Edward Shorter’s view of Chronic Fatigue Syndrome

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.
 
Why such energetic dislike for a specific community? What underlies this seeming disgust? What purpose do these writings serve? What is the ultimate goal? Where is the evidence?
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”.

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.
 
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.
 
Most of what I knew about it was from what I read in the newspapers. Now I'm not saying I was judging other people, I never really gave it much thought.
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.
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.
 
Illness behaviour is largely about biochemistry, immune factors and the like, that change how our body works, and therefore behaves.

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.
 
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.
 
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!
 
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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.

@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.
 
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Illness behaviour is largely about biochemistry, immune factors and the like, that change how our body works, and therefore behaves.
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
 
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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
 
Copied from the Wessely thread

the booklet "Quotable Quotes"
This has just reminded me of something. Many, many years ago I posted a bunch of "bad ME quotes", derived solely from my own reading, to a now-defunct Google (or was it Yahoo? or maybe even Usenet?) group. I think there may be some limited overlap with Williams' quotes, but plenty of "new" ones too.

Posting it in the forlorn hope that it might help to inform some future exploration of the profound epistemic injustice we face.
"From the psychiatrist’s perspective it is parsimonious to ask whether a diagnosis of CFS is ever necessary or appropriate when the symptoms can always be described by a psychiatric diagnosis? This unsatisfactory situation is an artefact of parallel medical and psychiatric diagnostic systems for patients with somatic symptoms unexplained by disease. Consequently whether one uses a ‘medical’ diagnosis of CFS or a ‘psychiatric’ diagnosis of somatoform disorder is merely a matter of choice." (Wessely & Sharpe, NOToP, p1038)

". . . Wessely considers the natural history of chronic fatigue and myalgia syndromes, which are becoming increasingly fashionable. He considers that such disorders as myalgic encephalopathy, post-viral fatigue states and chronic Epstein-Barr virus are the true heirs of neurasthenia - and serve the same social purpose. Both the patients and those making the diagnoses believe that the patient is suffering from a physical illness, so there is an avoidance of guilt and blame despite the fact that about two-thirds of such patients satisfy diagnostic criteria for depressive illness." (Goldberg & Sartorius, PdiGMS p3)

"Just when you thought a stake had been driven through the heart of Chronic Fatigue Syndrome (CFS) (link is external) it comes roaring back, propelled this time by a committee of the Institute of Medicine (part of the National Academy of Sciences). It’s a committee that the CFS patients’ lobby has roped, captured, and hogtied." (Shorter, PT, Feb 19 2015)

"The recognition of PVFS by the Department of Health can be viewed as an attempt to legitimise the sick role, and thus regard the chronic illness behaviour manifested by the patients within the ambit of 'normal' illness behaviour. Furthermore, the patients' illness behaviour is likely to be perpetuated by adhering strictly to the advice given by the powerful self-help group, the 'M.E. Society', which advocates total rest." (Woods & Goldberg, PFS p912)

"CFS came out of that whole brew of toxic beliefs about being tired all the time that arose in the 1970s; it became crystallized with the diagnosis “Chronic Epstein-Barr Virus Infection,” then morphed into Chronic Fatigue Syndrome (Myalgic Encephalomyelitis, or “ME,” in the UK). Finally, the wind went out of this particular sail late in the 1990s when it became apparent to the patients that nobody believed they had a distinct organic disease, as real as mumps, called “CFS.”" (Shorter, PT, Feb 19 2015)

"The description given by a leading gastroenterologist at the Mayo Clinic remains accurate: 'The average doctor will see they are neurotic, and he will often be disgusted with them. Often he sends them away with as little ceremony as possible' (Alvarez, 1935). Thus, attitudes toward psychiatric illness affect both patient and doctor with equally adverse effects on prognosis." (Wessely, PDiGMS/CF&MS, p90)

"There have been no convincing new studies, no breakthrough findings of organicity, nothing. And there never will be." (Shorter, PT, Feb 19 2015)

"In the context of fatigue states, the attribution is usually to an infective agent, especially a virus. This has been true since the discovery of such agents (Rabinbach, 1982), but it is of interest that the "germ theory" of nonspecific illness is gaining popularity among primary care patients at the expense of a decline in the acceptance of personal responsibility for illness (Pill & Stott, 1981). Such attribution conveys certain benefits, irrespective of accuracy. 'The cardinal attribute of terms is external.. There is no malevolence or "maleficium" involved' (Helman, 1978). In other words, there is an avoidance of guilt and blame (unless the germ is sexually transmitted)." (Wessely, PDiGMS/CF&MS, p92)

"Once sanctioned by a doctor, the symptoms are more likely to persist; the persistence of the symptoms is mistaken for confirmation of the diagnosis." (Woods & Goldberg, PFS p911)

"What drives this process? Patients hate having a diagnosis that nobody believes in; they dread the words, “Madame, it’s all in your head.” So, many CFS sufferers moved on to other delusional illness attributions, some involving the environment rather than the mysterious collapse of their “immune systems.”" (Shorter, PT, Feb 19 2015)

"Some patients may adopt safety behaviours that interfere with the experiment of increasing activity. These include walking very slowly, carrying a walking stick, and telling others that they are ill and not to expect too much. If they are to regain their belief in their own ability to function normally, these behaviours need to be dropped." (Sharpe, S&PoCBT p401)

"For many sufferers, ME appears to be an all-consuming political cause and a way of life. It gives purpose to an existence otherwise emptied of meaning. In this respect it resembles the wilder shores of feminism, or racism awareness, more than it resembles a disease." ("Dr Rodney Silver", aka Anthony Daniels/Theodore Dalrymple, The Daily Telegraph, Mar 30 1994)

"CFS lobbyists actually sat on the committee, and in the several public hearings the CFSers appeared in mass to pour out their tales of woe. In its report the committee emphasized that it is “taking into account the clearly expressed views of hundreds of patients and their advocates. Now, committee capture works like this: It is impossible to say to some woebegone victim – who has now become a committee colleague – “We don’t believe that your symptoms are caused by an organic disease.” The public hearings were a circus, with moaning and groaning victims right and left. How do you say to this kind of psychodrama: “We are scientists and insist on evidence other than the tireless repetition of your subjective complaints.”" (Shorter, PT, Feb 19 2015)

"Finally, the medical profession may adversely influence the course of the illness in two ways. . . second, by introducing new diseases. Creating new diagnoses may legitimize much of the above behaviour. For example, 'chronic brucellosis' has been described as a 'spurious disease construct which legitimizes and thereby perpetuates chronic illness behaviour (Eisenberg, 1988). The inevitable result is that the symptoms persist, so the diagnosis is confirmed, and the process continues. The successors to chronic brucellosis that appear in this chapter are inadvertently fulfilling the same role in many patients." (Wessely, PDiGMS/CF&MS p93)

"The tragic element is that becoming involved with a CFS advocacy group is a recipe for lifelong disability, further entombing the patients in their symptoms. Yet it is precisely the advocacy groups that are driving the whole carnival, that have captured this wacky committee of the otherwise august Institute of Medicine. This is the politics of health care at its worst: giving over to noisy advocates the responsibility for defining disease entities. It encourages patients to believe that they have a non-existent illness, and it intimidates physicians from making the correct diagnosis and ensuring that these patients receive proper care rather than Rose of Sharon Oil." (Shorter, PT, Feb 19 2015)

"Finally, attribution to a disease for which the person has no responsibility may function to avoid blame for being ill." (Wessely & Sharpe, ToFSS p292)

(PdiGMS = Psychological Disorders in General Medical Settings; CF&MS = Chronic Fatigue and Myalgia Syndromes; S&PoCBT = Science and Practice of Cognitive Behaviour Therapy; PFS = Postviral Fatigue Syndrome, BMJ47, 1991; ToFSS = Treatment of Functional Somatic Symptoms; PT = Psychology Today; NOToP = New Oxford Textbook of Psychiatry)
 
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Looking at those quotes from Shorter, and remembering other nonsense he's said over the years about ME, he comes across as a very bitter, unhappy and hateful person. I wonder what happened earlier in his life that makes him fixated on one specific disease and on the continual smearing of its sufferers as wacky loons who are actually somehow capable of 'roping, capturing, and hogtying' the IOM, and composing such drivel as 'CFS lobbyists actually sat on the committee, and in the several public hearings the CFSers appeared in mass to pour out their tales of woe. ... The public hearings were a circus, with moaning and groaning victims right and left. How do you say to this kind of psychodrama: “We are scientists and insist on evidence other than the tireless repetition of your subjective complaints.'

And 'The tragic element is that becoming involved with a CFS advocacy group is a recipe for lifelong disability, further entombing the patients in their symptoms. Yet it is precisely the advocacy groups that are driving the whole carnival, that have captured this wacky committee of the otherwise august Institute of Medicine. This is the politics of health care at its worst: giving over to noisy advocates the responsibility for defining disease entities. It encourages patients to believe that they have a non-existent illness'.

He of course is blissfully unaware that quite a few ME patients are themselves scientists and might actually know what they're talking about, as opposed to his invented cliched stereotype that we are all uneducated loons. Meanwhile he writes in a very flowery, whimsical style, rather like the style of a children's story, which doesn't fit with the 'scientific' approach he's trying to depict himself as possessing. Yet, he is not a doctor or a scientist himself, just a history buff. I honestly wonder what made him so obsessed with ME patients; AFAIK, he doesn't have this obsession with other diseases. Does anyone know how his fixation on ME started off??
 
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Edward Shorter 1992

'From Paralysis to Fatigue: A History of Psychosomatic Illness in the Modern Era'

https://books.google.co.uk/books/about/From_Paralysis_to_Fatigue.html?id=MXlrAAAAMAAJ&redir_esc=y



The Amazon link for this book won't post.

'This fascinating history of psychosomatic disorders shows how patients throughout the centuries have produced symptoms in tandem with the cultural shifts of the larger society. Newly popularized diseases such as "chronic fatigue syndrome" and "total allergy syndrome" are only the most recent examples of patients complaining of ailments that express the truths about the culture in which they live.'



An in depth criticism of Shorter's Book 'From Paralysis to Fatigue'

By ME/CFS Skeptic

'From Paralysis to Fatigue: a critical review of Edward Shorter’s view on chronic fatigue syndrome'
POSTED ON FEBRUARY 14, 2021


https://mecfsskeptic.com/historian-edward-shorter-from-paralysis-to-fatigue/

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