Michael Sharpe: Mind, Medicine and Morals: A Tale of Two Illnesses (2019) BMJ blog - and published responses

Beginning to wonder even more about this illness/disease dichotomy. My book opened itself at a page in the paper by Arthur Cott of McMaster.

Illness is behaviour

he asserts with confidence. Is it? What could that mean? If it is , then what is it doing the behaving? They generally say that illness is the subjective experience. Is a subjective experience a behaviour? No doubt there are cells behaving, in the ways that cells will behave, to create that experience. That does not seem to be what is meant, but who knows?

EDIT he continues: From a behavioural point of view, therefore, illness is the response or effect of which disease is only one possible determinant...

 

Some of the views in that book seem very strange to me. Several authors discuss illness behaviour as if reporting of a symptom is the same as experiencing the symptom. Hence they assume that if there is a reduction in symptom reporting to a physician, that there must necessarily be a reduction in illness.

Yet one of the chapters (Robbins and Kirmayer) tried to study the relationship between cognitive styles, symptom reporting and somatisation. Instead of finding a relationship between cognitive styles and somatisation (eg cognitions causing symptoms), they only found a relationship between cognitive styles and symptom reporting. In other words, they found that symptom reporting on self-report questionnaires is highly susceptible to cognitive biases.

 

But Robbins and Kirmayer ended up saying, "With more precise definitions of patient presentation, such measurement procedures may permit detailed study of the cognitive contributions to somatisation and psychologisation".

It maybe that we are not sufficiently familiar with Karl Jasper's General Psychopathology. Apparently it was almost required reading for Shepherd's students. A bit more phenomenology is what we need. I may be too old to start on that.

I agree the book seems a mish-mash of bad ideas. It is quite revealing to see the titles of the papers of those who later attended the CIBA conference and who shaped the future of CFS..

Kleinman delivered "Illness meanings and illness behaviour".

Mechanic gave both "Illness behaviour: an overview" and "The socialisation of introspection and illness behaviour", the latter with Steve Hansell.

Katon's talk was on "Depression: Pattern of medical utilisation and somatisation in primary care", given along with Berg, Robins and Risse.

No wonder they lost interest in biology.

 

It was a long time ago, but I read about sickness behaviour being researched in biology. They were talking about the what caused the change in behaviour when animals became infected or wounded. Mammals often retreat to an isolated place for instance. Fatigue was postulated as a response to infection which conserved energy and kept the animal in a single safe place.

I wonder if this idea was adopted then changed to suit a psychological agenda.

 

I thought this Reddit /r/covidlonghaulers thread was interesting to this whole notion of "it's not about the symptoms" and people not wanting to go back to their old life and triteness like that, that "illness without disease" is this pause button people give themselves because they hated their life, or whatever.

Spoiler: it's 100% about the symptoms and even people who said their life used to be boring and sad would go back to it in a heartbeat if only the damn symptoms would go away. Hell, people even mention they miss mowing the lawn and to anyone who has ever had lawnmowing duty, this is serious (half-kidding here but seriously mowing the lawn sucks and people are looking at the idea with fondness and that's just weird).

The people who keep promoting the idea that it isn't about the symptoms and that we have other reasons to go see the big powerful doctors who will hand-guide us back to safety are complete hacks and engaged in delusional hubristic fantasies about their role in society.

No, I will not "learn to live with it"

 

Where did " secondary gains " originate from ?
Another theory with little evidence framed as fact?

 

Was it part of the "sick role" introduced by Parsons in the early 1950's? I'm fairly sure it was referred to as unoriginal in the early 60's.

 

Goes back way further I think. As far as Freud.

 

A critical paper [eta] by Fishbain attributes 1ary and 2ary "gain" to Freud:
https://www.jpain.org/article/S1058-9139(05)80274-8/pdf

Interesting that wikipedia thinks that a psychoanalytic theory is an established medical entity, just referencing DSM:
https://en.wikipedia.org/wiki/Primary_and_secondary_gain

 

Oh wow that's even dumber that I expected. Somehow the definition of primary gain and secondary are the same. They're worded slightly differently but mean the exact same thing, neither amounting to any gain whatsoever by anyone. Meanwhile the tertiary gain is basically abusing the patient. Which... uh... OK.

But this:

Haha no shit. Or even to the patient. They will even say so. Repeatedly. Makes no difference because nobody listens to a damn thing we say.

People are weird in general but this is an entire level above. I believe the proper technical term here is what is known as "batshit insane".

 

I see now where I went wrong. I thougt that people wishing to persuade patients that their symptoms were not psychological in origin would not overtly use the concepts of Freud. Ah, well...

 

The insanity of the concept of "secondary gains" in ME/CFS exposes a fundamental lack of understanding of seriousness of the disease. No one would consciously or unconsciously exchange the devastating effects of ME/CFS for the imagined "benefits" of the "sick role." Why would so many patients spend so much time and money attempting to find a cure which would end these so-called "benefits"? It's not for the "attention" of doctors, many of whom are dismissive. I simply gave up on doctors after a year or two. If I had to see one for something else, I just wouldn't mention my ME/CFS symptoms. If I was in it for "secondary gain," I was really bad at it.


On a lighter note:

I would guess that the popular conception of "secondary gains" (though not by that name) comes from the 1939 play (and 1942 movie) "The Man Who Came to Dinner."

Basically, an injured man uses his convalescence as an opportunity to run roughshod over the lives of the occupants of the house where his accident occurred.

It's actually kind of a Christmas movie. The general concept has been adapted for use in countless TV sitcoms. It's worth being aware of this "trope" because it's embedded in the culture as an example of a patient using his "illness" to his benefit.

Here's a condensed version of the main character's insults to those he subordinates.

https://www.youtube.com/watch?v=ipRBBDnM1Fo

 

I think it goes back earlier still. Malingering has been suspected in the military throughout history, and still gets a court martial in the US. Insurance is another driver:

According to the Texas Department of Insurance, fraud that includes malingering costs the US insurance industry approximately $150 billion each year.[6][18] Other non-industry sources report it may be as low as $5.4 billion, suggesting that insurance companies are over-inflating the problem to divert more law enforcement towards health insurance fraud.[19]
https://en.wikipedia.org/wiki/Malingering#Society_and_culture​

Insurers and governments have obviously operated on that principle with ME. The paper by Fishbain that I linked above usefully turns the concept on its head at one point: making a diagnosis of secondary gains in a poorly understood and untreatable disease in fact provides secondary gains to the medics making it.

 

Malingering is usually associated with things like back pain where it is easy to fake symptoms. They really think we are stupid if they believe we would chose to lie by inventing symptoms that are not visible and which vary all the time.

I also think they are confusing cause and effect again which is endemic in psychology. Even if someone is obviously using illness to manipulate people that is just as likely to be making the best of a bad situation as choosing to be ill in the first place.

I think of a women I knew years ago who used the fact she was a single parent to absolve herself of all responsibilities. But she did not get a divorce so she could do that.

 

On second thought, "The Man Who Came to Dinner" may not be such a great example of secondary gains in that it relies on the "patient" being able to hold others responsible for his medical condition. What the patient "gains" is control over other people due to their fear of legal/financial repercussions. It's still an exploitation of "illness," but it relies on the exploitation of fear or guilt rather than of sympathy.

[On youtube there's a very funny episode of The Mary Tyler Moore Show called "You Sometimes Hurt the One You Hate," where the premise relies on mostly on guilt - and the limits of guilt.]

 

I fell off my bike about 10 years ago. An MRI scan showed that I had a "bone bruise" in my wrist. The doctor told me that "bone bruises" weren't visible until MRIs, so before then I would have been accused of malingering.

 

Speaking of secondary gain, did anyone else read "The Comforts of Madness" when it came out in the late 80s?

https://en.wikipedia.org/wiki/The_Comforts_of_Madness_(novel)

Quite the thing at the time, the 1988 Whitbread book of the year (UK).

It was written by a psychiatric nurse, and is based on a patient with severe catatonia. The novel completely psychologises this person's severe and crippling catatonia. It tries to make a case that the catatonia was initially a response to a messed up childhood which culminated in the death of our character's father (following a long paralysing illness). At this point the young protagonist decides to retreat to his bed and from the world by never moving again.

In the novel, the character gets treated pretty poorly by both by psychiatrists and various other professionals, all with the aim of shaking him out of this state, (I remember once he is left outside overnight in a wheelchair, in an attempt to "bring him to his senses"). In the novel, our character's determination not to move or respond never waivers, despite all these challenges. At the end of the novel, we hear his thoughts just before his (early) death, at which time his muscles have all atrophied and his hips have become permanently slightly flexed, and he has no regrets.

At the time, the book was praised for the way it challenged current psychiatric efforts to "retrain" the mentally ill. But to me, it was actually more horrifying than all of that, because it tried to make a case that someone could actually choose catatonia for secondary gain (mainly avoidance of the pain of life). How ridiculous! How on earth could the punishment-reward ratio of catatonia ever add up, no matter what it is you're trying to avoid or how troubled your childhood was?

At least that was fiction, but people have made similar claims about real people. This paper describes a real patient who presented with "conversion disorder", and claims that the sickness role allowed the patient rebuild her relationship with her family and ex-lover, and also to avoid work-related stress. The woman died shortly afterwards and was found on autopsy to have Creutzfeldt-Jakob disease.

 

Sounds similar to "pervasive refusal syndrome". Perhaps placing children face down in swimming pools was the fashionable treatment of 1988.

 

When I read this, I thought, well, the only explanation for retreating into a voluntary catatonic state (if that's even possible) would be madness.

Then I remembered that this is basically what happens at the end of Alfred Hitchcock's "Psycho." Norman becomes his mother, but his mother is dead and can't move - so she won't let Norman move, because, by not moving, Norman's dead mother "knows" she can't be suspected of the murders.

https://www.youtube.com/watch?v=dYDxxHrlmUg