse to mistreat patients, it's not that surprising that patients might become less enthusiastic about seeing a psychiatrist. There is also a sense that some doctors turn to psychological explanations as a default when they cannot medically explain symptoms, and this is is no a well respected approach.

Reassurance

Reassurance is particularly important with patients who are
hypochondriacal or have MUS. Some qualitative work has
looked at the experience of patients with MUS.34 Patients’
accounts of their doctor’s explanations were categorized
into three types—rejecting, colluding and empowering.
The authors suggest that empowering explanations—i.e.
explanations that make patients feel they have some
influence over their symptoms—are most beneficial
individually and to the health service.

So in a qualitative analysis, the authors lumped explanations in to the categories 'rejecting', 'colluding' and 'empowering', that they decided 'empowering' are the most beneficial. This astounding result has clear implications for how patients deserve to be spoken to.

I wonder which would be best out of 'Good', 'Bad', and 'Ugly'?

Also, they don't account for the possibility that there could be some correlation between a patient having problems which allowed them greater influence over their symptoms, and coming to explanations of their illness which make them feel that they have influence over their symptoms.

The whole paper is available here, and it's pretty typical rubbish. The 'collusion' section stood out to me as being especially bad.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC27727/

The positive empowering explanations do seem quite dodgy and manipulative to me.

The adoption of a label such as IBS, fibromyalgia, CFS or
repetitive strain injury affords the sufferer legitimacy,
avoids the stigma of a psychiatric illness and ensures that
dysfunction is not seen by others as imaginary—in other
words, it allows entry into the ‘sick role’.37

Ho ho ho ho. That's right Simon, that what the adoption of the 'Chronic Fatigue Syndrome' label does. You really are a world class expert on these matters.

In two studies, membership of a patient
organization was associated with poor prognosis.52,53 Even 225
if this does not prove cause and effect (since membership of
a self-help group is not randomly allocated) the finding can
still raise the possibility that aspects of group culture are
maladaptive—perhaps promoting emotional support and
legitimacy at the expense of continued disability.

This point prompted this letter:

The comment by Dr Page and Professor Wessely (May 2003 JRSM1) that 'the views propagated by [support groups] can encourage inappropriate illness behaviour' needs challenging. Certainly, membership of patient organizations may well be associated with a poor prognosis, since it is commonly when the outlook is poor that one needs the support of a group. Other reasons may include the lack of social and family support. But in my experience of cancer support organizations for the past 16 years, the aim is normally rehabilitation, not 'continued disability'. Unfortunately, some conditions, such as radiotherapy damage, are progressive and untreatable, and only other people in the same boat can understand. Another problem that perpetuates the 'sick role' for cancer survivors is the insistence by oncologists on regular check-ups even after the five-year mark is reached.
The reason many people continue to be members of support groups after they themselves have been successfully treated is that they wish to give voluntary help to others in their turn, after appropriate training. This is hardly maladaptive behaviour.

There were a few other letters sent too, here are a couple I picked out:

Unfortunately the important paper by Dr Page and Professor Wessely (May 2003 JRSM1) has served to widen the gulf between UK and USA physicians. Just as we have struggled to acquaint our non-psychiatric colleagues on the spectrum of conversion, hypochondriasis, somatization and factitious disorders as described in the DSM IV we are now presented with a new acronym MUS [medically unexplained symptoms]. US psychiatrists and medical colleagues would not know a MUS from a mouse so I would respectfully urge we stick to the terminology we all understand.

A new name may convey new understanding or mask questions that are unresolved. I am not sure where medically unexplained symptoms (MUS), proposed by Dr Page and Professor Wessely (May 2003 JRSM1), fits into those roles.
MUS surely depends upon who is providing the explanation? If I were to go with my somewhat foggy gastroenterological knowledge, based on my Membership examination, and do a busy GI clinic I imagine that I would reach fewer diagnoses than a general physician with an interest in gastroenterology. In turn the generalist might do less well than a specialist gastroenterologist, who might do less well than an upper GI superspecialist, and so on, if one looked at the subset of patients proven to have upper GI problems as the outcome.
As a neurologist interested in headache I see patients labelled with various terms, usually as functional, who have a clearly definable headache syndrome. It is rare in my experience to encounter undiagnosable headache, yet this is often a symptom quoted in such research.2 The unexplained portion seems to have been inadequately explored in the sense that those providing the data were not sufficiently expert to explain it. This brings a question of what is sufficient. We do not accept blood pressure information from faulty devices, so how can such research accept potentially flawed diagnoses?
To assure doctors that 30% of patients are medically unexplained is not very helpful as it implies that there is no diagnosis. To say that a patient has an unexplained problem would require that it has been adequately investigated, or at least a complete history taken by someone sufficiently trained to do so. Research in this area surely requires some standard of measurement of the accuracy of the explanation, or lack of it. Perhaps funds directed to MUS might be directed to better training of doctors in some common clinical problems that are misdiagnosed rather than unexplained.

It's now really late.... but I wanted to get this done before crashing. I'm planning to read through and edit tomorrow.

I also stumbled upon this chapter by Wessely that I want to read, but wasn't able to today:

http://books.google.co.uk/books?id=UHTOcIL_m54C&pg=PA323&lpg=PA323&dq="Aching muscles after exercise." lancet 1987&source=bl&ots=WgUeM-mPPd&sig=pKN-nUN4KyqfCl2jOsE3ImVJDJc&hl=en&sa=X&ei=1d2NUJvOFoHZ0QWb7YCYAw&redir_esc=y#v=onepage&q="Aching muscles after exercise." lancet 1987&f=false

 

[Enid]

All for better training in Docs (the generalists) because I think this is where the mumbo jumbo begins. Can't diagnose so resort to "all in your mind" (must have been in their training somewhere as a genuine diagnosis). I thought all I want now is Vincent Price standing at the bottom of my bed and Edgar Alan Poe to complete the picture. How akin to witchcraft the whole experience was, such smooth persuasive tactics employed, only just short of the rack, and one is so obviously ill as persistance and tests revealed subsequently.

 

[Snow Leopard]

To assure doctors that 30% of patients are medically unexplained is not very helpful as it implies that there is no diagnosis. To say that a patient has an unexplained problem would require that it has been adequately investigated, or at least a complete history taken by someone sufficiently trained to do so. Research in this area surely requires some standard of measurement of the accuracy of the explanation, or lack of it. Perhaps funds directed to MUS might be directed to better training of doctors in some common clinical problems that are misdiagnosed rather than unexplained.

Exactly, and to go further, if a syndrome is unexplained, then it justifies more research spending to start explaining it, not merely pretending it doesn't exist.

 

[user9876]

A quote from esther's post:

Factors predisposing to MUS are female gender,6
childhood experience of parental ill-health (particularly
paternal),7 childhood abdominal pain8 and lack of care in
childhood.9 High rates of ‘life events’ occur in the period
predating the onset of MUS in a pattern similar to that seen
before the onset of depressive illness.10 In those with
somatization disorder there are high rates of personality
disorder.11

I think this is an interesting one. The implication seems to be that MUS must be psychriatric due to these causes. However look at the "childhood experiance of parental ill-health". I guess you could claim an explanation that this traumatises a child. But there are other explanations the main one I would have thought was that what ever the cause it is genetic or that there is a set of diseases that are more likely given a genetic explanation.

The first two of these factors would fit with MUS being explained by autoimmunity. However clearly this explanation doesn't fit Wessely's model so he simply ignores them. It seems like intellectual lazyness to assume a model and look for supporting evidence without looking at the quality of the evidence or for other explanations.

 

[natasa778]

A quote from esther's post:
I think this is an interesting one. The implication seems to be that MUS must be psychriatric due to these causes. However look at the "childhood experiance of parental ill-health". I guess you could claim an explanation that this traumatises a child. But there are other explanations the main one I would have thought was that what ever the cause it is genetic or that there is a set of diseases that are more likely given a genetic explanation.

Or that they relate to inherited metagenome. But this area of science is so many light years ahead from W&co trenches, I wouldn't expect they even know about it.

 

[Enid]

Can't help commenting on "high rates of personality disorder" classification used so freely by the psyches - one wonders if they themselves might have it (whatever it is in their book).

 

[Shell]

Can't help commenting on "high rates of personality disorder" classification used so freely by the psyches - one wonders if they themselves might have it (whatever it is in their book).

I am one of those ex-psychi nurses who doesn't believe in personality disorder. It sprang up out of nowhere to explain patients who did nasty things and expanded to cover patients who "seek attention" which covered just about anyone with serious illness requiring more than a 5 min GP appointment. It's a load of crap. Frankly, I think there is more evidence that fish can ride bicycles than that there personality disorders.
I nursed a couple of people who had been dx with the old psychopath label. Certainly they were impulsive, nasty at times and didn't seem to understand the basics of right and wrong. However they also had serious pychotic illness to deal with and were on a truck load of toxic medication. One patient in particular sticks in my mind because he had such developmental delay emtionally. Was it a side issue to his schizophrenia? Was it that he wasn't a very nice person and this was magnified by mental illness? Or were the drugs stunted his ability to make good decisions? Or was it a combination of the lot? Who knows? We certainly didn't.

I might just believe in narsisstic personality disorder only that would let Wessley off the hook. I think he can help it

 

[Sean]

I am one of those ex-psychi nurses who doesn't believe in personality disorder. It sprang up out of nowhere to explain patients who did nasty things and expanded to cover patients who "seek attention" which covered just about anyone with serious illness requiring more than a 5 min GP appointment. It's a load of crap. Frankly, I think there is more evidence that fish can ride bicycles than that there personality disorders.

+1

 

[Sean]

The adoption of a label such as IBS, fibromyalgia, CFS or
repetitive strain injury affords the sufferer legitimacy,
avoids the stigma of a psychiatric illness and ensures that
dysfunction is not seen by others as imaginary—in other
words, it allows entry into the ‘sick role’.37

It is the uncritical certainty, the lack of appropriate doubt and caution and restraint, the failure to properly explore contrary evidence and alternative interpretations, in the endless rain of ex cathedra pronouncements like this from Wessely that most disturbs and angers me.

That quote is just straight propaganda in service of a pretty nasty psycho-drama morality-play view of the world, (which, surprise, surprise, has people like Wessely at its apex), and it is a good example of just how he has poisoned scientific and public debate.

 

[meandthecat]

I so agree sean, once labelled you lose your humanity; the struggle is then about the label.
I reject the label of CFS but in doing so I don't 'undo' it I merely add levels of non-compliance and so more evidence to the medical mind of a psychiatric component to my condition.

I went recently for a minor surgical procedure, because of the CFS diagnosis my GP described me as depressive; I then had to convince the surgeon that I was worthy of the op' ,a hernia repair. He thought that perhaps I would not be capable of recovering from such an insult and would use it as an excuse for what! I don't know... and neither did he because he knew nothing about me and didn't need to ask...... because I was labelled.

To be fair to him, he was an old school no-nonsense surgeon, he did listen and made up his own mind and went ahead with the op. What was sad was that we had to go through all that crap first.

The label enables clinicians not to engage with the patient but instead to impose a solution which suits them. Medicine as an imperial power enforcing a colonial mandate upon the sick.
In the British Empire the worst colonial crime was 'going native'; forgetting whose side you were on, being swayed by your humanity and treating the locals as your equals. ring any bells......

With the Jimmy Saville child abuse scandal growing larger everyday and the victims finally able to speak of damaged lives and the stigma of not being believed I wonder how long it will take for medical abuse, particularly psychiatric , to attract the same degree of social opprobrium. Is the damage any less?

 

[Esther12]

Wessely's concerned about some of the misunderstanding's which surround his field:

‘We need to work to reverse the perception that psychiatry is isolated from the rest of medicine, and at the same time address common misunderstandings – such as that psychiatry is not sufficiently scientific, that our patients don’t get better and our treatments don’t work. None of these are true. But what is true is that psychiatry has a bright future, and psychiatrists are happier and more satisfied in their work than colleagues in other areas of medicine. Unless we get the message across what an exciting specialism psychiatry is and make these changes to training and capacity, it will have negative repercussions for the future of mental health research, and in turn impact on the profession, and finally those unlucky enough to suffer from mental disorders.’

http://www.kcl.ac.uk/newsevents/new...spx?utm_source=twitterfeed&utm_medium=twitter

The trouble is that people's perceptions of the efficacy of his treatments, and the scientific nature of psychiatric research is wrong.... not that masses of psychiatry is a quackfest, and CBT is far less effective that those making money out of it like to claim.