Psychosomatic medicine and the psychologising of physical diseases

[Snow Leopard]

https://me-pedia.org/images/7/7a/PACE-cbt-participant-manual.pdf

Autonomic arousal is an automatic physical response of the body to a threatening or stressful situation. We can all remember having butterflies before an exam, an interview or going to the dentist!

When I was young, I thought adults who used these words were just coddling the imagination of children, I didn't realise that some people literally felt like they had bugs in their stomach.

While I have felt a generalised feeling of well, pressure in the gut when feeling nervous before an exam, I have never experienced anything that I would describe as "having butterflies in my stomach".

What is this supposed this feel like? Tingling? A feeling of "pins & needles"?

 

[Jonathan Edwards]

I used this example because the first time I ever heard the word 'psychosomatic' was when watching Sherlock (2010) and Sherlock says that Watson's limp is psychosomatic. (Which it then proves to be, because then later in the episode he leaves his cane behind during a chase scene and doesn't limp.) Of course this is all fictional, but I meant like can something like that happen in real life?

There is no doubt that people have limps that disappear like that. But it is less clear exactly what is meant by psychosomatic and whether it applies.

There is a beggar who asks for money on the North Circular Road at Enfield who limps grossly as he passes the cars with is cup shaking one way and then, when the traffic lights go green and cars move on he walks back fairly normally.He can even run if he wants to.

That is probably best called malingering because he knows perfectly well he is putting it on.

On the other hand years ago I often limped for no apparent reason and people pointed it out to me. Once pointed out I stopped limping. I was not aware that I was limping when I was but realised when told that I had been. I have no idea why I did. I think it may have been a bit like the way people twirl their hair when reading - just a habit.

We also have clear records of soldiers acquiring disabilities that apparently were just 'habits' that made them unfit for service. In the 1940s a number of soldiers developed a condition called camptocormia - which is a severe stoop at the waist that makes the person walk with their body horizontal. It looks ridiculous now but at that time both ankylosing spondylitis and tuberculosis could produce stoops of similar severity. With improved healthcare these very severe stoops have gone and so has camptocormia. (There are very rare cases due to muscle wasting conditions etc.) In more recent times camptocormia is likely to have been replaced by limps or other problems.

The key question is whether conditions such as camptocormia are just malingering like the beggar. Does the soldier know they are putting it on? The term 'psychosomatic' more or less implies that they do not. The implication is that it is more like my limp, which was involuntary.

The bit that I think is completely unproven is the idea that you can acquire symptoms and signs that are driven by some unconscious will to appear ill - usually linked to 'secondary gain'. I think it perfectly possible that something like that happens. However, I am quite sure that the psychiatrists have no understanding of how this might work or how to reliably diagnose it.

 

[Adrian]

That is probably best called malingering because he knows perfectly well he is putting it on.

If he was a business man he would be praised for his effective sales strategy rather than be called a malingerer.

 

[chrisb]

Does the soldier know they are putting it on?

But if he does not know, what does this concept of "mind" add? There are only processes going on within the brain at a physiological level. Those processes may have been conditioned or adaptive, but the addition of "mind" seems otiose. Presumably this is where SW's "dysfunctional cognitions and maladaptive behaviour" fits in. Although I am not entirely convinced that he had not heard the term "cognitive dysfunction" which seemed to be in use at the time and which seems to be an idea of which one can make sense.

There can be little doubt about the understanding of a body of opinion on the matter of malingering with regard to ME. PK Thomas wrote of "simulated" and "volitional" symptoms. Such language leaves no room for doubt.

On the question of the actor and the limp, it seems doubtful that anything can be judged from the ability to overcome the limp in a particular set of circumstances. The limp may, for instance, normally alleviate pain which can be forgotten, or ignored, under the sudden influence of "fight or flight" hormones. He may have regretted his action later-had he not been acting.

 

[Jonathan Edwards]

If he was a business man he would be praised for his effective sales strategy rather than be called a malingerer.

Except that people cotton on!

 

[Jonathan Edwards]

But if he does not know, what does this concept of "mind" add?

I agree entirely. Either psychology is the study of mind in the sense of conscious thought, in which case it does not cover 'conversion' or it is the study of brain processes as a whole. As an empirical account of the latter it could be valid but in the absence of any understanding of mechanism it does not allow extrapolation from normal behaviour to aberrant behaviour.

 

[Mithriel]

When I started going for massage, my therapist said that if you hold a set of muscles a certain way it feels wrong at first but then the body adjusts to it. When you try to relearn the correct posture it will feel wrong even when it is better for you but will correct if you persevere. This is a problem that can be helped by thinking but it is not psychosomatic in the way they use the term.

Now that they are researching and treating ocular surface disease, they have made great strides but keep coming up against faulty settings like this. The eye surface functions are very complicated and rely heavily on the brain keeping everything in the correct homeostasis. It turns out to be very difficult to change the settings the brain uses if they are problematic.

This is a similar class of problem as the first but is completely divorced from any voluntary control. The people who believe in psychosomatic diseases twist the first situation as proof of what they believe and ignore the second.

When I was a kid in second grade, I became terrified my parents would die in a car accident or I'd be abandoned some other way. I had stomach aches every morning before going to school. Was that psychosomatic? Was they caused by anxiety and a stress response? Or was it just a normal sensation I paid more attention to? I have no idea. But the stomach aches were very real to me.

In that situation, your thoughts caused you stress and activated the stress systems in your body. It was that mechanism that caused your symptoms, not your thoughts. CBT may give you ways of reducing your stress and anxiety, but it does not affect your stomach. Individuals may vary in their response to activation of the stress system but what happens is not under voluntary or emotional control. Only whether we have stress or not. Becoming stressed about these responses - terrified of throwing up in public say - still does not make something psychosomatic as it is still not direct.

It is very easy to test if you can believe you have a disease when they are only normal bodily responses. Sit quietly and concentrate on your stomach. Listen to the gurglings and rumbles. Does it resemble any disease state you have experienced?

It may be that you can become aware of your heart beat racing and think it is dangerous but that is not psychosomatic either. It is a simple question you don't know the answer to, like, "Is this mark on my face nothing or a sign of skin cancer?"

Not believing a doctor who tells you your heart is reacting in a completely normal way is not psychosomatic either. It could be health anxiety, disease phobia or a completely justified belief but none of those are psychosomatic either.

 

[Snowdrop]

This refers back a bit on the thread to the stuttering issue.

Found this today:

https://www.bbc.com/future/article/20200922-why-some-people-suffer-from-a-stutter

 

[Hutan]

An interesting article. Just as an aside, I noted this:

Drayna, who worked at the National Institute on Deafness and Other Communication Disorders, already had a longstanding interest in the inheritance of stuttering. His uncle and elder brother stuttered and his twin sons did so as children. But he was reluctant to make a transatlantic journey based on an email and wary that his clinical skills weren’t up to analysing the family’s symptoms. He mentioned the email to current National Institutes of Health director Francis Collins (who was director of the National Human Genome Research Institute at that time), who encouraged him to check it out, so he booked a ticket to Africa. He has also travelled to Pakistan, where the intermarriage of cousins can reveal gene variants linked to genetic disorders in any resulting children.

Scientists are sure there are more stuttering genes to find. Drayna has retired, but Morgan and collaborators are initiating a large-scale study in the hopes of identifying additional genetic contributors in more than 10,000 people.

It looks a bit like a chat to Francis Collins may have made resources available initially. And Australia's NHMRC is funding that large genetic study. Now I know stuttering can be distressing and life-limiting, but I think the impact of ME/CFS is, on average, a great deal worse (and, especially, with Long covid, has substantial implications for economies).

@Simone, perhaps a point useful when lobbying the NHMRC.

 

[Hutan]

Posts about the placebo effect have been moved here:
Placebo effect - discussion

 

[Andy]

This post has been copied and the following discussion have been moved from this thread: BPS attempts at psychologizing #LongCovid

Tweets by Solve ME.

We were disappointed and concerned by a piece published in @PsychToday titled, “When the Body Speaks” by @roygrinker. Despite tens of thousands of published papers demonstrating the biological underpinnings of ME/CFS, some still push the outdated notion of "deconditioning."

Let's be clear: 1. Graded exercise therapy (GET) is shown to cause harm & worsen health outcomes for people with #MECFS 2. The characterization of ME/CFS as a “psychosomatic” illness is a gross mischaracterization & has been disproven by 1000s of peer-reviewed published studies.

3.Those who promote of these incorrect and outdated beliefs cause unnecessary pain and suffering to patients and their families. We urge @PsychToday & @roygrinker to issue a retraction and correction. Read our letter to Mr. Grinker here: ow.ly/8BBQ50CPN4o

 

[Nightsong]

Don't wish to take the thread off-topic, but there's a claim in Solve M.E.'s letter:

For example, Multiple Sclerosis (MS)was once also falsely characterized as a form of psychosomatic deconditioning. But, after the invention of the MRI machine, which provided images of lesions on the brain and spinal cord, the medical community moved away from this incorrect and archaic depiction of MS.

I do not know where this myth started, but I've seen it repeated by a number of pwME for many years. It is simply untrue.

What we now easily recognise as the characteristic demyelinating lesions of multiple sclerosis were characterised in post-mortem cases by Charcot in 1869 ("Histologie de la sclérose en plaques, leçon faite à l'hospice de la Salpêtrière par M. Charcot et recueillie par M. Bourneville").

While it is true that some of the early symptoms of MS, such as limb weakness or loss of dexterity or even ataxic gait might well be attributed to hysteria for many years (especially if the patient has a relapsing-remitting clinical course), focal neurologic signs pointing to an organic diagnosis will eventually supervene.

If a patient has e.g. pyramidal signs such as spasticity, hyperreflexia, or a plantar extensor response (characterised in 1896), those all point away from a psychosomatic diagnosis. So would Lhermitte's sign (characterised in 1917). Optic neuritis, common in MS, is also incompatible with a psychosomatic diagnosis. These should not have eluded a neurologist, even in the pre-MRI era, for most of the 20th century.

There was even a quite famous diary ("Journal of a Disappointed Man") written by the English naturalist Bruce Cummings, writing under the pseudonym of WNP Barbellion, that described his diagnosis of MS, then called disseminated sclerosis, ca. 1915. In a subsequent published diary ("A Last Diary") he details his last two years of life (1918-9). (I've read both; the writing, and the unconscious pathos with which he relates his end, is poignant and beautiful.)

MRI has made early diagnosis of MS possible, but that is all.

[Edit: "Journal", not "Journey"]

 

[Hoopoe]

I do not know where this myth started, but I've seen it repeated by a number of pwME for many years. It is simply untrue.

My neurologist said he has older MS patients who were put into psychiatric wards, so it's definitely true. The exact misdiagnosis given to these patients probably varied. The point is that it was in practice often treated as psychiatric disorder, and I assume, seen as something arising from emotional distress.

Charcot initially believed that these patients were hysterical. He changed his mind when he saw the lesions in the brains of deceased patients. That means the clinical picture of these patients was close enough to whatever people thought hysteria looked like.

After MRI became available, it was discovered that many more patients had MS than previously believed.

PS: I reread and saw that you're right, in that SolveCFS is erroneously writing as if MS was seen as psychosomatic. It wasn't, but many cases (even majority) were given false psychiatric diagnoses.

 

[Jonathan Edwards]

My neurologist said he has older MS patients who were put into psychiatric wards, so it's definitely true. The exact misdiagnosis given to these patients probably varied. The point is that it was treated as psychiatric disorder.

Charcot initially believed that these patients were hysterical. He changed his mind when he saw the lesions in the brains of deceased patients. That means the clinical picture of these patients was close enough to whatever people thought hysteria looked like.

This simply cannot be the case, as @Nightsong points out.

Some people with MS develop dementia as part of the illness.They will have been on psychiatric wards because that is where people with dementia went, whatever the cause. I remember visiting psychiatric wards as a student and people there had all sorts of pathologies. They were on psychiatric wards because that suited their needs - care in the context of mental failure.

The story about Charcot is dubious. Even if Charcot was dumb enough to ascribe spastic paraparesis and over brisk tendon jerks with clonus to hysteria I doubt anybody else did much. The problem is that mild early MS can be quite difficult to diagnose. But establish severe MS which leads to death never was.

The basic point is that this myth is very unhelpful because it allows the BPS people to dismiss ME advocacy organisations as having no idea what they are talking about.

 

[boolybooly]

Don't wish to take the thread off-topic, but there's a claim in Solve M.E.'s letter:


I do not know where this myth started, but I've seen it repeated by a number of pwME for many years. It is simply untrue.

What we now easily recognise as the characteristic demyelinating lesions of multiple sclerosis were characterised in post-mortem cases by Charcot in 1869 ("Histologie de la sclérose en plaques, leçon faite à l'hospice de la Salpêtrière par M. Charcot et recueillie par M. Bourneville").

While it is true that some of the early symptoms of MS, such as limb weakness or loss of dexterity or even ataxic gait might well be attributed to hysteria for many years (especially if the patient has a relapsing-remitting clinical course), focal neurologic signs pointing to an organic diagnosis will eventually supervene.

If a patient has e.g. pyramidal signs such as spasticity, hyperreflexia, or a plantar extensor response (characterised in 1896), those all point away from a psychosomatic diagnosis. So would Lhermitte's sign (characterised in 1917). Optic neuritis, common in MS, is also incompatible with a psychosomatic diagnosis. These should not have eluded a neurologist, even in the pre-MRI era, for most of the 20th century.

There was even a quite famous diary ("Journal of a Disappointed Man") written by the English naturalist Bruce Cummings, writing under the pseudonym of WNP Barbellion, that described his diagnosis of MS, then called disseminated sclerosis, ca. 1915. In a subsequent published diary ("A Last Diary") he details his last two years of life (1918-9). (I've read both; the writing, and the unconscious pathos with which he relates his end, is poignant and beautiful.)

MRI has made early diagnosis of MS possible, but that is all.

[Edit: "Journal", not "Journey"]

That does not stop people claiming it has psychosomatic aspects without any scientific basis for doing so, because they are biased towards an essentially fictional narrative which suits their career interests.

For example, 15 seconds of googling reveals this pitiful departure from empiricism.

the unfulfilled wish of love and bestowal ... is fulfilled directly by the symptoms of multiple scleroses--at a high price. As a conclusion of this article a giving up of the artificial distinction between psychosomatic and somatic diseases is suggested by taking MS as an example.

Psychosomatic aspects of multiple sclerosis 1995.
https://pubmed.ncbi.nlm.nih.gov/7892676/

You couldnt make it up. What this guy Münch is essentially doing in 1995 is projecting the disability created by MS as neediness, he is saying the erosion of the myelin sheath by autoimmune responses is attention seeking.

He is projecting volition onto the physical disability preventing normal activity.

This is blatant projection comparable with medieval witch hunts which causes totally inappropriate patient blaming.

Just because some people know the disease is physical does not mean that other blaggers are not out there spinning fibs and wrecking lives, distorting perceptions of MS and ME patients in the media alike.

 

[Jonathan Edwards]

For example, 15 seconds of googling reveals this pitiful departure from empiricism.

Psychosomatic aspects of multiple sclerosis 1995.
https://pubmed.ncbi.nlm.nih.gov/7892676/

Yes but be fair, this is a fringe article by a crackpot in an unheard of journal in German.

 

[Hoopoe]

Some people with MS develop dementia as part of the illness.They will have been on psychiatric wards because that is where people with dementia went, whatever the cause. I remember visiting psychiatric wards as a student and people there had all sorts of pathologies. They were on psychiatric wards because that suited their needs - care in the context of mental failure.

I suppose it's possible they were admitted for dementia rather than misdiagnosed conversion disorder which was really MS, but am not convinced. The patients my doctor mentioned must have survived a long time if they developed MS before the advent of MRIs. These patients were still alive at the time we spoke. If the psychiatric ward was the right place for them (due to dementia) why didn't they stay there? The way this story was told to me was that as example of how medicine can get it wrong (the implication being that they're making a similar mistake with ME/CFS).

 

[Jonathan Edwards]

These patients were still alive at the time we spoke. If the psychiatric ward was the right place for them (due to dementia) why didn't they stay there? The way this story was told to me was that as example of how medicine can get it wrong (the implication being that they're making a similar mistake with ME/CFS).

People can have MS for fifty years and is intermittent so there may be attacks with confusion and loss of mental function that improve considerably. As I said, some early cases might have been misdiagnosed as hysteria but the key point is the this was not a matter of general policy - it was just a proportion of cases where they got things wrong. Medicine gets practiced badly quite often but in the last fifty years there has been no suggestion in standard medical practice that MS is in any way psychosomatic.

 

[rvallee]

PS: I reread and saw that you're right, in that SolveCFS is erroneously writing as if MS was seen as psychosomatic. It wasn't, but many cases (even majority) were given false psychiatric diagnoses.

That's pretty much the same, though. Most of the difficulty is identifying the cases, a problem amplified by insistance from some that a psychological explanation is simply better. They still missed most of the cases, they still do today, we know delayed diagnoses are common and usually only confirmed by MRI.

Most of those cases would have never been identified back then, not necessarily because people believed it was strictly psychosomatic but rather because a psychological explanation is what they prefer. The end result is the same for the patients, which is basically the only metric that matters. Same thing with us. It doesn't even matter if no one actually truly believes a 100% psychosomatic explanation, the end result is the exact same.

 

[Nightsong]

I'm not suggesting that patients with MS have never been misdiagnosed as psychiatric (in fact, I specifically made the point that some of the very early signs, depending on the presentation, might well be mistaken for CD). Other symptoms of MS (depression, fatigue, emotional lability) might also be mistaken for affective disorder. I'm also sure that such misdiagnoses were much more common in the pre-MRI era.

The point, simply put, is that, as MS progresses beyond its early stages, specific signs pointing to cerebellar or posterior column or pyramidal tract (etc) lesions should emerge. These patterns of signs and symptoms are well known to neurologists and considerably predate the invention of the MRI. Also, even the most blinkered diagnostician should not mistake, say, the progressive myelopathy that can occur in MS for psychiatric disorder.

I'd like to stress that I'm not trying to single out Solve M.E., who do a lot of very good work. I've just seen a number of pwME unknowingly making claims about MS that are not true, and those claims won't go unnoticed by many recipients of these kinds of letters. I'm trying to improve their work, not tear it down for no reason.