2002-ish presentation: Lynne Turner-Stokes (KCL) on MUS

[Esther12]

A bit interesting as there were hints of things that I liked, along with some amazingly bad stuff. I want out!

New link: http://www.eapm.eu.com/tl_files/content/Presentations/EACLPP_Turner_MUS_2002.pdf

Old link that I'm sure was working, but is now not!:
web.archive.org/web/20040604163043/http://www.eaclpp.org/presentations/Turner%20Stokes%20MUS.ppt

A taste of it:

6:

Establish a different attitude

‘Illness’ can be a social condition
Engenders a caring response
Admiration from peers
‘Isn’t she brave!”
Some who has found a prop
Does not necessarily want it removed
Seek medical attention
For confirmation - not cure
Diagnosis is an end in itself

19:

Iatrogenic causes

Medicalisation of pt’s symptoms
Over-investigation
Inappropriate treatment
Especially by more junior doctors
Failure to provide clear explanation for symptoms
Increasing uncertainty and anxiety
Failure to recognise and treat emotional factors

25:

Insight and Exaggeration

Insight does not mean ‘malingering’
Part of the normal human condition to exaggerate
Symptoms not life-threatening
May not perceived as important
May cause the best of us to amplify on occasion
May or may not:
have insight into this behaviour
be prepared to own up to it

Thrown a life-line:

Some will grab it
Others prefer to hang on to their symptoms

26:

Some patients

Require their ‘medical condition’
Part of own strategy for dealing with life
Come to clinic
Not for a ‘cure’
For support and bona fide status
Of ‘being under care of the doctor’
Remove the crutch
They will find another

27:

Secondary gain

Disability may hold advantages for them
Financial / Environmental
Benefits, equipment, accommodation
Support, care and attention
From family , friends / carers
Excuse for avoidance
E.g of unwanted sexual attentions
Social mystique or importance
Having a ‘rare condition’

28:

Recognise and contain

Doctors who try to achieve great change
Will be disappointed
Once identified
Patients should remain in clinic
Seen regularly, but not frequently
By the same senior doctor
Not left to junior staff
Accept symptomatology and disability
Without recourse to repeated investigations
Provide supportive interview instead (preferably with spouse present)
Approach demonstrably cost-effective (Smith et al 1986)

29:

Real difficulty

To identify those patients
Who genuinely want ‘out’
Need an honourable excuse
To surrender trappings of disability
Return to more normal function

31:

Approach to management

Identify features of organic disease
Overlaying psychological elements
Establish degree of insight
Extent to which they recognise
psychological basis for their problems
Extent to which they ‘want out’
Determine the appropriate programme
Physical / psychological / both

 

[Valentijn]

So what were the good parts? The quoted stuff is all horrible

 

[Simon]

A bit interesting as there were hints of things that I liked, along with some amazingly bad stuff. I want out!

A taste of it:

(btw, link doesn't work)

Thanks.

Sometimes we simply have to recognise the wisdom of our betters for the insight as to why we have squandered the best years of our life:

6:

Establish a different attitude

‘Illness’ can be a social condition
Engenders a caring response
Admiration from peers
‘Isn’t she brave!”

So true, I had nothing but understanding, support and admiration from those around me, it was so much more rewarding than my career and social life had been. And don't even get me started on the hero-worship from doctors.

19: Secondary gain

Disability may hold advantages for them
Financial / Environmental
Benefits, equipment, accommodation
Support, care and attention
From family , friends / carers
Excuse for avoidance
E.g of unwanted sexual attentions
...

Yes, so many advantages, but really it was being pestered non-stop for sex that led to me opting for this illness.

Maybe it wasn't so bad and I should face up to my responsibilities in life. Thank you, Lynne Turner-Stokes, for your wisdom and insight.

 

[Esther12]

New link: http://www.eapm.eu.com/tl_files/content/Presentations/EACLPP_Turner_MUS_2002.pdf

So true, I had nothing but understanding, support and admiration from those around me, it was so much more rewarding than my career and social life had been. And don't even get me started on the hero-worship from doctors.

Wessely will talk about these advantages of illness too... maybe our brave researchers are to be congratulated for having so thoroughly eradicated these perpetuating social factors? I've always been encouraged to recover with lashes of biopsychosocial disdain.

So what were the good parts? The quoted stuff is all horrible

Some bits like this sounded like, despite her views, she would not try to screw her patients over financially:

38:

Support any litigation / compensation claim
To its early conclusion

Also, it sounded like her approach to 'managing' them wasn't that aggressive, and that only patients who wanted psychosocial management would have to put up with it:

28:

Recognise and contain


Doctors who try to achieve great change
Will be disappointed

Once identified
Patients should remain in clinic
Seen regularly, but not frequently
By the same senior doctor
 Not left to junior staff
Accept symptomatology and disability
Without recourse to repeated investigations
Provide supportive interview instead (preferably with spouse present)
Approach demonstrably cost-effective (Smith et al 1986)

It was almost like she thought these patients were so hopeless that she wouldn't end up making life too much worse for them, despite her beliefs. (It's a bit dire that I'm impressed by a doctor who sounds like, despite her views, she won't make things worse, rather than expecting any to be helpful).

 

[A.B.]

Ridicule is the next best response to this sort of psychonuttery. Please excuse me for reposting this.

Twenty-five women with peptic ulcers were studied from the psychosomatic point of view. All exhibited profound and overt personality disorders. The majority had been rejected by the mother and turned to the father for support. Ulcer symptoms were precipitated when the supporting figure failed them. Oral aggressive feelings played an important role and were often equated with denial of femininity. This group of women with peptic ulcers had a much higher incidence of overt personality disturbances than the majority of a comparative group of men peptic ulcer patients previously studied, although frustration of dependent wishes was equally important in both groups. The shift in the sex ratio of peptic ulcer during the past 50 years suggests that cultural factors may play a role in the development of this disease.

Written in 1951 when the idea that peptic ulcers were psychosomatic was popular.
http://journals.psychiatryonline.org/article.aspx?articleid=144588

This is what happens when "science" is based on questionnaires, subjective interpretations by researchers, and driven by belief in unproven hypotheses. And it sounds a lot like the drivel in this presentation. The allegedly identifiable psychological, psychiatric, behavioral abnormalities can be explained in many ways, not just via psychosomatic illness. Assuming they're even real and don't just exist in the head of the psychiatrist (see Rosenham experiment for examples of just that).

 

[biophile]

LOL Simon, particularly the part about using CFS as an excuse to stop the non-stop pestering for sex!

CFS symptoms are at least as debilitating as most chronic diseases, how dare patients express concern?

Constantly feeling like shit and decades of struggle,
Relapses without prospects of overall improvement,
Being forgotten or ridiculed by society at large,
"These are a few of my favourite things".

"Part of the normal human condition to exaggerate" was funny, given their own exaggerated emphasis on such factors.

Sarcasm etc are also normal, so in an improvised rant in the same spirit as yours ...

---

Yeah, I just love bragging about CFS and all the awesome attention and social mystique it brings. I'm addicted to the fact that a mere mention of having "CFS" makes people look at me as if I just dropped a loud smelly fart in a crowded elevator. The disdain and disgust from society at large makes me feel like an important part of the human race.

Getting a fraction of the income, living in a small run down apartment, having trouble paying bills, and unable or struggle to do hobbies, taking hours to do what should take minutes; all these things are everything I ever dreamed of as a kid when thinking about my future career, I am so happy and fulfilled with how things are, I don't want it to change!

All the constant admiration from peers makes me feel like a megastar. Talking about CFS just makes me the life of the party, especially the part about not being able to drink alcohol, smoke weed, pop acid, eat mushrooms, or do white lines. Forgetting stuff and not being able to talk for long just makes party conversations so interesting.

The number of friends I have just grew exponentially after getting CFS. My Facebook and Twitter accounts are just overloaded with fans and real friends who follow my every move. Being unable to shower in the mornings without POTS and eventual migraine does wonders for hygiene and self-confidence.

Using the CFS crutch is so empowering and useful. I feel so brave and manly, even better than having buff muscles or cage fighting. All the hot chicks just melt when I talk about PENE prohibiting normal sex, and urinary symptoms are so sexy. Asking for embarrassing help only when needed just makes me feel so much of a man in the eyes of society. I'm a man among men. All the men want to be like me, and all the women want to be with me so they can feel my CFSness.

I crave the medical attention of disbelief. It makes me so excited to be a burden on the health system. Barred from extensive testing and receiving no useful treatment is great. Explaining over and over ad nauseam that GET was unhelpful, and risking another round of GET to amuse a new doctor, does wonders for my health and sense of being believed.

I'm so uninformed about philosophy of mind and medical research that I just can't get past Cartesian substance dualism. There is a strict division between mind and body, psychological factors influencing health is impossible! I attack psychological research if it goes against these preconceived notions, never because of methodological flaws. I swallow every piece of quackery under the Sun without question, I'm just go gullible and love wasting money on fads!

I fear the stigma of mental illness so bad that I'm in a massive denial about my psychological and social problems. My ego is so fragile that my whole world would come crashing down if I dared to consider the possibility that my mind is not in a state of Buddha perfection. Who cares if CFS has more stigma than mental illness and receives even less funding?

My insight is so poor that I woke up one day with a touch of fatigue and freaked out. I talked myself into thinking mild fatigue was paralysis, and I panic at the tiniest tingle in my body, it must be proof of a serious life threatening disease. I can't distinguish PENE from DOMS, or between symptoms of illness from symptoms of transient emotions. I really should snap out of the faulty association between activity and symptoms. All those biological abnormalities that occur after exercise in the research are just coincidence and fueling my delusions.

Ahhh, isn't this truly the good life?

 

[Sidereal]

Hideous quackery.

 

[Valentijn]

It was almost like she thought these patients were so hopeless that she wouldn't end up making life too much worse for them, despite her beliefs. (It's a bit dire that I'm impressed by a doctor who sounds like, despite her views, she won't, rather than expecting any to be helpful).

My interpretation was that the junior doctors would be suckered into investigating and treating symptoms, so the senior doctors should take control to prevent that. Also that they want to keep the unmanageable patients coming in often enough that they don't get fed up and look for a doctor who will actually treat them.

The part regarding benefits might be a concession that their usual stance regarding benefits doesn't work. If they don't help, we stop trusting them, we find a new doc, and we keep fighting for benefits. So her suggestion might be to end the benefits fight as early as possible, so that we don't have to keep believing we're sick to get on them, and can move on to our Magical Cure of Wonder.

 

[Esther12]

My interpretation was that the junior doctors would be suckered into investigating and treating symptoms, so the senior doctors should take control to prevent that. Also that they want to keep the unmanageable patients coming in often enough that they don't get fed up and look for a doctor who will actually treat them.

The part regarding benefits might be a concession that their usual stance regarding benefits doesn't work. If they don't help, we stop trusting them, we find a new doc, and we keep fighting for benefits. So her suggestion might be to end the benefits fight as early as possible, so that we don't have to keep believing we're sick to get on them, and can move on to our Magical Cure of Wonder.

Yeah - I've been so successful managed into avoiding medical interventions (largely as a result of reading Wesslely papers and thinking 'I'd do anything to avoid that') that I can forget that people can end up having a lot of expensive stuff, and doctors can see avoiding that as really important.

 

[Valentijn]

Yeah - I've been so successful managed into avoiding medical interventions (largely as a result of reading Wesslely papers and thinking 'I'd do anything to avoid that') that I can forget that people can end up having a lot of expensive stuff, and doctors can see avoiding that as really important.

It's not just the expense. Investigation puts us at risk of either having proof of pathology or being "harmed" by thinking that being investigated means we must be ill. And they absolutely freak out about the prospect of us becoming permanently hysterical over "minor" abnormalities!

 

[Esther12]

Yes, so many advantages, but really it was being pestered non-stop for sex that led to me opting for this illness.

My partner was just wondering if this meant that MUS were more common amongst us especially sexy people. Has there been a study? It is a psychosocial burden.

 

[Simon]

My partner was just wondering if this meant that MUS were more common amongst us especially sexy people. Has there been a study? It is a psychosocial burden.

Your partner may be on to something - and surely this is a worthy topic for a PhD thesis. I hope someone rises to the challenge.