Psychosocial chapters from Ciba Foundation Symposium 173

[Lucibee]

I'm currently working my way through this tome, so thought I'd start a thread on it so that anyone else who has read it (and those who haven't) can join in and discuss it here.

The symposium was held at the Ciba Foundation, London, 12-14th of May in 1992.

The publisher's description of the book is that it "documents the latest results and opinions on the causes and possible cures for this disorder. Coverage includes retroviral involvement, immunity, pathophysiology and pharmacological treatment of chronic fatigue syndrome."

But this description is slightly inaccurate given the proponderence of anthropological, psychiatric and psychosocial researchers at the symposium.

I found the discussions very enlightening, as this seems to be the time that the psychosocial academics were beginning to take hold.

It's difficult to know how to summarise the individual chapters and their adjoining discussions, because there are so many assumptions being made by the speakers - and sometimes it is difficult to know exactly where they are coming from (and often, where they are going to).

 

[Lucibee]

To set things off, I found this section in the chapter by Norma Ware (Society, Mind and Body in Chronic Fatigue Syndrome: An Anthropological View) very reminiscent of GETSET Julie...

 

[Medfeb]

Thank you for posting on this. I agree this book is a really useful lens to look at a pivotal point in the history of this disease

The publisher's description of the book is that it "documents the latest results and opinions on the causes and possible cures for this disorder. Coverage includes retroviral involvement, immunity, pathophysiology and pharmacological treatment of chronic fatigue syndrome."

But this description is slightly inaccurate given the proponderence of anthropological, psychiatric and psychosocial researchers at the symposium.

. I agree - the biomedical discussion is overwhelmed by the other researchers.

I found the discussions very enlightening, as this seems to be the time that the psychosocial academics were beginning to take hold.

I think it might have begun to take hold in the late 1980s with some of Wesseley's papers but this seemed to fairly cement it in place. If I remember, its not all that long after this conference - 1995 - that Fukuda and Gantz published management recommendations that included CBT and GET.

What stunned me the most in these proceedings was Sharpe's acknowledgement in his article that there is a lack of theoretical rationale for non-pharmacological treatments. So he just made up the gospel with a wave of the hand - "It is possible to construct a hypothetical model by assuming the aforementioned factors [e.g. reduced activity, illness beliefs, depressed or anxious mood] interact in self-perpetuating vicious circles (Wesseley et al 1989)."

 

[Lucibee]

I agree - the biomedical discussion is overwhelmed by the other researchers.

At the end of the discussion after his paper on the "Clinical presentation of CFS", Komaroff concludes:

"I could sum up by saying that I suppose that I tried to enter a note in favour of the conventional biomedical model, only to then reject that model!"

Those who try to present evidence in favour of it are simply largely ignored in discussions. It's very disheartening.

 

[Lucibee]

There is something so desperately wrong with the way that this has been approached from the outset.
This obsession with "models". It is bizarre and extremely unhelpful.

Science is a set of tools. Not models.

A biomedical approach is a set of tools for exploration. If you can't find answers, you keep looking. You might change perspective, but you never abandon your methods. That would be like discarding your eyes because they can't see in ultraviolet. You might add new ones (tools, not eyes!), but they are always built on what went before.

The biggest mistake is to see it as a face-off between "competing models" - biomedical and psychosocial. It's not. They are not. They are complementary approaches, and they deal with different aspects of the same thing. One provides answers where the other one may not, but you need both to understand fully. And not just "both". There are many other ways of "seeing" that we have yet to discover.

It's a misunderstanding of the scientific method. Scientific models, as such, are there to be tested. To be broken. Those "models" are not neat, packaged, irrefutable explanations. And yet that is what we have been left with. Neat, packaged, irrefutable explanations that are practically useless. Because they don't work!

 

[Sean]

There is something so desperately wrong with the way that this has been approached from the outset.
This obsession with "models". It is bizarre and extremely unhelpful.

Compare and contrast with Sharpe's recent attempts to deny that PACE was based on a 'model'.

 

[arewenearlythereyet]

To set things off, I found this section in the chapter by Norma Ware (Society, Mind and Body in Chronic Fatigue Syndrome: An Athropological View) very reminiscent of GETSET Julie...

View attachment 4130

I haven’t read the book, but from the excerpt immediately the phrase about “mother’s” jumped out. It’s like it was written by somebody a little bit out of touch with how ‘Motherhood’ may have changed a little since the 1950’s? I’m not sure which mothers in the 1990’s were staying up late at night sewing? (Unless it was a hobby for pleasure and to unwind). I think cheap replaceable clothes started happening at the end of the 1970’s?

I guess they could have referenced a large sample from the post war rationing period or probably more likely simply lazily overlaid their own ill conceived and outdated prejudiced views of what a mother should be in their interpretation?

Unfortunately people with these old fashioned views still walk amongst us today ...I think they hide these unrealistic views by lumping them under “traditional family values”, when really they are so far removed from today’s economy that they’re laughable in their naivety.

People like this live in a kind of fantasy land detached from reality and are really not the best people to be doing attitudinal research.

 

[Lucibee]

One of the early chapters is by Peter Manu et al., who looked at clinical epidemiology and aetiological classification in CFS. His prospective study looked at "the medical and psychiatric diagnoses that have an aetiological role in chronic fatigue". Patients were those who presented to their medical centre in Farmington, Connecticut (~400 of them).

His conclusions were as follows:

Most patients with a chief complaint of chronic fatigue suffer from clinical depression, panic disorder, and/or somatization disorder. Therefore, laboratory investigations should be pursued with restraint, and a formal psychiatric evaluation must be performed in all patients with chronic fatigue, regardless of the style of presentation.
As currently defined for research and clinical applications, CFS is usually diagnosed in middle-aged white individuals (mostly women) with a high lifetime prevalence of major depression and somatization disorder and a strong belief in the physical nature of their illness. These findings, and the lack of specific physical and laboratory abnormalities, support a pathogenetic hypothesis that regards CFS as endogenous depression occurring in individuals with a tendency to amplify somatic complaints and explanations. The clarification of the aetiology of CFS will require multidisciplinary research within the framework of long-term studies of carefully stratified cohorts of chronic fatigue patients, and meticulous comparisons with control groups of patients with clearly defined psychiatric conditions.

In the Discussion, Lloyd is skeptical of the results and asks:

"...a crucial issue in your work, and for us all, is how you decide to ‘explain’ a fatigue case on the basis of major depression or of CFS, when the diagnostic criteria overlap so greatly. How do you make that attribution?"
Manu: "I don’t make the attribution. These patients fulfil criteria for the CFS; at the same time, 75% of them fulfil criteria for major depression. You have to decide, for your practice and for your research, what you choose to do with this overlap. I am simply observing it. I happen to think that the condition we call CFS is a very unfortunate combination of symptoms; I don’t think that ‘CFS’ defines the phenomena that we are talking about very well. In my practice, I don’t try to make a distinction, and this is what I tell my patients: ‘you have met the criteria for two entities; one is major depression, one is CFS’."

Despite what he says, it seems he was firmly of the belief that depression is the main cause of chronic fatigue, rather than a sequela (or confounder). I don't think he was looking at 'the wrong patients', as he notes that, "Our patients [believe] that their fatigue has a physical rather than a psychological cause, and more specifically that a viral infection was responsible for their symptom complex". So not only are they depressed, but they are somatizing too.

Throughout the symposium, he is the one who downplays any biological evidence and champions psychosomatic explanations. His paper seems to be strongly influenced by Wessely & Powell's 1989 study on post-viral fatigue.

 

[chrisb]

O chestnut-tree, great rooted blossomer,
Are you the leaf , the blossom or the bole?
O body swayed to music, O brightening glance,
How can we know the dancer from the dance?
W. B. Yeats
'Among school Children'

If that has you puzzled, it had the same effect upon me. Those are the first lines of the paper by Norma C Ware referred to above, and makes clear the problem with this sort of work. Illness is seen as metaphor and allegory. One can just about see the point being made, but not necessarily why it should be made in this manner, in this forum. An analysis available on the internet at http://ireland.wlu.edu/landscape/Group3/sectionfour.htm says

In the final stanza Yeats recognises that although people are the sum of their separate parts, life is an amalgamation of actions. Instead of viewing life in parts, like "the leaf, the blossom or the bole", Yeats argues for one united view of life. Like one's inability to separate" the dancer from the dance" one cannot separate life from death. These two parts are not independent. Instead they are one in the same. No-one has life without death, so one should not view them independently, choosing to takes all areas of life in one wide swath.

It all seems a bit airy-fairy, arty-farty. But this is the way of CFS. Not sure whether syphilis researchers quote Blake's "O rose, thou art sick", or plague researchers "La Peste". Probably not. We are in a special category worthy of artistic interpretation.

In an earlier post on some other thread I alluded to the fact that we tend to see the BPS brigade as a peculiar (sic) British influence and ignore the encouragement which they received from the equally, if not even more, fanatical trans-Atlantic cohort.

 

[Lucibee]

Further on in the discussion, it was noted that not all patients with 'chronic fatigue' had evidence of depression. So, Manu conceded that maybe they should revive the term "neurasthenia" for those patients with idiopathic "non-depressed, non-somatizing chronic fatigue", as Peter White had previously suggested (apparently).

Wessely then brings up the issue of selection bias and reliability - although actually by 'reliability', he is talking about the reliability of patients' recall (ie, recall bias) rather than 'reliability' in a more general sense.

Behan then interjects, and we get this exchange:

Behan: "I have been looking at postviral fatigue syndrome (PFS) for the past 20 years. We have records of thousands of patients admitted as in-patients, and very carefully studied. I laid down the criteria from the beginning that there had to be a viral infection that initiated illness; therefore all the patients had to have no psychiatric illness before the syndrome occurred. If you are looking for the type of fatigue they had, it is a ‘central’ fatigue, similar to that found in Parkinson’s disease and often in multiple sclerosis; it’s also similar to the fatigue of primary Sjögren’s disease, and to a curious disease known as idiopathic cyclic oedema — a hypothalamic disorder.
The other point is that of all the patients I have seen, with regard to psychiatric illness, I have seen them with excessive sleep when PFS begins; they don’t have disturbed sleep initially. Also, I have never seen one such patient with guilt, or lack of ability to enjoy life."

Kleinman: "Psychiatric patients are more heterogeneous than you are suggesting. They can have, and do have, very different kinds of sleep problems. However, you have claimed that CFS gives a different kind of fatigue from psychiatric disorders, and you have compared it to other kinds of fatigue, related to neurological problems. What is characteristic of this kind of fatigue that you feel distinguishes it from the other kinds?"

Behan: "It is a feeling of profound exhaustion, comparable to that of o’nyong-nyong, a viral infection seen in Africa. The slightest exertion is catastrophic for these patients. The ability to move, run or carry out activities when under acute pressure remains, however."

Edwards clearly doesn't like where this is going so starts talking about religion!

"The problem we are faced with as physicians is that our patients have only one language, the language of medicine. With the loss of the authoritative influence of the church on people’s beliefs, there has been a loss of the vocabulary of feelings about many aspects of life which were previously explained in religious terms, including reassurance, relief, or ‘salvation’ (where there has been a major positive change in thought). We shouldn’t always assume that we are dealing only with a medical problem when we consider chronic fatigue; we are dealing with something which is the human condition, for which other explanations were formerly possible; we now have to offer scientifically legitimate explanations, if possible without the need to treat with drugs."

This tendency to steer discussions away from more biomedical topics is characteristic of exchanges throughout the symposium. I get the impression that Behan and others (Tyrrell, Lloyd) in the end just give up.

 

[chrisb]

Behan seems to have been in a minority of almost one. He did sometimes receive support, but the rational types were largely keeping their heads down.

What does seem apparent is the obvious change in tone from the earlier publications on PVFS. The overall feeling one gets is that in the earlier works they were considering a specific illness of which fatigue was one symptom, now they are considering fatigue, wherever and whatever its manifestations. Its as though, when looking for a needle in a haystack, they chose to ignore the haystack and initiate a search of the farm.

I am not sure am able at present to participate much in discussion on this book and its contents. The reference to Ware's paper did however lead me to an interesting discovery. I had deduced from the markings in my copy of the book that it had previously been owned by someone of psychiatric bent concerned with the mind-body dichotomy. I finally got round to googling the name in the front and find it belonged to someone late of Kings, the Maudsley, Edinburgh, and Chief Medical officer for Scotland one of whose papers is cited by Ware and the first page of which ( I haven't been able to get the rest from Sci Hub) could well have been written by Wessely-I wonder if he was an early influence on Wessely and Sharpe.

https://www.sciencedirect.com/science/article/pii/0140673691908146

RE Kendell 1991 Chronic fatigue, viruses and depression.

 

[Kalliope]

Science is a set of tools. Not models.

A biomedical approach is a set of tools for exploration. If you can't find answers, you keep looking. You might change perspective, but you never abandon your methods. That would be like discarding your eyes because they can't see in ultraviolet. You might add new ones (tools, not eyes!), but they are always built on what went before.

I haven't read the thread in detail, but so agree with you here.

I have a feeling that some with a PS/BPS-approach have a tendency to accuse biomedical research for not taking into account that people consists of both body and mind. But that is simply not true!

My impression is that the biomedical approach takes it even more into consideration as there are far longer traditions and stronger awareness for avoiding bias in biomedical research than in psychological/psychosomatic research.

 

[ladycatlover]

Edwards clearly doesn't like where this is going so starts talking about religion!

It's a very long time since I read this book, but I do remember Edwards quoting several verses from the Bible, one of which was "pick up thy bed and walk". He misdiagnosed one of my friends with ME, later following a private MRI (she was desperate) it turned out she had MS. During the time of that misdiagnosis (many years) my friend wasn't able to get DLA, but as soon as diagnosis changed to MS she was given it.

His main interest was muscular dystrophy. I applied for a tech job at his department when I was looking for work after my kids were both at primary school. Luckily I didn't get it!

 

[Medfeb]

There is something so desperately wrong with the way that this has been approached from the outset.....
It's a misunderstanding of the scientific method. Scientific models, as such, are there to be tested. To be broken. Those "models" are not neat, packaged, irrefutable explanations. And yet that is what we have been left with. Neat, packaged, irrefutable explanations that are practically useless. Because they don't work!

"Models are not neat, packaged, irrefutable explanations" Exactly! Models are used to organize thinking so you can test and refine. And they are based on what is already known about the science. But there's no science behind this and they never seriously attempted to test it.

 

[Lucibee]

@ladycatlover - That's really interesting. I'm looking at Edwards' chapter now (on Muscle histopathology and physiology). His conclusion is stark - that because the fatigue is mostly central fatigue, "Psychological/psychiatric factors appear to be of greater importance in this condition".

Behan also noted the predominence of central fatigue, but comes to a completely different conclusion - that there is hypothalamic involvement. After all, central fatigue is a feature in MS and Parkinson's too, and you wouldn't describe them as "psychological" or even "psychiatric" disorders.

Different ways of seeing...

 

[Lucibee]

Going back to Manu's comment about neurasthenia...

White: "Were they [cases of idiopathic fatigue] subcases of psychiatric disorder?"

Manu: "It did not seem so to me. That is why I have suggested, as you have, that we revive ‘neurasthenia’ as a label for this group of chronic idiopathic fatigue patients. It seemed to me that this would be non-depressed, non-somatizing chronic fatigue. If this term were to be accepted, it might make possible the construction of a research paradigm with which to explore the features of these patients. They are very interesting; we don’t see them very often, because they get better."

Given the history of neurasthenia, as a condition connected with neuroticism (as Kendell notes in the Viewpoint cited by @chrisb ), this seems a terrible suggestion, and seems almost entirely designed to create more stigma, more confusion.

Kendell's obit is here: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(03)12522-6/fulltext

 

[Sean]

Given the history of neurasthenia, as a condition connected with neuroticism (as Kendell notes in the Viewpoint cited by @chrisb ), this seems a terrible suggestion, and seems almost entirely designed to create more stigma, more confusion.

And help them avoid having to admit they have no fucking clue what they are talking about.

 

[rvallee]

And help them avoid having to admit they have no fucking clue what they are talking about.

We redid our calculations and we can now pronounce that the end of the world will not be happening last week, as we had inaccurately predicted, but will instead be occur in exactly 28 days, 6 hours, 42 minutes, and 12 seconds with near certainty.

 

[Arvo]

I wonder if he was an early influence on Wessely and Sharpe.
.

The Lancet article of the 19th of January 1991 was a direct influence on Wesseley and Sharpe's dutch co-author and colleague Bleijenberg.
Although it could of course very well be that Bleijenberg got alerted to the article via Wesseley/Sharpe/White, being from the UK.

In fact, Kendell is definitely influenced by Sharpe, Wesseley, White, Manu & co., because the article mentions "post viral fatigue syndrome" from the Lancet article. It was them, in the Oxford criteria (1988), that introduced the idea of the illnes being a "post" thing instead of the result of an ongoing viral infection with CNS disfunction and possible epiphenomena (like persistant virus reactivation) that it was for everyone who seriously researched and tried to treat the disease at the time.
[edited 25/6/21: That the Oxford criteria introduced the idea of ME being a "post"thing is not completely accurate. Although it is fair to say that it was the psychiatrists who kept placing emphasis on it, while a lot of researchers (and even the Oxford criteria) considered it likely to possible that an ongoing infection was at work. The psychiatrists officially tried to include "post" in the name of PIFS, the 'other synderome' in the Oxford criteria.]

Take good care of that book @chrisb, it could be of historical importance. Maybe it could be of interest to Keith Geraghty's research too, if it has more telling highlighted parts: he is currently looking into the origins of the biopsychosocial model and MUS.

I have yet to see Kendells 1991 article used as a direct source in the Nijmegen group's research papers from the early 90s, but that is because I can't access those papers. (That period falls neatly between archived work and online publications becoming regular), but he is mentioned and that Lancet piece quoted quite elaborately in the dutch newspaper article that marked the switch from biomedical to psychosomatic.

Short timeline (see also here in an earlier post) :

- In 1990 Van der Meer is announcing biomedical research into what the CDC had just dubbed "CFS" (although he is handling broader criteria, basically all fatigue, as long as it's severe enough).

- Then, in November 1990 he mentions that they added a medical psychologist, Gijs Bleijenberg, to the team because it was difficult to differentiate between regular fatigue and CFS.

- On the 9th of Februari 1991, a new article about their research appears in newspaper De Volkskrant that suddenly goes all out on McEvedy & Beard, George Beard, Straus (in biomedical association, but by this time he was already full-on in hysteria/neurasthenia mode, if the Nijmegen team was in direct contact with him - which it seems they were- then he gave them his views) and Kendells Lancet piece that was published a little over 2 weeks earlier.

Gyst of the Kendell part: ME or postviral fatigue syndrome are new names, but the two main symptoms, chronic fatigue and muscle ache when the muscles are used, are already well-known. They were described by George Beard more than 100 years ago, who used the term neurasthenia for those symptoms. Kendell considers the phenomena of ME the expressions of the psychiatrically well-described clinical picture depression.

But by far the most interesting bit follows:

Kendell remarks on the side that ME patients don't like to hear that diagnosis, or any other psychiatric diagnosis, "especially not if beforehand it has been suggested to them that they have ME (...) The diagnosis depression implies that their symptoms are imaginary and only exist in their mind. Unfortunately this view, with its crude distinction between 'real' physical diseases and psychiatric illnesses, is shared by the ME patient associations in England and by many doctors.", according to Kendell.

There you have it. So far as I know, up to now (still researching), this is the first time these well-known talking points are used in The Netherlands, the birth of their ad nauseam use. And they all appeared at once in a cluster.

I really wouldn't be surprised if Kendell is the origin of those. He is after all the spewer of other such nonsensical gems like: "In reality, neither mind nor bodies develop illness." and "Pain, the most characteristic feature of so-called bodily illness, is a purely psychological phenomenon."

 

[Arvo]

Osler's Web also has two parts about the Ciba Foundation Symposium, and the contempt they had for CFS (pages 571 and 588).

I'll see if I can get my scanner to work for me to show the content.