ME/CFS SKeptic: A new blog series on the dark history of psychosomatic medicine

Susan Sontag's two books Illness as Metaphor and AIDS as metaphor are slim and brilliant.

Smile or Die by Barbara E is really good.

I've packed up a lot of my books for moving house but I'll have time today to see if I can find any more suggestions I was struck when I was researching for my doctorate how little critical literature their was especially as so much harm had been done to many patients with numerous conditions.

 

Psychosomatic medicine seems to be a continuation of the ancient belief that illness is a punishment from God for sinning and moral weakness.

At some point God and the punishment was removed from the explanatory model. What we consider sins (undesirable behaviour) and moral weakness also changed.

The cure was to confess to one's immoral behaviour and try to become a better person.

Back when Freud was popular, emotional and sexual repression was the sin and considered to be a cause of illness. After the 60's, this narrative stopped being attractive and new sins were found and declared to be the cause of illness.

Sedentary behaviour and anxiety are now one of the big sins.

 

https://twitter.com/user/status/1372586234736996355


Introduction
In this first of many blog posts on the dark history of psychosomatic medicine, we take a look at multiple sclerosis (MS). Although we found little evidence that the disease itself was once viewed as psychosomatic (except for some marginal papers), there are strong indications that many female MS patients were incorrectly labeled with hysteria in the past. Today, MS symptoms are still frequently dismissed as psychosomatic before patients receive the correct diagnosis. Lastly, we examine a psychosomatic model of MS fatigue that bears many resemblances to the contested cognitive-behavioral model of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Full text: https://mecfsskeptic.com/the-dark-psychosomatic-history-of-multiple-sclerosis/

 

Another great blog post.

It reminds me of an English lady I met about 15 years ago.

She was living in Africa in the 80s and started experiencing weird symptoms. Eventually she saw a young African doctor who had finished training in London a couple of years before. He told her he thought she had MS, that they didn't really have the facilities or a healthcare system in Africa that was advanced enough & recommended she & her husband consider returning to the UK.

They & their young family uprooted themselves and returned to the UK. She registered with her local GP who ran some routine blood tests and then told her there was nothing physically wrong with her.

He referred her to a psychiatrist who prescribed anti depressants. Unfortunately, whether it was the dose or type or whatever, her mood was left very flat and bleak. She was left like a robot without emotions.

She was a pianist but could no longer play because she literally felt no connection or reaction to.music at all. She couldn't even connect with her children.

Well over a decade passed before she was finally diagnosed with MS. She was already quite badly affected and finally she was weaned off the anti depressants.

As far as she was concerned it was all too late. She had no close relationships, even with her own children because she had felt nothing for them & was very distant with them in the years they were growing up. Her husband had only stuck around out of a sense of duty.

She didn't feel angry or bitter about MS, she was angry and bitter about the "treatment" that robbed her of the reasonable decade or so she might otherwise have had, that robbed her of everything important in her life.

 

I may be running up to the line of comment moderation here, but I think this points out the necessity of having a somewhat decentralized healthcare system. If it’s the national provider and it’s policies or nothing, things like this will happen. No bureaucracy will account for the vast range of individuals health issues, except perhaps under a category labeled “untreatable”.

Every large bureaucracy eventually becomes devoted to itself and not its mission. It may take 20 years or 200 but the principle works with as high a degree of certainty as anything in human affairs can have.

This doesn’t mean that an unregulated & totally unsubsidized healthcare marketplace is a viable alternative, the nature of people and communication will create a maelstrom out of that.

 

https://twitter.com/user/status/1375164170635739138


https://twitter.com/user/status/1375164343051034629


Made me wonder if someone is writing a diary of what life with ME/CFS is like in the early 21st century.

Could be an interesting project.

 

I'm being stupid here. Were the woman's loss of emotions due to the MS or the anti-depressants? I know almost nothing about MS.

 

The Journal of a Disappointed Man wasn't Barbellion's only published diary: his diary of his final year of life (1918-1919) was published posthumously as "A Last Diary", and is also well worth a read; I find it difficult to read books on screen, but I think you can find free PDF copies of both on archive.org. They were written with a palpable depth of feeling and evoke great pathos, although they do incline to the melancholic. There is also an even earlier diarised description of MS than Barbellion's: that of Augustus d'Este; although the full diary is unpublished, some excerpts from it relevant to his case of MS were.

Other lesser-known published diaries written through the prism of long-term illness include that of Alice James (diagnosed variously with neurasthenia, hysteria and numerous other dubious diagnoses) and, to a much lesser extent, Marie Bashkirtseff (tuberculosis).

 

The Journal of a Disappointed Man is also on Librivox.

https://librivox.org/search/?q=the journal of a disappointed man&search_form=advanced

 

Entirely down to the drugs they insisted that she take.

By the time I met her she needed a fair bit of help and had been weaned off the anti depressants. She tried to connect to connect with her now more or less adult children but she had been emotionally absent for too long and they simply didn't have any emotional connection with her. They would turn to their father, never her.

 

I think it would be interesting to work out what factors are at play that make medical staff want to adopt the psychosomatic dustbin option so readily. Is it because they are in a position of power; is it triage mentality gone mad? Perhaps it is conditioning from their training that it is their role to sit in judgement of others? Or perhaps it is a warped sense on wanting to help and a lack of acceptance of failure?

The psychologists and theorists only get airtime and credence because clinicians are so willing to ‘believe’ these things. It seems a fundamental flaw in our medical care system and this goes from top to bottom.

I learnt from a very early age that discrimination is rife....from the receptionist all the way through to the consultant. I remember as a child sitting in a neurology department waiting area and watching how the nurses and doctors talked to the other patients and observing to my mother “why are they talking to the man in that way?” It was obvious to a child of 7 that there was a difference to how adults normally talk to other adults. I believe the man had Parkinson’s but I’m not sure.

 

Another aspect that this lady with MS mentioned that's also very relevant to us -

by the time she got the correct diagnosis and needed to learn what to do to best manage her symptoms and get the most out of life she had lost all.of her confidence.

Having spent so many years being told her symptoms, while possibly real to her, were not indicative of anything and so should be discounted it was very difficult to start suddenly being allowed to be aware of them and actively managing her illness.

She had lost all of her confidence in herself as a person. She felt she was a failure in her career, in her relationships, in herself as a human being partly because of the nature of what she was diagnosed with initially but mainly because she failed to improve with treatment.

Then, having no reserves left to fall back on, finally she's told she has MS. Her confidence and self belief completely undermined she's got to learn to readjust to this new reality.

If that's not causing someone harm, I really don't know what is.

 

New blog post on the dark psychosomatic history of asthma:

https://twitter.com/user/status/1375445322680385537


In this blog post, we delve into the psychosomatic history of asthma. Long considered an archetypal psychosomatic condition, asthma was said to reflect a suppressed cry for the mother’s help or attention. Patients with asthma were described as neurotic, anxious, and infantile and great emphasis was placed on a smothering relationship with a mother figure. Some experts proposed an intervention called “parentectomy” where children were taken away from their home environment and separated from the emotional factors that were held responsible for their asthmatic episodes. Psychosomatic explanations of asthma remained popular deep into the 20th century but receded as biomedical understanding increased and patients and their families challenged popular myths surrounding the illness.

...

 

Thanks!

We're starting with illnesses where psychosomatic theories were once quite popular or influential, but where the dominant view has strongly shifted over the years. For example asthma, epilepsy, colitis, autism etc.

Migraine however seems to be an example, unfortunately, where psychosomatic theories are still quite popular and influential. We plan to do investigate these later. But reading tips and suggestions are always welcome!

 

Absolutely. And totally denied by the perpetrators.

 

Really enjoyed (if that is the right word) the latest Blog on asthma. Looking forward to more in the series.

 

Meanwhile, in Germany....

(Google translate) :
Psychosomatic Department from "Parents School" -- Tears in the "Mäuseburg"

Neurodermatitis, asthma, allergies: The Gelsenkirchen Children's and Youth Clinic promised a cure, "at least in 87 percent of the cases". Dubious, say some experts and parents -- others stand behind the clinic. The story of a research.

By Armin Himmelrath and Timo Grampes

From the article:

https://translate.google.com/translate?sl=auto&tl=en&u=https://www.deutschlandfunkkultur.de/psychosomatik-abteilung-aus-elternschule-traenen-in-der.3991.de.html?dram:article_id=490801

Original version in German:
https://www.deutschlandfunkkultur.d...en-in-der.3991.de.html?dram:article_id=490801