ME/CFS Research (Dr Amolak Bansal) and Management (Dr Charles Shepherd)

Snowdrop

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From wikipedia: https://en.wikipedia.org/wiki/Semantic_change
This discusses a different kind of change but it does indicate that words do change over time. One can indeed start to use something that is more appropriate because the word previously used is in some way deficient or has been used to support a denigrating position--in this case sickness behaviour was a perfectly fine way to describe symptoms until someone co-opted the term to suggest that it could be used as descriptive of false illness belief behaviour undermining the term and making it's use ambiguous.

See also: http://www.poynter.org/2009/change-...ds-demands-care-in-the-use-of-language/99499/
 

Wolfiness

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Whilst I share your dislike of the term 'sickness behaviour' and agree that this term could easily be interpreted as meaning that it refers to s psychological response to infection rather than a physical one we do need to engage with this model of symptom production (i.e. infection leading to a persistently upregulated cytokine mediated immune system response) as this could turn out to be a key (and possibly treatable) component in the perpetuation of ME/CFS

My worry is that lethargy and feeling rotten is not binding - it doesn't absolutely stop you doing something, it just severely disinclines you to it, so we're back to motivation and behaviour, albeit on a bodily level, that your body doesn't want you to move. Prof. White has authored papers on the cytokine response in CFS and is still apparently backing CBT/GET to shift it, so it doesn't get us very far. And it's missing the key point of exertion intolerance.

I remember having the flu as a small child and marvelling at the feeling of in theory being able to move but in practice not being able to summon up the will, and telling my mum something like "I want to move but I can't," and her explaining, "Yes, that's because you're tired." My experience with ME isn't like that. What tires and disables me isn't lethargy - I virtually never get it and when I do I can choose, with great effort and at great cost, to ignore it. What disables me is the muscular metabolism catastrophe, which is much easier to choose to ignore but which I can't choose to recover from. So for me the cytokine-mediated lethargy doesn't seem to pertain to me unless the cytokine processes that cause it also cause mitochondrial dysfunction, which of course they may.
 
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Valentijn

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Frankly, only to the scientifically illiterate.
Which is 99% of the population. Often including the people we live with, work with, are friends with, and depend upon for support.

And there's no need to claim someone is ignorant if they object to use of a term, when the cause for that objection is clearly based on the widespread ignorance regarding that term instead. It's nasty and unproductive.
 

Chrisb

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One of the main architects of the sickness role behaviour model relating to the body's natural (cytokine mediated) response to acute infection is Profesor Robert Dantzer

I think this clearly encapsulates the problem in this debate. If this language is to be used, people who believe that they are being accused of acting out a part, fulfilling others' expectations, can hardly be blamed for their interpretation. There may be ambiguity in the term "sickness behaviour"; there appears to be little in "sickness role behaviour"
 

charles shepherd

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I think this clearly encapsulates the problem in this debate. If this language is to be used, people who believe that they are being accused of acting out a part, fulfilling others' expectations, can hardly be blamed for their interpretation. There may be ambiguity in the term "sickness behaviour"; there appears to be little in "sickness role behaviour"

Yes, Sickness ROLE behaviour is moving right into into the psychosocial model of causation and management:

Parsons defined the "sick role" as having four chief characteristics.

First, the sick person is freed or exempt from carrying out normal social roles. The more severe the illness, the more one is freed from normal social roles. Everyone in society experiences this; for example, a minor chest cold "allows" one to be excused from small obligations such as attending a social gathering. By contrast, a major heart attack "allows" considerable time away from work and social obligations.

Second, people in the sick role are not directly responsible for their plight.

Third, the sick person needs to try to get well. The sick role is regarded as a temporary stage of deviance that should not be prolonged if at all possible.

Finally, in the sick role the sick person or patient must seek competent help and cooperate with medical care to get well.

This conceptual schema implies many reciprocal relations between the sick person (the patient), and the healer (the physician). Thus the function of the physician is one of social control.

http://www.encyclopedia.com/doc/1G2-3404000445.html
 

Hutan

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I didn't think I felt very strongly about the term 'sickness behaviour' until I read the following quote posted by @Snow Leopard on another thread.

Mansel Aylward said:
Biopsychosocial models
None of the above models on its own succeeds in taking account of the range of factors which can influence the nature and extent of physical or psychological dysfunction. They all fail in one way or another to acknowledge attitudes and beliefs, psychological distress, social, and cultural influences, and personal experiences brought to greater or lesser extent by an individual person to the display of functional limitations and restrictions in its social context. A better understanding of chronic low back pain and disability, and management, is best provided by a
biopsychosocial model which considers all the physical, psychological, and social factors which may be involved (Engel 1977; Waddell 1987; Mendelson, Chapter 17). Many patients with medically unexplained symptoms do not have psychiatric disorders; these may be the result of minor pathology, physiological perceptions, and other factors including previous experience of illness (Nimnuan et al. 2000).

According to the attractive biopsychosocial model developed byWaddell (1998) and Main and Spanswick (2000), an initiating physical problem or perception, when filtered through the affected individual’s attitudes, beliefs, coping strategies, cultural perspectives, and social context, may be experienced as magnified or amplified and predispose to illness behaviour. Thus, the development and maintenance of chronic pain and fatigue, chronic disability and, indeed, long term incapacity for work, particularly in the context of low back pain and chronic fatigue states, rests more on psychological and psychosocial influences than on the original benign and mild forms of physical or mental impairments.

Waddell (1998) further argues that disability is not static but a dynamic process which evolves through distinct phases over time: the relevant model of disability may be different at various stages of this process. Waddell (2002) argues that the medical model may well be the most appropriate for most patients in the immediate aftermath of a physical injury, acute illness or disease. But within a few short weeks psychosocial issues start to predominate, and following the lapse of 1 or 2 years the initiating physical or psychological dysfunction will bear little, if any, relevance to the manifest illness behaviour. Psychosocial factors, expectations, and behaviours are thus very different at the acute, sub-acute, and chronic stages in the development of chronic disability. Capacity for work deteriorates and the chances of effective rehabilitation and return to work recede. Social Security statistics also demonstrate that some 40 per cent of new claimants for incapacity benefits return to work within 6 months, but those on benefit at 6 months have a very strong likelihood of remaining on benefit for years. Of those beginning a claim in 2000 around 30 per cent will be on benefit for at least 4 years (Aylward 2002).

Illness behaviour itself is not considered to be a formal diagnosis but is a melange of an affected individual’s observable activities, conduct and performance to express, and to transmit to others, his/her self-perception or interpretation of an altered state of health. Nor should it be defined in terms of a continuum of pathology. The manifestations of illness behaviours according to this model do not necessarily provide information about the initiating biomedical stimulus whether this be pain, fatigue or psychological distress. Nonetheless, in keeping with the traditional medical model, the biopsychosocial model recognizes that psychological and behavioural change are secondary to pain, fatigue or some other distressing complaint that most frequently has its origins in musculoskeletal and neurophysiological processes. As pointed out by Sharpe and Carson (2001), biopsychosocial models offer the potential (and indeed a danger) for an explanation and re-medicalization of unexplained symptoms around the notion of a functional disturbance of the nervous system. A paradigm shift indeed, or just a return to some of the competing theories offered to explain neurastheria in the nineteenth century (Aylward 1998)?

Is there any place for volition and or intentionality within the constraints of biopsychosocial models of disability? (See Halligan et al., Chapter 1, and Malle, Chapter 6.) For the most part, the assumption is that ‘patients cannot help how they react to pain’. Emotions are outside our conscious control and most illness behaviour is involuntary. Our professional role is not to sit in judgement but to understand the problem with compassion to provide the best possible management for each patient’ (Waddell 1998). This view reflects the philosophy that humans are not freely determined creatures: thought, behaviour, actions, and apparent free will are determined by factors beyond the individual’s control. And yet, if evolutionary psychology defines the human as the moral animal endowed with a capacity to make value-driven choices and an intentional approach to life then the emergence of a moral sense in human consciousness drives us away from genetically programmed behaviour, instinctive responses and the overriding effect of emotion. No doubt, we are creatures who are in conflict with ourselves; creatures in whom the life-force has started observing itself (Holloway 2001). Frankl (1963) called this our ‘ultimate freedom’—the potential freedom to exercise individual choice about one’s attitudes, behaviours, and responses to a given situation (see Halligan et al., Chapter 1).

While there are ignorant people out there who think that expressing illness or sickness behaviour is a moral choice and while those people have considerable influence over the treatment of vulnerable chronically ill people, I think we should be very careful in how we use the phrase 'sickness behaviour'. There is so much scope for murky thinking and manipulation.

i.e. sure we see sickness behaviour demonstrated in rats, but we are superior humans and we have a choice as to whether we indulge in such behaviour. So you, you lazy person with chronic fatigue, choosing to lie around on your sofa, get up and go to work!
 
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Chrisb

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First, the sick person is freed or exempt from carrying out normal social roles. The more severe the illness, the more one is freed from normal social roles.

It is interesting to see how the interpretation changes with minor adjustments to the language.

If one were to say "First, the capacity of the sick person to undertake normal social roles becomes restricted. The more severe the illness, the more one is restricted in the performance of normal social roles" it is unlikely that strong objection would be voiced.

As is often the case, it is the use of language with latent pejorative implications which reveals the attitude.

Perhaps the worst part of this is that it seems to indicate that those expressing such views have never taken a proper patient history and learned of the hardships endured by patients in trying not to be freed or exempt from carrying out normal social roles.
 

Scarecrow

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I didn't think I felt very strongly about the term 'sickness behaviour' until I read the following quote posted by @Snow Leopard on another thread.

While there are ignorant people out there who think that expressing illness or sickness behaviour is a moral choice and while those people have considerable influence over the treatment of vulnerable chronically ill people, I think we should be very careful in how we use the phrase 'sickness behaviour'. There is so much scope for murky thinking and manipulation.

i.e. sure we see sickness behaviour demonstrated in rats, but we are superior humans and we have a choice as to whether we indulge in such behaviour. So you, you lazy person with chronic fatigue, choosing to lie around on your sofa, get up and go to work!
Illness behaviour and sickness behaviour are not the same.

It's telling that Mansel Aylward was talking about illness behaviour. The content was repugnant but at least he was using the appropriate term.
 

Hip

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And there's no need to claim someone is ignorant if they object to use of a term, when the cause for that objection is clearly based on the widespread ignorance regarding that term instead.

I agreed early on in this conversation that there may be a potential risk of misinterpretation of the term sickness behavior, so this is not in dispute. It's the details that are in dispute. I think the dangers are much exaggerated here.

In reality, I doubt there will be much of problem, because in media articles of ME/CFS very rarely get into discussing the pathophysiology (at the most they might mention the viral connection), so you will probably never see the term sickness behavior employed in the articles intended for the general public.

You are only likely to see this term used in scientific discussions, such as those on this forum, which are probably quite impenetrable to the non-scientifically literate section of the general public anyway.

And I think that statements and concerns expressed about the term "sickness behavior" in this thread are off the mark. For example, the idea that use of this term somehow opens the door for psychologists is silly. Science does not work like that; science does operate at a shallow "crossword puzzle" level of word connotations. The general public might, but science does not.
 

duncan

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Well, the disembodied concept of Science aside, Science is practiced by scientists. We can refine that further - relative to "sickness behavior" - to researchers and clinicians (and psychs).

Researchers will be siloed, but even they are not immune to peripheral influences. It's even worse with clinicians. Clinicians - if they review research at all - will most likely simply skim abstracts. "Behavior" is already loaded with psych implications. We are speaking connotations at the clinical level. If that loaded "behavior" term is seen in any release about ME/CFS, the implications can be very real. Clinicians are interested in symptoms and diagnosis and treatment. You toss "behavior' into that equation, and the result is different.

So doctors that ME/CFS patients go to could read sickness behavior, and the suggestion is made, the damage is done.

This is not silly. This is real world, with real world implications to patients. IGNORING it is silly.

I still cannot figure out why any ME/CFS patient would adopt such a cavalier attitude about indulging wording with blatantly psych overtones.
 

Hip

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So doctors that ME/CFS patients go to could read sickness behavior, and the suggestion is made, the damage is done.

Any scientist reading the term "sickness behavior" in a paper abstract will either: (1) already know what it means, in which case there is no problem; (2) not know what it means, and so look it up, in which case, again, there is no problem.

Scientists don't work on the basis of what a term "suggests" to them; they look up the precise meaning. You are confusing science with poetry.
 

duncan

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Scientists are people, too, subject to the same influences and flaws as the rest. Some of them, I suspect, even like poetry.

How many clinicians think ME/CFS is a psych condition? How many will look up what "sickness behavior" means, even if it isn't being manipulated in a psych abstract?

Why feed that misconception when there is absolutely no need to? Or, if it makes you feel better, why feed the risk?

Look, it's not even like everyone subscribes to the concept of "sickness behavior". You're giving it far more popularity than it really enjoys. But even so: it's dangerous because there is an element that will gladly misuse it, and there is most definitely an unwitting population of doctors that will misconstrue.

We cannot afford it. We should not tolerate it. We certainly should not contribute to it.
 

Hip

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why feed the risk?

Because you have not come up with any solution to this, apart from the Humpty-Dumptyfication of terms. When you have an intelligent solution, I will consider following it.
 

duncan

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At least you are willing to admit we need a solution to the problem posed by this "sickness behavior" nonsense.

I will try to come up with an intelligent solution to help.

Oh! Here's one: Don't indulge this utter crap.
 

Wolfiness

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Because you have not come up with any solution to this, apart from the Humpty-Dumptyfication of terms. When you have an intelligent solution, I will consider following it.

But Hip, isn't what you call Humpty-Dumptyfication (I would spell it Dumptification) in fact semiotics and the very serious business of who gets to decide what to call something? Different groups in society campaign to get language changed all the time because they believe the meaning or etymology or connotations of the existing term to be perjorative or misleading. It happens in medicine too. We don't have consumptives or dipsomaniacs or manic depressives or The Spastics Society any more. Nobody is suggesting we change 'sickness behaviour' to 'gsiejrho' or 'purple doorknob', they're suggesting it be changed to something that more closely relates to what it describes.

There is admittedly the problem that psychiatrists think we see psychiatric imputations everywhere because we are hypersensitive because we ignorantly think that doctors think 'psychiatric problems aren't real', but this misconception also needs challenging.
 
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Large Donner

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Hip, it is somewhat ironic that you fail to see that chastising Duncan, for suggesting better terminology without negative connotation, by your using the defense that “sickness behaviour” has some scientific validity because some people invented the term and then wrote a definition for it.


Its the classic situation of a “problem” that never needing solving.


Something like a stupid invention on dragons den for a non issue.


http://twentytwowords.com/23-ultra-nifty-inventions-to-solve-problems-that-dont-really-exist/



We have perfectly good words like – symptoms and limitations - that already exist and are understood in the context of disease and illness.


There was never a definition sitting waiting on a shelf, yet to be named, that blocked scientific development and held up medicine that ever needed to be called sickness behaviour. There was never the term sickness behaviour sitting around waiting for a definition to complete itself in order to further develop treatments or to offer anything to medicine or science.


Its pure mental masturbation to even think that the term sickness behaviour needs to exist for any reason.


Behaviour, in the eyes of the medical establishment and the “scientifically literate” the latter whom you seem to think are a Godlike species, is something that needs an outside modifier and is treated by psychs. It's that simple.


If you really trust all doctors or “scientists” to look stuff up that they haven't heard of before rather than believe they can interpret it themselves purely by using their own understanding of words then you have failed to understand the basic disaster and the implications that calling our disease Chronic Fatigue Syndrome has had.


On top of that you are failing to comprehend that such things are not always done innocently and are often calculated attempts at deception just as media and political soundbites often are.
 
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Hip

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But Hip, isn't what you call Humpty-Dumptyfication (I would spell it Dumptification) in fact semiotics and the very serious business of who gets to decide what to call something?

Not quite the same thing. What I humorously called Humpty-Dumptyfication is the idea Duncan suggested, which was for people on this forum to start using a different term, and expect everyone to somehow know what we are talking about. Whereas you are referring changing terminology at a societal level. That can be done, but it requires a whole lot of coordinated effort and agreement. We have yet to get the abominable name "chronic fatigue syndrome" changed, even after decades of discussion.



it be changed to something that more closely relates to what it describes

The term sickness behavior perfectly describes the phenomenon it labels: the set of adaptive behavioral changes that an animal manifests during the course of an infection. The term is apt and accurate.

And note that the study of the sickness behavior mechanism has absolutely nothing to do with ME/CFS, except for one unproven recent idea that suggests this mechanism might possibly be at play in ME/CFS. Thus given it has nothing to do with ME/CFS, it is kind of presumptuous for ME/CFS patients to expect researchers in this completely different field to change their terminology — which is a very apt terminology — just to suit our purposes.
 
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