Affective scaffolding and chronic illness: 2022 Eleanor Alexandra Byrne

[Sly Saint]

ABSTRACT
Current attempts to understand unusually high rates of psychiatric illness in complex, chronic illnesses can be guilty of operating within an explanatory framework whereby there are two options. Either (a) that the psychiatric predicaments are secondary to the bodily condition, and (b) that they are primary. In this paper, I draw upon philosophical work on affect, contemporary empirical work, and qualitative first-person patient data to illustrate a much messier reality. I argue that affective experience is generally more complex in such conditions, and that a variety of pre- and post-morbid causal factors dynamically interact such that the resultant psychiatric predicaments do not permit to classification as strictly primary or secondary to the bodily condition. Affective scaffolding, in my view, provides an apt theoretical framework for capturing this nuance.
https://www.tandfonline.com/doi/full/10.1080/09515089.2022.2147422?af=R

eta:

In this paper, my focus is on affective experience specifically pertaining to a group of chronic conditions which are poorly understood by contemporary Western medical science. Common examples of conditions under this category include post-infectious conditions such as Post-Covid Syndrome (perhaps more prominently known as “Long Covid”).12 Other key conditions are Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) and Fibromyalgia, whose aetiology is ultimately unknown, though viral infection and other shared risk factors have been strongly implicated in extant research (Pedersen et al, 2018; Chandan et al, 2021; Kristiansen et al, 2019). These conditions have extremely heterogeneous and extensive multi-system symptomatology, typically including extreme fatigue, chronic pain and cognitive impairment.

The inability to identify consistent organic bases across the patient population for these conditions often earns them labels like “functional syndrome” or “medically unexplained illness”.

 

[Trish]

The author references 2 of her previous papers which we also have threads on which I have linked below.

Byrne, E. A. (2020).
Striking the balance with epistemic injustice in healthcare: The case of chronic fatigue syndrome/myalgic encephalomyelitis. Medicine, Health Care, and Philosophy, 23(3), 371–379.
https://doi.org/10.1007/s11019-020-09945-4
Striking the balance with epistemic injustice in healthcare: the case of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis - Eleanor Byrne - Mar 2020

Byrne, E. A. (2022).
Understanding long Covid: Nosology, social attitudes and stigma. Brain, Behavior, and Immunity, 23(99), 17–24. https://doi.org/10.1016/j.bbi.2021.09.012
Understanding Long Covid: Nosology, Social Attitudes and Stigma, 2021, Byrne

 

[Shadrach Loom]

I’m not sure that this wholly belongs in the psychosomatic category. Although the concept of “scaffolding” adds dubious value, it seems to effectively counter all suggestions of primary psychological aetiology, and by way of balance only to ask that narratives concerning secondary psychological effects consider broader illness outcomes. That’s not the same as psychologising physical symptoms.


Not to say that pursuit of “balance” is a good thing, any more than it is when news programmes on publicly funded broadcasters invite both experts and fantasists to offer perspectives, in the interests of neutrality. And I can see how this paper could offer some succour to psychosomaticists.

 

[Trish]

I’m not sure that this wholly belongs in the psychosomatic category.

Research that addresses anything to do with taking at least a partly psychological view of ME/CFS including ones that directly challenge the psychosomatic model all go in this section of the forum.

 

[shak8]

"...Fibromyalgia, whose aetiology is ultimately unknown..."

Ultimately known. Really?

As yet unknown.

 

[Trish]

I did my best to read the whole paper, finding the language a barrier rather than a help because there are terms I keep having to remind myself what they mean.

Here's my summary of what I think it's about, but I could be wrong.

ME/CFS and other chronic disabling conditions tend to be seen either as psychological and therefore able to be cured with psychological therapies
or physical diseases with no psychological causes or perpetuating factors.

The argument here is that both are involved.

The rationale for this assumption is that pwME have higher levels of psychiatric disorders than healthy people or people with other chronic conditions.

The explanation given for the higher level of mood disorders is both psychosocial and physical:
- psychosocial including lack of medical and social care and support, and loss of parts of our lives that make us happy, deducing from this that there are predisposing factors too, since we carry into our illness whatever positive and negative aspects of our lives including relationships and things we do to lift our mood, and illness means we lose some of these.
- physical factors including the effects of fatigue, brain fog and PEM of deadening emotions

The conclusion seems to be that ME/CFS and the other conditions should be seen as both a physical and mental illness.

I don't really get why this needs philosophical wrappings. Surely it's a statement of the obvious that getting ME/CFS inevitably leads to huge losses of positive aspects from our lives. And in the conditions listed for this article, we have the additional burden of gaslighting that people with other conditions she compares us with don't have. That doesn't make ME/CFS a psychiatric condition.

 

[Andy]

pwME have higher levels of psychiatric disorders than healthy people or people with other chronic conditions

Is evidence presented for that? Higher levels than healthy people logically are highly likely, but is there any proof that pwME have higher levels of psychiatric disorders than other conditions that have an equal disabling effect on patients?

physical factors including the effects of fatigue, brain fog and PEM of deadening emotions

Yeah, I would definitely want to see actual evidence of that.

 

[Trish]

I agree all her statements need evidence. I didn't dig into her list of references and I suspect many if delved into would prove pretty dubious.

 

[Peter T]

I agree all her statements need evidence. I didn't dig into her list of references and I suspect many if delved into would prove pretty dubious.

Then there is the biggie, that most supposedly standardised psychiatric inventories are standardised on the physically healthy population and use questions that confound psychiatric issues and physical health, eg ‘do you have problems going out to socialise with people’. So we have no idea if the normally used questionnaires are accurate for use with people with physical health issues, or if they grossly overestimate the level of psychiatric conditions in this population.

Unfortunately most of the researchers looking at these issues already start from the belief that ME/CFS, MUS, FND are psychosomatic conditions so they feel no need to question the reliability of any limited evidence they do have.

 

[Sean]

unusually high rates of psychiatric illness

Spot the assumption.

 

[bobbler]

I did my best to read the whole paper, finding the language a barrier rather than a help because there are terms I keep having to remind myself what they mean.

Here's my summary of what I think it's about, but I could be wrong.

ME/CFS and other chronic disabling conditions tend to be seen either as psychological and therefore able to be cured with psychological therapies
or physical diseases with no psychological causes or perpetuating factors.

The argument here is that both are involved.

The rationale for this assumption is that pwME have higher levels of psychiatric disorders than healthy people or people with other chronic conditions.

The explanation given for the higher level of mood disorders is both psychosocial and physical:
- psychosocial including lack of medical and social care and support, and loss of parts of our lives that make us happy, deducing from this that there are predisposing factors too, since we carry into our illness whatever positive and negative aspects of our lives including relationships and things we do to lift our mood, and illness means we lose some of these.
- physical factors including the effects of fatigue, brain fog and PEM of deadening emotions

The conclusion seems to be that ME/CFS and the other conditions should be seen as both a physical and mental illness.

I don't really get why this needs philosophical wrappings. Surely it's a statement of the obvious that getting ME/CFS inevitably leads to huge losses of positive aspects from our lives. And in the conditions listed for this article, we have the additional burden of gaslighting that people with other conditions she compares us with don't have. That doesn't make ME/CFS a psychiatric condition.

Yes to me the idea that it is even secondary in many, and certainly not primary, is based only on ignorance/lack of empathy from the onlooker/observer method of 'finding information'. It involves actively choosing not to bring in the situational and then imagine what anyone would feel like being treated that way day in day out and using that as a 'normal reaction' to calibrate against.

But instead assuming that is OK, and anything else is 'abnormal psychology' once you start suggesting that rather than changing how society and specifics treat that person the solution is any form of therapy instead of functional support to reduce the impact on the person isn't psychology but a manifesto from those wanting to do anything but solve the cause and instead muddy it and excuse the situation continuing.

For this reason and agenda I find it all offensive - and the primary cause stuff doubly outrageous. It involves deliberately someone having not just no empathy but no acknowledgement of what someone is being made to put up with then calling the person rather than the situation that author has not only played a part in creating and perpetuating with their writing and claims the abnormal and damaging thing - in order to excuse carrying on doing that.

We need to note that all of these psychosomatic authors are responsible for and causing what are psychological wounds, psychological harms on a regular basis (that we might be unbelieveably strong despite having these levied at us), functionally harmful situations and so on. Not offering any treatments or models. The idea what they are writing is anything other than propaganda to treat people as if their illness doesn't exist and their need for reduced exertion and to have the same human rights as any other person in that country has the privilege of, and not be abused under the disguise of their writings is nonsense. SO before they write it they should take responsibility for what they encouraging by writing it.

And when they do it then pretend their 'therapy' might help what they claim is 'upsetness', whilst calmly not ever writing about the situational causes in order noone says 'erm would that situation be resolved by them ceasing their misinformation and recommended functional help for the disability itself' but pretending the 'situational doesn't need to be studied' (which is what makes their area not psychology, because the rule of psychology is you resolve and sort the situational first), is the equivalent of stealing all of someone's money then pretending you are helping by giving them a tenner back - if it did work. Or the eponymous boss that shouts at someone until they cry then expecting to be called nice because they let said staff have 5mins to 'pull themselves together' or hands them a tissue. It's obscure. And missing the module on empathy yourself really isn't an excuse to pretend it, and the situation you should be aware of what you cause with your writing, doesn't exist.

 

[Mithriel]

I get annoyed when researchers and others start by referencing that there is a high level of psychological problems in ME. The research which shows that was very dubious and that was stated at the time.

There is the problem with the questionnaires. In the 90s, a group of patients showed that there were different results depending on the questions asked. One used "fatigue" as a marker for depression so everyone with CFS was suddenly depressed.

The other problem was that they never used a chronically ill group as a control and when they did they had the same levels or LESS.

It was used to push Wesseley's idea that ME was simply depression. I remember reading that some patients were not as depressed by their situation as they should have been so that was a psychological problem!

There is little evidence that true depression is common in ME. Despair, frustration and hopelessness exists but that is a natural consequence of the lives we are forced to lead.

Even some people who believe in the biochemical nature of ME have accepted these findings but none of it was good research.