From Paralysis to Fatigue: a critical review of Edward Shorter’s view on chronic fatigue syndrome - ME/CFS skeptic

How I became a historian of psychiatry: Edward Shorter – h-madness (historypsychiatry.com)

This article about Shorter gives some information about him. It appears that he went to Toronto shortly after obtaining his PhD in 1967. After publishing his book Womens' Bodies in 1982 he undertook two years of medical studies. Presumably it was after that that he commenced reseearch for From Paralysis to Fatigue.

There does however seem to be some doubt as to when he took the medical training. This university profile suggests that it was whilst writing Women's Bodies. Dr. Edward Shorter, Ph.D., F.R.S.C. | history.med.utoronto.ca not after it. One might hope that a historian could provide a consistent history.

One wonders how great a level of expertise might be obtained in two years training.

 

If the speculation that Shorter started his research on psychosomatic illness in 1985, how serendipitous that the 2nd International Conference on Illness Bhaviour should have taken place in Toronto in August !985. The eager young, or not so young, medical student would have been able to hear such presentations as:

McHugh and Vallis on Operationalisation of the Biopsychosocial Model,
Laurence KIrmayer on Somatisation and the Social Constructionof Illess Experience,
Arthur Kleinman on Illness meanings and illness behaviour,
Steve Hansell and David Mechanic on The Socialisation of Introspection and Illness Behavior
James Robbins and Laurence Kirmayer on Illness Cognition, Symptom Reporting and Somatisation in Family Medicine
George Brown on Etiological Studies and Illness Behaviour
Leon Eisenberg on Are Psychiatric Disorders "Real"?

The pleasure must have been overwhelming.

 

This is exactly what strikes me about him and also various others such as Rod Liddle, etc - why this obsessive fixation on ME/CFS? Why the apparently overwhelming need to belittle and insult - they just seem unable to control themselves? I'm sure it speaks volumes about their own psychological issues, not ours, but I can't imagine what their issues could be.

 

Illness behaviour. I always had a strong dislike for this term. You’re not ill, you’re just behaving like an ill person. To what end? I have lost literally everything thanks to my “illness behaviour”.

 

Yes, why would millions risk losing their jobs, careers, homes, families, friends, finances, health care, and all they hold dear? Why would they continue to cling to this way of being having lost so much? Why do they do this, if they could just snap their fingers and turn their lives around? Because they can't. They are actually suffering from a serious, debilitating physical disease.

 

I had the experience of my own mother suggesting I might have ME, back in the early 1980s. Based on what I had read in the news media I dismissed it. I did not have the same thing. This was years before I had seen the media fail and fail again, and learned to be sceptical. Its part of why I went from someone with strong authoritarian leanings to someone highly sceptical. Authoritative sources are wrong a lot. Even respectable news media outlets are wrong way too often. Given the problem with media churning this has got even worse. Flawed reporting gets spread far and wide.

ME is hard to wrap our thoughts around. CFS is even harder because the misinformation is probably even more rampant. So I have sympathy, to a point, to those who don't understand the issues. Heck, I am still learning about these things, decades later. I have much less sympathy for medical professionals who claim to be experts in the area but who display a deep misunderstanding or ignorance or personal bias on the condition/s in question, and not just on the ME/CFS spectrum.

I didn't understand a lot for many years. The impressions we often get, the medical advice, conflict with good understanding of the disease, and it takes us time to come to terms with it, and we are living it on a daily basis. For example, in about 1989 or so I was told by a rehab doctor not to exercise. I ignored them. My bad. So much has changed since then of course.

So an historian who claims to be an expert, but who displays a deep failure in knowledge on the science, is not someone I have any sympathy for. They have their hypotheses, but they are counterfactual and rationally flawed, and harmful to society.

 

Illness behaviour is still a technically correct term, referring to changes in behaviour due to illness, as the term suggests. However like many other issues it has been co-opted by factions within psychiatry and grossly misused. Its now to the point where it probably does need to be retired as a term, and something that is technically more specific needs to be created.

Illness behaviour is largely about biochemistry, immune factors and the like, that change how our body works, and therefore behaves. Most of that is not volitional. The brain is not immune and has some innate responses to these. You don't change such immune factors much by just talking. In most cases I bet you don't change them at all. A small number of factors might change in a slight way due to decreased perception of stress, but that is about it. I suspect it is always or nearly always clinically insignificant.

However if stress reduction is the goal then challenging and abusing patients is not going in the right direction. There are reasons why we occasionally hear of PTSD in ME/CFS patients.

 

Nope, that would be sickness behaviour. That’s the term used in psychiatry for what you are describing. Illness behaviour, on the other hand, is used specifically in BPS and is meant to denote somatisation or secondary gains/faking.

 

Thanks for the clarification.

 

I would wager most of us, if not all of us can recount incidents where loved ones, and others close to us have verbally cut us for our illness, or our belief we are sick. For our drastic change in life-style. For our unavailability to them.

I for one have experienced this many, many times. An observer might say, just throw off the sickness mantle and you won't have to endure those nasty comments anymore. However, despite this abuse, pwME cannot because this is a serious, chronic, biomedical disease.

 

In my opinion, and based in part on my own observations, we do a lot of pretending about our illness. Society and our own expectations lead many of us to downplay symptoms, pretend we are fine when we are not, and generally mask how sick we are, just so we will be expected. Heck, for some years I am not sure we all recognize how sick we are, we don't want to believe it. I think my first blog on Phoenix Rising dealt with this, called Masks. We sometimes have to mask our illness to survive, but we cannot have progress in advocacy from that position.

edited to add - should have said accepted not expected!

 

@alex3619

You are so right! I don't pretend I'm sick, I pretend I'm well. And, I downplay my symptoms. If I am factual about my plethora of symptoms, I often have to put up with denigrating remarks.

ETA: It's painful either choice I make. Be true to myself, and get yelled at, laughed at, literally told I'm crazy by my nearest and dearest. Or, downplay how awful my health is, in order that I'm treated with some semblance of respect. All the while knowing I'm not helping in this way with advocacy. However, I will say in my defence, I have done a fair bit of advocacy in other ways.

 

I've seen a lot of discussions of "sickness behaviour" that slide into the psychosomatic as well. The concept is commonly misused to justify all sorts of claims about the "function" of behaving like a sick person - and not just its evolutionary function, but also its "function for the individual".

And we all know what they really mean by "function for the individual": secondary gain.

I find the concept of "sickness behaviour" dangerous at the best of times, because it is so often used to imply that there's a space between the physiological mechanisms responsible for illness and the way the person behaves. I don't think that's helpful, and can be too easily misused to support psychological treatments.

 

ETA: Sorry I edited out half my post when trying to fix a typo. Stupid brain fog. I will try to reconstruct the first paragraphs

I was 26 when I was stuck with my illness. At the time I was working in the highly demanding television and film industry in Los Angeles and things were going well.

My timing was perfect, as there was a sea change in the technologies being used in editing and post production and I had skills that were in demand. 100 hour weeks were common, but I was having a blast. 1984.

Then I got hit hard by a horrible virus, out of the blue. I was knocked out and in bed for 9 months. Devastated. When I finally crawled out of bed and returned to working I entirely hid my illness, which initially did not have a recognized name (beyond yuppie flu) in this country. I did not dare being openly sick. It was a deep dark secret.

Only my most intimate friends knew the truth and they were sworn to secrecy. I maintained this secret life for decades.

****

I carry a certain sense of shame that I hid the illness. I did it to survive. And you are correct that "we cannot have progress in advocacy from that position." That is certainly true.

For many years I never met a single person working in Hollywood who openly admitted to having CFS (as it eventually came to be known). It would have been a career killing move, I think.

I still remember the first time I had a conversation with someone who made a comment that made me suspect the truth. I asked this person flat out if they had chronic fatigue syndrome and a look of absolute panic spread over this person's face. As if they had been exposed, so I quickly said "me too." We bonded immediately.

It is a terrible thing to feel so afraid that one can't be authentic in one's life without a sense one will lose it all.

I have pretty complex feelings about hiding for so long. But I wore a mask, for sure.

Bill

 

I think most of us do early on. I had a partial mask for a long time, admitting CFS but not saying how bad it was. Something amazing happened though . . . people came up to me and said they had CFS too, but they followed that with "please don't tell anyone".

 

I try to comfort myself by saying we did not even know that this illness was. AIDS was actively killing people who i knew in my circle and having a "mystery illness" that I wasn't sure wasn't contagious didn't make being open easy. The film industry is a harsh mistress. Careers can disappear over less. I can come up will all sorts of excuses.

We do what we need to do to survive sometimes.

But I can't escape some sense of guilt that I stayed in the shadows. That's the way it was.

I try to be open now. It still doesn't come easily. Quite the opposite in fact.

Bill