You think ME is bad - try having a "Psychogenic movement disorder"!

[jimells]

Since you have been diagnosed with POTS how come you aren't getting looked after according to your needs? Surely this is separate from the depression stuff. Can you see another doc?.

Yes, it's the $40,000 question - why don't doctors believe their patients and why can't patients get treatments to minimize symptoms while researchers are working out exactly what the illness is and how to treat it? The simple answer seems to be, "They hate us".

But that answer leads me to another more basic question: if doctors dislike patients so much, why don't they find a different line of work?

 

[worldbackwards]

I think this is the appropriate place: maxwhd keeps picking this stuff up on Twitter. This is our pal Mark Edwards, lately seen doing far too much at the CMRC:

Functional Neurological Disorder is under researched. Few have taken the opportunity to explore the unknown where they can discover an exciting untapped area of the brain…. or is it the mind? Functional symptoms are truly where the two become one.

Oh do fuck off.
http://fndhope.org/living-fnd/physicians/

 

[worldbackwards]

I like to imagine him saying "...or is it the mind?" like a TV psychic and doing a mysterious hand gesture at the same time.

 

[Cheshire]

Sorry, I seem to have given you the wrong link. But I just checked and the video has been made private now. Might have been a few negative comments or something.

This master-piece is available again thanks to mxwhd here:

 

[Sean]

These idiots still have not learned the difference between a tentative hypothesis and an experimentally tested theory.

 

[Jeckylberry]

Smug git...It's nauseating! Revolting!! They also haven't learned that they are perpetuating the mind-body divide by suggesting some psychological reason for it! It's just a more elaborate, updated version of the same old conversion disorder shit! His example about getting stressed is just plain insulting. Fatigue is not medically unexplained is it? It's a symptom of many diseases from heart problems to viruses. Some causes have to be researched more to explain them. If things don't function at optimum, the result is fatigue to the degree by which the system is affected. How can this be 'unexplained'? How is a symptom an interpretative error leading to behaviour?? Now I know why my neurologist shrugged and said CFS is just another functional disorder. If it is then everything is!! You have to see this in terms of all illnesses just as faith healers do or it ends up with some people with illnesses or groups of symptoms being singled out for rude treatment.

 

[chipmunk1]

http://fndhope.org/fnd-guide/diagnosis/misdiagnosed/

From a medical perspective, a delay in correct diagnosis is primarily regarded as a cause of delaying appropriate treatment, unnecessarily worsening the disease state. In the day-to-day lives of patients and their families, however, the same delays in diagnosis can lead to numerous equally deleterious consequences, which include but are not limited to medical consequences, such as physical consequences, psychological consequences, cognitive consequences and death.

• Roughly 22 million patients with autoimmune disease experience denial of care before accurate diagnosis. .[7]

• Women, under age 55, are 7 times more likely than men to be mistakenly sent home from the ER in the midst of a heart attack. Once sent home they are twice as likely to die. [8] [9]

• Most rare disease patients spend an average of 7 years in search of diagnosis [10], and during those years most mistakenly match criteria for psychogenic diagnoses [11]. There are 30 million rare disease patients in the US [12] and roughly another 30 million in Europe, according to Eurodis, battling with this problem. These figures make rare disease far from being rare.[13]
• According to Eurodis 41% of rare disease patients in Europe are misdiagnosed at least once.[13]
• 
  Misdiagnosing or focusing solely on functional symptoms is a negligent decision on any physician’s part because the outcome can in its most extreme case be a deadly decision.

 

[Cheshire]

I certainly am masochist, but I watched Bolton's video again. Very VERY upseting. But I think some of the things he said need to be written down.
He is so arogant, dismissive and I've rarely seen someone trivialize MUS (he includes CFS in them) symptoms that way... trying to boost his self-esteem by depreciating patients. This is pathetic.

This list comes from research in general practise, and gives some of the symptoms that most commonly patients presents with that remain medically unexplained, starting with muscle and join pain, low back pain... If you look down the list, these are often common human experiences. I, for example, would have experienced most of these in the last couple of weeks. What's different between me and a patient though is that I haven't chosen to present those problems to a health professional. And that begins to give us a little bit of a clue about what might be going on.

 

[A.B.]

This list comes from research in general practise, and gives some of the symptoms that most commonly patients presents with that remain medically unexplained, starting with muscle and join pain, low back pain... If you look down the list, these are often common human experiences. I, for example, would have experienced most of these in the last couple of weeks. What's different between me and a patient though is that I haven't chosen to present those problems to a health professional. And that begins to give us a little bit of a clue about what might be going on.

I agree, this explains a lot. These theories must be popular among doctors that can't handle the reality of senseless suffering and their own inability to help and therefore need to flee into some fantasy world where these things don't exist.

 

[Cheshire]

Some other wonderfull quotes:

How parents handle illness in families can also be important. I remember as a child if I suggested to my mother that I thought I should have a day off school because I felt unwell, she would simply give me my bag and push me out the door. You can see how that might influence the way I deal with physical symptoms in later life.

Illness beliefs can be important. The way we think about our bodies, and what we understand about them. For time, I was a junior doctor working in infectious diseases. And I knew that if there was a television program about meningitis on television one week, the next week it wold be very difficult because the emergency department would be full with patients presenting with headaches ad a concern that they might have meningitis.

Chronic fatigue syndrome is often triggered by significant viral illness such as influenza, hepatitis, or glandular fever. But the symptoms of chronic fatigue syndrome persists even when the immunological reaction is over and the infection has been cleared by the body.

Maintaining factors
Iatrogenic factors

In my practice, I have met a number of patients who have MUS and when I ask them what they do when the symptoms come on, they describe taking a medication that would otherwise be used to treat a physical illness. What message does that give if somebody is prescribed a medication for physical illness when it's been concluded that the symptoms have no underlying physical pathology? For many people, it simply reinforces their idea that there must be something important going on that people aren't telling them.

Quite funny given that this guy just lectured his audience about avoiding dualistic thinking at the beguinning of his speech.

Hypocondria as the cause of symptoms:

For example, I may be travelling here today to film this talk. I'm already somewhat late. That get me anxious. I then find myself in a traffic jam on the way to the hospital. That gets me stressed. My sympathetic nervous system gets going and I'm pumping adrenalin into the body. I'm getting closed to the hospital but then I get cut up at the set of traffic lights that delays me even more. That gets me particularly angry so my heart is beating harder and faster now and I'm starting to feel a little bit breathless. I start to worry because I know I’ve got a strong family history of heart disease. At that point as I sit in the cue gasping for breath I phone home and my dearest says "don't forget that your grandfather died at an early age of a heart attack. Do you think you should carry on with that filming? Shouldn’t you see somebody about this?" So instead I interpret my symptoms as something unimportant, I take myself to the emergency department. They check me ou and say "Dr Bolton your hart is perfectly fit, your blood pressure is fine" they try to reassure me but then they say, "BTW we booked you to see a cardiologist in a few weeks to undertake an exercise stress test”. That leads me simply thinking that there must something wrong that they don't want to tell me about and my MUS keeps running.

 

[Jeckylberry]

Stop it @Cheshire! You're making me sick! Hats off to you, though for steeling yourself to do this writing as it is very important to actually see what he says word for word. It is absolutely repugnant.

He's a hell of a way from being holistic in his approach. His examples are rubbish. For every trivial anecdote there are thousands more examples of real misdiagnosis and resulting poor treatment. In @chipmunk1 's post, women under 55 having heart attacks are 7 times more likely than men to be discharged from the ER. (I'd suggest that this would also apply to mentally disabled people, children and marginalised groups or just anyone who doesn't behave like your average white male). This suggests there is something wrong with either the way the patient presents to the medicos or the way the medicos interpret her descriptions of her experience of the illness. When a young woman presents with palpitations do they think panic attack first? Whereas if a bricklayers apprentice of the same age comes in with the same symptoms do they think more on the physical side? For some reason he is more authentic??? Is it because the woman is more expressive? More descriptive, perhaps? Do the medicos feel more powerful when treating her than him and therefore just blow off her symptoms as hysterical like a child not wanting to go to school. Or is it just that they have grown up with the social custom of seeing men as objective and rational and women as mysterious and emotional. Historically women are viewed as emotional and less capable of being 'objective'. If you believe a person is not rational then you are less likely to take them seriously. In reality everything is an emotional response and everything is subjective. Whether you give something a number or a name you are engaging in a relationship with it and what value you assign to it will determine how you relate to it. From the figures @chipmunk1 quotes, clearly although male and female patient lives may be valued equally, what female patients say and how they describe their symptoms is valued 7 times less. There is no vacuum somewhere where doctors walk, impartial to assumption, conceit and ego. No hallowed ground where they treat everyone the same according to symptoms. Although the pursuit of this is admirable the assumption that they are actually doing this is what is making jerks like Bolton think they're legit.

 

[Cheshire]

Warning: this is not a joke, this is not The Onion or anything.

Last article (?) of Alan Carson and Jon Stone.
Explaining functional disorders in the neurology clinic: a photo story
Alan Carson, Alexander Lehn, Lea Ludwig, Jon Stone

I must confess I'm a bit speachless. I really don't know what to think of it (nothing positive for sure). First question that comes to mind is: are these guys OK? I mean, what happened, really.

There are 8 strips of this kind.

I can't say which word qualifies it best: contemptuous, patronising, simplistic, ridiculous, pathetic?

To see the whole opus:
https://www.researchgate.net/public...sorders_in_the_neurology_clinic_A_photo_story

 

[Woolie]

What a find, Cheshire!

Instead of philosophically bereft Cartesian discussions about whether the symptoms are neurological or psychological, in the brain or in the mind, try to move the discussion on to whether the symptoms are potentially reversible or potentially irreversible.

... and then refer for psychotherapy, of course.

Some other gems:

And that old chestnut:

 

[Cheshire]

What a find, Cheshire!

Isn't it?

The way they fantasise what patients think is very telling.

 

[Woolie]

And to top it all off, that happy ending! But in reality, prognosis for these guys is poor. Most people continue to suffer for rest of their lives.

Lots of nice "white lies" in here too - its not all in your head (although they expressly propose that it is), its a software not a hardware problem, etc.

These guys re trying to understand and be helpful, but what they lack is a decent theory that specifies the biological mechanisms that govern these disorders. So all they've got is loose "psychological" stuff, and pretty much nowhere to go with that.

And less face it, even if they are "psychological", there still must be biological mechanisms governing their occurrence, so gotta understand them first whatever the case.

 

[PeterPositive]

Looks like a good advertisement campaign to sell some more psychotherapy. You know... the poor psychologist needs to put food on the table too.

 

[PeterPositive]

... and how cool is the neurologist in strip #1, who is thinking "Oh god, here's another one of those!" even before having heard anything from the patient? Jeez, welcome to the "No s**t is given" clinic

 

[chipmunk1]

... and how cool is the neurologist in strip #1, who is thinking "Oh god, here's another one of those!" even before having heard anything from the patient?

That is the way they really think. They had a hard night or day and simply don't have the motivation/energy to deal with minor or poorly understood problems so they label them psychological to get rid of the patient.

They want us to shut up so that they have less work to do. We need to accept that we are confused idiots who don't know how to manage their stress/emotions so that they don't need to feel incompetent.

 

[chipmunk1]

Lots of nice "white lies" in here too - its not all in your head (although they expressly propose that it is), its a software not a hardware problem, etc.

the psychologist says: Tackling unhelpful thoughts that may be involved in maintaining your symptoms can be very powerful.

Then they don't understand why their patients run away.

 

[Scarecrow]

I must confess I'm a bit speachless. I really don't know what to think of it (nothing positive for sure). First question that comes to mind is: are these guys OK? I mean, what happened, really.

I'd be more impressed with the neurologist, physiotherapist and psychologist if this was a documentary about many real patients and not a cartoon about one imaginary one.


p.s. I think I may have read too much Jackie when I was younger but didn't they forgot to show the receptionist looking dreamily at the neurologist?