Webcast: (Medically Unexplained) Physical Symptoms: A Scientist Practitioner Approach June 8 Trudie Chalder

[Joan Crawford]

So basically its all Conversion disorder. So why keep making up names, 'creating/inventing' syndromes/disorders other than to 'pacify' the patient (as they appear to be doing with FND).

Indeed. The proliferation of poorly defined concepts makes my mind boggle.

MUS
SSD
BDD
FND

Ad nauseum

Renaming it makes no difference - patients know they are being largely patronised, minimised, dismissed.

 

[Invisible Woman]

I just cannot get my head around the logical inconsistencies, failure to acknowledge the possibility of harms and total disregard for patient wellbeing.

Listen to and believe the patient - but only when they tell you what you want to hear. If they need to tell you there's a problem then they are the problem.

As we're only hearing what we want the patients left in our wake, at best no better but possibly significantly worse, will now have their faith and trust in mental health professionals wholly undermined. Having persuaded them they're mentally ill & failed to help them, indeed blamed them, where are they now supposed to go to get the help they need because of the iatrogenic harm caused?

The nod to safety is only suggesting they go to the doc if they have new or exacerbated symptoms that persist for more than two weeks. However, it seems fairly likely, unless it's something new and obvious, the GP is going to assume the symptoms are further evidence of previously diagnosed MUS. MUS being an unfalsifiable diagnosis.

So a patient wrongly diagnosed with MUS is stuck in a loop. Any health complaint made will simply reinforce the diagnosis. Having the diagnosis puts you through an unthinking process that is potentially extremely harmfu! to their mental health & the only route available for support with that additional burden of harm is the clinic, team or person who harmed you in the first place but denies their treatment causes harm.

Never mind moving into the world of making money off apps, this lots should consider investing in funeral homes to further maximise they're advantage.

Edit - removed duplicate word.

 

[Mithriel]

They treat MUS as phobias, but if someone is being treated for a spider phobia is it sufficient for them to say thye aren't frightened any more or does the therapist want them to be able to look at a picture without panicking? The endpoint must surely be to not panic when they see a spider not to say they are fine but still have an attack in real life.

Yet that is what happens with MUS.

They keep talking about trauma causing MUS but there are now many refugees in the UK who have experienced major trauma. Are the clinics full of them? I suspect that underlying this theory is that only people who are "weak" can't withstand trauma and retreat into disease.

 

[Joan Crawford]

They treat MUS as phobias, but if someone is being treated for a spider phobia is it sufficient for them to say thye aren't frightened any more or does the therapist want them to be able to look at a picture without panicking? The endpoint must surely be to not panic when they see a spider not to say they are fine but still have an attack in real life.

Yet that is what happens with MUS.

They keep talking about trauma causing MUS but there are now many refugees in the UK who have experienced major trauma. Are the clinics full of them? I suspect that underlying this theory is that only people who are "weak" can't withstand trauma and retreat into disease.

I agree it's not sufficient for a patient to simply say that they aren't frightened anymore - there ideally needs to be objective / observable evidence that the patient is indeed not phobic anymore at the end of therapy. For me, that'd be a patient can happily look at pictures; think about spiders (and movement) and so forth and I'd go as far as being happy sitting in same room and closely to a spider and be fine with it. If that was enough fine - but I'd also encourage a patient to be happy to perhaps even hold a spider or be right next to it and be happy to watch it move about it's business. Then I'd be inclined to be thinking this is not an issue for this person anymore. The outcome would need to be realistic, measurable/observable ideally, relevant to real world functioning (as in spiders no longer cause upset/avoidance in daily life) and agreed with the person being treated. In a clinical trial that'd be agreed in advance and the patient would need to be happy to agree/consent to the end point. So, in that respect a bit different to everyday clinical work but, in my opinion, there needs to be accountability and demonstration of effectiveness. Otherwise, it's possible therapy could get reduced to people being nice to each other...... achieving very little, pretending that spiders are just fine - whilst still being actually scared out of their wits and avoidant. Just don't want to lose face in front of the 'helpful' therapist.

I agree with you re your comment: "only people who are "weak" can't withstand trauma and retreat into disease." I think that's one reason why patients find the whole 'CBT/GET' issue to be offensive - that's the underlying, unsubtle social message. And this jars with people's identities and view of self - it's an assault on the patients' sense of self. I think some patients feel this as badly as they would a physical assault.

 

[Mithriel]

I am not completely against CBT. I have an autistic grandson with severe social anxiety, he can't interact with anyone except 3 of us. He was given CBT as he worsened as a teenager. They were very kind and he was given reassurance so he accepted his condition instead of feeling a failure. Starting as suicidal because of the distress he was causing the people he loved he came to accept he was just different.

Eventually, he learnt all the tricks and things they could teach him and was discharged. He was luckier than others in the area, but his treatment was so different to the one used for ME. he finished better able to dela with life, even if not cured.

The LP especially but CBT and GET are all designed to make us feel we could be doing it if we really wanted to put in the effort. We start thinking we are coping quite well but then get we are not actually ill but using it as a way of ducking our problems. We are not different from other people, it is just that we interpret normal sensations as feelings of disease - in other words we feel pain that normal people would just shrug off and think we are in agony.

When we can't do what is asked of us we are told our behaviour is too entrenched - out own fault for digging ourselves in too deep - and abandoned.

It should not be called CBT it bears so little resemblance to other types.

 

[Sean]

Psycho-behavioural therapies are not objectionable, if they are appropriate, actually work, and are safe.

 

[JemPD]

I agree with you re your comment: "only people who are "weak" can't withstand trauma and retreat into disease." I think that's one reason why patients find the whole 'CBT/GET' issue to be offensive - that's the underlying, unsubtle social message. And this jars with people's identities and view of self - it's an assault on the patients' sense of self. I think some patients feel this as badly as they would a physical assault.

Indeed, having experienced both I can say that the physical assault is utter trivia in comparison.

We start thinking we are coping quite well but then get we are not actually ill but using it as a way of ducking our problems. We are not different from other people, it is just that we interpret normal sensations as feelings of disease - in other words we feel pain that normal people would just shrug off and think we are in agony.

This. I find it grossly insulting to my intelligence to suggest that I cant tell the difference between normal & abnormal sensation. I was 30 when I became ill, not 3.
I was/am well versed in what is normal sensation. But of course anyone who rejects their theory about themselves, particularly if they are upset or insulted by it, is simply in for more derision because they are clearly rejecting it because they don't want to hear an unpalatable truth about themselves. It's quite a moral judgement they are putting on us with their fancy, patronising words. Couching it with "there there dear, it's not your fault you're weak" just makes it worse iyam.

 

[Sean]

They feel better – and she believes them. Happy to take patients word for it. Whether they can go to work, make dinner, stand up or walk anywhere is not on her radar. She doesn’t see the relevance of objective, real world measures at all.

She did when – as one of the lead authors – she helped design the 'definitive' PACE trial. It was only after it became clear that they were not getting any positive results on any objective outcomes that they, and their like-minded colleagues, started downplaying, misrepresenting, ignoring, and eventually completely dismissing the relevance of objective measures.

They know and have always known the importance of using objective real world measures (or adequately blinded subjective measures). They just can't admit it.

No objective evidence of improvement or recovery presented.

Difficult when there isn't any.

CBT for MUS suggests that patients have the power within themselves to make changes and recover by undoing classical and operant conditioning which are maintaining symptoms.

And hence are also to blame for any failure to get better.

At one point she shared “we don’t know what the cause is” but that contradicts her CBT model.

Chalder, et al, won't survive a comprehensive collation and cross-reference of their arguments and claims. It just doesn't add up.

One of many beefs I have with MUS is the risk of misdiagnosis.

This might be the hook to get the rest of UK medicine to pay attention and understand that this nonsense is very likely to delay diagnosis for their patients and hence dilute treatment benefit. Pretty sure their patients, or their patients' surviving relatives, won't be too pleased when they find out about it.

By choice. Knowingly.

They are deliberately constructing an unfalsifiable model. No greater sin in science.

 

[rvallee]

This might be the hook to get the rest of UK medicine to pay attention and understand that this nonsense is very likely to delay diagnosis for their patients and hence dilute treatment benefit. Pretty sure their patients, or their patients' surviving relatives, won't be too pleased when they find out about it.

Which is even already measured and documented. Patients with neurological diseases often require years to get a diagnosis. A few studies were published not so long ago, that early misdiagnosis is rampant in Parkinson's disease, MS and many other diseases with significant neurological symptoms.

I don't understand how no one in medicine seems bothered by this. The mantra that is always repeated is "doesn't happen anymore" or that it's so low as to be irrelevant. It's contradicted by evidence and still it gets repeated as an axiom. This means zero chance of improving and with the MUS doctrine establishing itself it's guaranteed to make the problem worse.

 

[NelliePledge]

Ha; she's got another one coming up.........


https://maudsleylearning.com/insights/braincast-webinar-series/

(I see they've also 'done' SW; I haven't watched it)

Braincast, inspiring people, alternate reality

 

[NelliePledge]

Indeed. The proliferation of poorly defined concepts makes my mind boggle.

MUS
SSD
BDD
FND

Ad nauseum

Renaming it makes no difference - patients know they are being largely patronised, minimised, dismissed.

Some patients do, others don’t get it and take what they are told by doctors as the gospel. Like what do you actually do when someone tells you they have Fibro and they also have a diagnosis of FND which their doctor tells them is the umbrella term covering Fibro and ME/CFS. I did nothing in the end it wasn’t someone I knew well enough to be able to suggest they shouldn’t accept everything they are told

 

[unicorn7]

There is such a strong selection bias in patients, which probably confirms their own ideas a lot. The patients that accept these ideas are probably more prone to have trauma in their past or significant secondary depression or anxiety.

I would never accept this nonsense about trauma or anxiety about movement as reason for ME, just because I have absolutely no trauma and never had depression or anxiety. Even if I would have ended up on a consult with these kind of doctors, I would have gone away and never come back. That gives enormous bias in ideas and results. Maybe if you have significant trauma, you are more inclined to think they might be right.

 

[Invisible Woman]

Some patients do, others don’t get it and take what they are told by doctors as the gospel. Like what do you actually do when someone tells you they have Fibro and they also have a diagnosis of FND which their doctor tells them is the umbrella term.

Unfortunately there are some who know they are being told they are vulnerable/weak or mentally fragile because of past trauma and still welcome the diagnosis. It's as though it validates some previous suffering they've had. Ignoring the fact that it also dooms them to suffering in the present & future, stifles rigorous research and is applied to people who don't feel it fits them.

if you argue that it doesn't apply to your own personal experience while respecting they feel differently you'll often be accused of "attacking" them, no matter how cautiously and sensitively you've chosen your words. You'll be accused of being in denial.

The language and tone some doctors use may very supportive and might be a bit ... misleading for some. I saw a neuro who, having barely said hello and seen I had a diagnosis of ME, very sympathetically told me that it wasn't my fault, I was just hardwired differently to other people in a way that made me less able to cope with the rigours of life, stress and so on, but it wasn't my fault. It was just biology.

We had a polite but very frank exchange of views and explained why he was wrong and a complete turnip through choice, not hardwiring. We left it that we would both prefer never to set eyes on each other again. He seemed surprised that I would disagree and be able to hold my own without dissolving into tears. I think he really expected me to be grateful.

Even if I would have ended up on a consult with these kind of doctors, I would have gone away and never come back. That gives enormous bias in ideas and results.

Sadly, some people have no choice. In the UK some people may only be covered by one practice or they may be scared that another GP might be worse. So, as long as they get the minimum assistance they need to survive they may feel they have no choice but to hang in there.

 

[unicorn7]

Sadly, some people have no choice. In the UK some people may only be covered by one practice or they may be scared that another GP might be worse. So, as long as they get the minimum assistance they need to survive they may feel they have no choice but to hang in there.

Of course! I didn't mean this in any negative way. I mostly meant the specialists that make up these theories, what people do they see? I don't know how it works in the UK, do you have choice in the specialist you are able to see?
I have read stories of a few people who welcomed their diagnosis of conversion. They got send to a specialist mental health center and got a lot of help for all their childhood abuse trauma, sexual abuse trauma or heavy depression or anxiety, so of course they would be positive about their treatment.

 

[Invisible Woman]

Something else occurred to me. Now I'm not saying this is true of everyone or even the majority of people who are accepting of such a diagnosis. I am also not denying that some people have a great deal.of trauma that continues to affect them, I just don't believe I'm one of them. I also believe that it's more than possible that there are people dealing with this sort of thing are at least as strong as me - after all they have been tested in ways I haven't.

However, thinking about a member of my extended family who has a physical & well recognized disease that other family members also have, there is no question that it has been used to suit her own ends & manipulate others in occasion. It seems to me that it is possible that some might see such a diagnosis as a way of legitimately avoiding responsibility.

I know that's an argument that's been levelled at us but the difference being we do what we can and spend our energies keeping up with research, fundraising, highlighting issues with poor or no treat because we want effective treatment, if not a cure. We welcome changes that could put us back into the thick of things. If we didn't we wouldn't spend so much of our energy trying to change things.

Does that make sense?

 

[Invisible Woman]

I mostly meant the specialists that make up these theories, what people do they see? I don't know how it works in the UK, do you have choice in the specialist you are able to see?

In theory you do have a choice but in practise it's not quite so simple. The GP (primary care doc) is the gateway to specialist services. The GP will usually decide which speciality you'll see & may want to refer you to a specific doctor, the health authority may refuse to fund you seeing a doctor outside your region if they believe there is a doctor with appropriate skills within your region and so on.

Many patients won't want or feel able to have a confrontation with their GP, may be concerned to be seen as a trouble maker as you can then be dropped by the practice. The way practices are set up some.people may only be covered by one practice so being dropped would exclude them from all but emergency treatment.

If a specialist is prepared to back you in getting the benefits you need so you can eat and keep a roof over your head then you may have to be prepared to accept his diagnosis - even if you don't believe it's true.

The specialist who sees you may already have made up their.minds based on any notes they have access to. I have seen specialists who are utterly convinced that my immune system is the cause of my problems. On the other hand I have had the experience described above.

On top of all some doctors have no interest in your opinion, may listen to you out of politeness and then write something completely different in your notes and letter to your GP.

Patients often just don't feel well enough & don't have the cognitive capacity on the day to argue their case.

A lot of patients don't understand and don't want to be involved in the politics, not realizing the full implications. By the time they do, it may too late & they're saddled with medical records that prejudice the minds of most other doctors before they even walk in the door.

It's a very unequal relationship.

 

[JemPD]

A lot of patients don't understand and don't want to be involved in the politics, not realizing the full implications. By the time they do, it may too late & they're saddled with medical records that prejudice the minds of most other doctors before they even walk in the door.

And once this has happened, you end up in the following position...

So, as long as they get the minimum assistance they need to survive they may feel they have no choice but to hang in there.

If a specialist is prepared to back you in getting the benefits you need so you can eat and keep a roof over your head then you may have to be prepared to accept his diagnosis - even if you don't believe it's true.

ETA sorry realised that I just re-arranged your post @Invisible Woman, was foggy forgot to comment. What I was meaning to say was that you're so right... & that once those records are there & being used, & you're being judged through that filter, the only way to survive & get minimal assistance, is to publicly acquiesce, despite what the person may think/feel privately. I've seen that a few times. ​

 

[Jonathan Edwards]

Digging a bit deeper - and it gets murkier:

Deary et al. (2007) dreary paper bases the autopoietic model of CBT for MUS on:

I may be missing something but I cannot see anything here that relates to the meaning of the word 'autopoiesis' which is a speculative term about self-generating living systems associated with people like von Bertalanffy and Varela.

This sounds like more of the pseudo-philosophical bullshit typical of this group of people.

 

[Joan Crawford]

I may be missing something but I cannot see anything here that relates to the meaning of the word 'autopoiesis' which is a speculative term about self-generating living systems associated with people like von Bertalanffy and Varela.

This sounds like more of the pseudo-philosophical bullshit typical of this group of people.

Exactly. I really could not believe what I was reading when I went over the Deary et al (2007) paper. Gob smacking. Completely bizarre.

From wiki: "The autopoietic model, said Rod Swenson,[24] is "miraculously decoupled from the physical world by its progenitors ... (and thus) grounded on a solipsistic foundation that flies in the face of both common sense and scientific knowledge".

 

[Arnie Pye]

The specialist who sees you may already have made up their.minds based on any notes they have access to.

I have poor hearing. I also have blocked ears, intermittently but frequently. Often it feels like I'm underwater. I saw an ENT doctor last year. He told me this feeling of blocked ears was because I knew I was deaf and so my brain "decided" that my ears must be blocked. The GP who referred me to ENT had seen my eardrums were both "sucked in" towards the inside of my head which is a common sign of ear or eustachian tube blockage. I didn't meekly accept what the man said. I was absolutely furious, and made it clear that I rejected his diagnosis, but I doubt it did any good because I'm useless at defending myself in front of doctors. He did seem a bit startled though, so I did make an impression on him for 10 seconds. Woop dee doo.

Luckily for me it didn't prevent me actually getting hearing aids. But I still have intermittently but frequently blocked ears that are very uncomfortable and make my deafness much worse for as long as it lasts (which is usually days or even a couple of weeks before it will clear for no obvious reason I've identified. Then not long after the problem will be back).