Psychosomatic medicine and the psychologising of physical diseases

Sorry but I don't think this is the case. The great majority of cases of MS can be diagnosed clinically. The difficulty is that in clinical terms the key feature that distinguishes the disease is recurrent attacks with remissions. So it is difficult to diagnose MS rather than some other organic brain lesion on the first attack. I am pretty sure that MRI has made only a marginal difference to the estimated prevalence of the disease.

Making some wrong diagnoses is not in any sense pretty much the same as it being standard teaching that a condition is psychosomatic. To be honest, if I was a doctor wanting to make up my mind about the origin of ME, having advocacy groups raising red herrings like things would very strongly push me towards thinking it was all make believe. PWME need to be very aware of that.

 

Yes, I think there has been a misunderstanding. It's correct that MS is not viewed that way and I wrote my first post on this erroneously believing that SolveCFS had argued that before MRI, MS was often misdiagnosed as psychiatric illness (what they actually said was different).

I doubt that my neurologist was telling me anything other than a story of how MS in some of his patients was misdiagnosed as conversion disorder or similar.

 

But to be even fairer Solve ME are not wrong, people really were saying that about MS even after MRI was developed. Saying noone believed it and it was of no consequence would look to me a lot like rose tinted hindsight.

Such crackpottery gave us the PACE trial, which temporarily influenced best practice in treating ME in the UK and on a global scale when it should not have.

My fear is that during the struggle to overturn ignorance, it has more power to distort the perception of truth than it does after reason has prevailed.

 

I disagree. The PACE trial came from the received wisdom. ME really has been seen as mostly psychosomatic. MS was never in any way comparable. Solve were clearly suggesting an analogy and there is none. Those who claimed that MS was psychosomatic after 1950 were akin to Gwyneth Paltrow and Goop or Mexican stem cell cowboys. To link this to PACE is completely out of context.

 

I actually have some concerns about the material Solve put out. This came up because we discussed my providing a Q and A session, which hopefully we will do.

The statement quoted: 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. is simply misinformation and presumably has been writtenqby someone with no medical training or general knowledge. Every medical student knows it is untrue.

Solve have done a great job raising awareness and supporting research but I do worry about trying to provide medical educational material when as far as I can see nobody at Solve has medical training. Sources like Health Rising should not be quoted because they are full of misleading material based on trawling and repeating of a lot of mostly rather poor quality science. Most charities that do this involve a medical adviser.They may not be up to scratch but they are unlikely to allow through stuff that everyone knows is not the case.

 

SolveCFS appears to be misunderstanding what others have said. If I remember correctly, Nancy Klimas has said that MS was frequently misdiagnosed as psychiatric before MRIs.

 

That would not surprise me.

 

I dont think so, I see PACE as the same phenomenon as Münch in a different context.

I dont agree PACE was received wisdom at all, it was a snowjob designed to manufacture received wisdom.

Received wisdom was what I was told by my GP in 1982 about how nasty recurrent EBV could be, how I had to rest and gradually build recovery, not rush it and precipitate a relapse. As I see it this kind of received wisdom subsequently took a leave of absence under the influence of BPS blaggers like the PACE gang who were responding to the political imperatives of the 80s and later.

I think what SolveME are getting at is there is a pattern where some opportunists claim poorly understood diseases are psychosomatic while they can get away with it.

Eventually the scientific establishment makes up its mind and beats miscreants into the fringes but while scientists are making up their minds miscreants can wreak havoc and in PACE they did just that and took center stage. IMHO !

 

MS pre scan was considered a predominantly male disease- women were written off as hysterical.
There is an inbuilt gender bias in many areas of medicine that many will be familiar with.

 

I don't think that was ever considered true in Britain. I've gone back to a very early medical text, the famous System of Medicine (1911), edited by Sir Clifford Allbutt, and the increased female prevalence was known back then:

Other relevant quotes from SoM:

I don't doubt it!

I once saw a pwME tweet at one of the PACE authors, saying something like "but MS was always regarded as psychosomatic", which is why this particular claim stuck with me. I'm always open to correction if I make errors (as I frequently do, especially post-ME) and to hear others' opinions. Regret that a post genuinely made in good faith was seen as so unhelpful.

 

The problem with received wisdom is that it is what the most dominant voices say. Trainee doctors are presented with the idea that women are at risk for mass hysteria and that functional disorders are common because the people who hold those views teach them. They become givens that are not questioned because of the authority behind them.

ME was a collection of symptoms, a syndrome, which happened after epidemic diseases. If the voices who claimed it was really deconditioning had not been listened to blindly - a few moments history taking would have shown patients were not all deconditioned, after all Peter Behan did experiments using athletes who were still much fitter than usual but could no longer do what they used to - then received knowledge would not be that ME is not a real disease.

I first began attending an MS therapy centre in 1994. Soon after that it became known that MRIs could definitively diagnose the disease and some people wondered how much it would cost to get a private test done.

At that time, MS was basically diagnosed as Possibly MS, Probably MS and Definitely MS. The patient was not told until the third but in practice they found out when they saw a locum or it was mentioned by mistake. This caused a lot of distress as people did not know what was wrong with them for years in many cases.

I am sure, with what I know now, that there was great fear that someone would be told they had MS when it was really hysteria. Despite a great outcry from patients the practice only really changed when MRIs became common.

 

yes she says it was called 'hysterical paralysis' in Unrest (not sure if those are her exact words).

This article includes a little about the history, but also a first hand report of the authors experience in getting her MS diagnosis.

https://multiplesclerosis.net/living-with-ms/portable-history-ms/

 

To be even fairer, fringe crackpots in Germany should not be underestimated. They are running this place:

https://www.klinikum.uni-heidelberg...internal-medicine-and-psychosomatics/about-us

They have an experienced team of about 60 doctors, psychologists and social workers who devote themselves to the patients. My GP tried to trick me into going there so that they could devote themselves to me.

 

And seeing as psychomatic illness does not exist, they must be misdiagnosing an awful lot of sufferers of something else to keep their devoted team of 60 busy. Long may I be spared their devotions.

 

Reading this and... you really can fool some people all of the time. Not even a question anymore, even in circumstances that should make that impossible it definitely happens.

Zero difference between this and an astrology department at NASA. Amazing.

 

The facts which reinforce this perspective for me, which I expect you are aware of but I will reiterate because others may be interested, relate to the way the US government felt it was necessary to draft a few bills from 1996 onwards to ensure that mental health got insurance parity with physical health.

Before that it was open season and the insurance companies were getting away with a few thousand dollars for CBT to cover a mental condition for a time limit of a couple of years compared to hundreds of thousands of dollars for physical conditions and their lifelong treatment and care.

https://en.wikipedia.org/wiki/Mental_Health_Parity_Act

In the 1980s the influence of the US financial system was considerable and in the ascendant. As a graduate coming out of Oxford I knew where the money was as many of my well informed friends were talking about it and the atmosphere in the city was febrile resembling a "frat party". All kinds of shenanigins went unchecked and the credit crunch was one eventual result but there were other repercussions.

All of a sudden from my point of view, doctors forgot the received wisdom about post viral illness which I had received as a younger man regarding EBV and appeared to completely forget the idea that viruses could be recurrent. I was told to my face by a relatively young medic "that doesnt happen" when I told him what was happening to me. The illogic of that statement in a sense advertised that he was under constraints not to admit that what I was saying was true, that the system he was a part of, every bit as much as I was, would no longer countenance that kind of condition.

When I think about the reasons for that, it seems obvious and credible that the US medical health insurance system was influencing received wisdom there and also abroad, including the UK, denying forms of chronic physical illness existed due to the vast cost differences for the insurer and their adversarial approach to claimants and the legal means of settling disputes.

It seems to me this is why BPS took off as a research option for a select few around that time. Proponents of mental health diagnoses for physical conditions were given funds to promote their ideas regarding BPS which were in turn given prominence by publication so they could be used to contend against claimants with a broad range of chronic conditions in US courts. BPS is pseudo scientific legal sophistry used to suppress and supplant the received wisdom which was espoused earlier by medics like Ramsay.

That is the source of the snowjob which manifested as the PACE trial. That is also why we dont want an insurer lead health system in the UK, ever, as the conflict of interest is insurmountable.

 

'Private Eye' piece on Unum, the American insurance company, and income protection cover, 11 November 2011 | The ME Association

Is Labour abolishing illness? (newstatesman.com)

 

https://www.s4me.info/threads/government-and-insurance-companies-establishing-the-bps-model.2319/

 

A number of posts have been moved from
Guardian: George Monbiot 'Apparently just by talking about it, I’m super-spreading long Covid', April 2021 - Discusses ME/CFS and PACE


I had an interesting and long conversation with a journalist a couple of days ago. She asked me if I was really saying that I did not think that psychology influenced any illness. That needs a lot of unpacking as we know but I decided that the answer to her question in her terms was YES, that is my position. I was really saying that I did not think that 'psychological factors' affect illness. It surprised even me to say that but if I go through the illnesses - cancer, rheumatoid, diabetes, schizophrenia (yes schizophrenia), stroke, chronic bronchitis... the answer is always no. Asthma could perhaps be an exception but I am pretty doubtful.

The problem I see is that the reports of recovery that Lucibee rightly says are real lived experience are irrelevant. Either the person was getting better anyway or what has changed is an unhelpful belief. And yes I do think people have unhelpful beliefs - people like Paul Garner and a whole lot of people I know whose lives are limited by believing silly things about what affects what.

I agree with Sean that the PACE trial would have picked up real causation of recovery if it was there. The lived experience of getting better is NOT a lived experience of being made better. That is an interpretation, not an experience.

But I also agree with E12 that it may be extremely difficult to distinguish people with PEM from people who, because they believe they have PEM because they believe they have a specific disease called ME, report the same symptom. Which is why criteria are so useless - they are not going to discriminate between symptoms and belief. If anything one would predict that people with inappropriate beliefs about having a specific illness are likely to fit the criteria (if subjective) better than those who actually have it.

The crux of my debate with the journalist is that 'psychology' is the study of thoughts - of events we are aware of. Its bogus application to 'unconscious thoughts' i.e. brain processes that we are not aware of, by Freud was a pseudoscientific disaster. A psychological component to an illness is a thought the person is aware of that actually produces new symptoms. Pretty much all of the plausible situations I can think of fall to either one or other side of that. There is malingering. There is belief in having an illness that you do not have or does not exist, and so on. But if people think they are trying to get better, then they are, and the PWME I meet on this forum are.

In other words: physician/psychiatrist manqué, heal thyself.

 

A thought provoking way of putting things.

I suspect, perhaps because of the nature of human consciousness, that many people, without even realising it, have at least some beliefs that thoughts alone can cause things to happen in the material world. It is in effect a belief in magic, that some how things will happen because we want them too.

It is part of this magical thinking to believe that changing thoughts or really wanting to be better will make people better, even though in most situations it is as rational as trying to think yourself taller.