Conceptualising illness and disease: reflections on Sharpe and Greco (2019) Wilshire and Ward

Moderator note
This post has been copied and the discussion moved from the thread on Sharpe's original paper here:
https://www.s4me.info/threads/micha...-published-responses.9729/page-16#post-224660

A response from Carolyn Wilshire and Tony Ward

Medical Humanities - Conceptualising illness and disease: reflections on Sharpe and Greco

Conclusion
The term “illness without disease”, in the sense that Sharpe and Greco use it, is problematic. Its implication, that we must create a distinction between medically confirmed disease on the one hand and feelings/beliefs/attitudes on the other, is founded on the very type of dualistic thinking that Sharpe and Greco so strongly reject. In this paper, we have presented a new framework for conceptualising the relationship between explanatory disease models and the illness experience. This framework helps us to understand why some models are better than others at predicting illness phenomena. Crucially, it treats all types of causal claims in the same manner, whether they are phrased at a psychological or a biological level of description, and demands the same high standards of supporting evidence for both. We have argued here that, in medicine, it is not appropriate to make claims about causation on the basis of non-specific observations, in which direction of causation has not been clearly established, or simply because there is a lack of anything better.17 Causal claims that are phrased at a psychological level of description need to be subjected to the same tests as any other causal claim. Treatments founded on unsubstantiated claims—even psychological ones—can do harm, no matter how well intentioned they are. Even if patients are not directly harmed by the treatment, they may bear other costs. For example, they may feel personally responsible if they fail to recover. Also, any concerns they do raise may be dismissed, or even caricatured. Sharpe and Greco’s own characterisation of the concerns of patients with MECFS provides a powerful illustration of this latter consequence.

 

Scihub link for those without access otherwise, https://sci-hub.se/10.1136/medhum-2019-011756

 

"""Phrased at a psychological level of description""" -
-That's a good way to put it.


"""Causal claims that are phrased at a psychological level of description need to be subjected to the same tests as any other causal claim."""

-I might be a step harsher and say I suspect you can't even have a meaningful causal medical theory that's 'phrased at the psychological level'.

-It seems that a psychological phrasing is more useful for the practical purpose of getting across the presentation and consequences of a condition.

 

Precisely. It's like some sort of psychiatrists' land grab - if no one else claims it then we'll have it.

 

The authors argue that medicine has "classificatory models" which "do not identify aetiology or any specific pathogenesis but rather describe collections of clinical phenomena that often occur together" like depression for example. Classificatory models may help in finding the underlying pathology, as Wilshere & Ward illustrate with the intriguing example of McArdle disease. But they emphasise that with classificatory models a common mistake is to confuse description with causation for example when people say “You are having difficulty sleeping because you have depression". We don't know that. As the authors explain: "this statement is unsound because depression itself is not a causal construct, it merely identifies a set of clinical features that often go together." That's a mistake Sharpe and Greco were making about ME/CFS, as they seem to propose the category "Illness without disease" to make generalisations and claims about causation (psychosocial) and treatment (GET/CBT).

At least that's my short interpretation/summary... Hope I haven't misunderstood. Here are some interesting quotes from the paper's conclusion:

 

Indeed. Land previously grabbed by 'evil spirits' etc

 

It's been ages since I've had any kind of Christmas Wish.

I do wish this Christmas for this article to be widely shared, considered/pondered/talked about among the medical/research establishment.

I want it to go on tour. (now just realising there are no fire works emojis)

 

Absolutely superb. This single paper is more coherent and relevant than not only Sharpe's entire career, but the entire BPS and MUS models. It actually incorporates the patient experience, rather than rejecting it whole and replacing it with a fictitious construct that only "fits" as long no actual evidence for it is demanded.

Wilshire and Ward essentially, though without making it explicit, reject the BPS approach to lower the barrier for psychological evidence as an explanation for concepts outside of our current level of understanding. Instead, the burden of evidence should be equivalent for psychological explanations and there is a strong moral argument to be made of the failure in doing otherwise, given how disastrous this hysteria-of-the-gaps has already proven itself to be.

I especially like the recognition of opportunity cost, which in the case of ME has been rejecting adequate research funding and building up clinical expertise that actually have a chance of adding to our knowledge of the disease, and a sober recognition that the arguments made by Sharpe and his like-minded colleagues are built on a caricature of reality, deliberately misrepresent not only the illness experience but the very criticism leveled at it. In reality, Sharpe's model is no better than pointing to demons as a cause, for all that it is relevant to the actual illness experience, it merely assigns all the fault to a black box and argues this is good enough to make highly consequential decisions for millions, even without validating outcomes in any meaningful way.

Of course the main conflict is also pointed out in the paper: Sharpe and his colleagues have built their entire career on those fictitious models and as such cannot change course, cannot recognize even basic flaws, no matter the outcomes to the patients, no matter how millions of lives it ruins. The points made here, outlandishly more coherent and relevant than the whole of Sharpe's career, will be utterly lost on Sharpe and his colleagues because they are too personally and professionally attached to being viewed as right, not to actually be right, and for entirely self-serving reasons.

I think this is a very salient argument on bioethics and the entire approach to MUS, which will only grow in recognition in the coming years along with the harsh realization of just how failed an illness model built entirely on a BPS perspective has actually managed to produce the most embarrassing outcome of actually regressing an entire area of scientific knowledge. Very likely relevant to the efforts by @dave30th and @Diane O'Leary on the broader debate of MUS.

 

Nice analysis. All the right notes and in the right order too.

Impressive effort as a (needed) response to drivel and a bit encouraging that the BMJ gave it full space.

 

Several components of the CBT/GET model fail at this first step.

Deconditioning is not present in the beginning in many cases, and even later on a substantial portion of cases don't differ in their fitness level from healthy sedentary controls.

Relevant illness beliefs seem to typically form over time, in response to illness so they cannot be the cause. Many patients have never heard about PEM or ME/CFS. Others tried to ignore the symptoms and didn't believe they had a chronic illness.

And my feeling is that there is a mismatch between the severity of the illness and the illness beliefs and deconditioning. The illness is quite disabling, so any causal beliefs and behaviours would need to be rather extreme and well in excess of what is seen in similarly disabling conditions that aren't believed to be caused by beliefs and behaviours (like multiple sclerosis). This doesn't seem to be the case.

My neighbor has a relative with RA who wears crystal bracelets to make the illness better, apparently because the illness is so shitty their ability to say no to anything that promises relief is eroded. That would be considered a weird illness belief. I'm pretty sure you can find all sorts of weird ideas among sick patients, and they are probably best predicted by how poorly understood and untreatable and shitty the illness is.

 

What Sharpe et al have done is proposing a solution and then creating an illness model (a narrative) that logically leads back to the solution. The illness model just doesn't fit reality, but you can always accuse critics of dualistic thinking for finding all this hard to believe.

 

Nicely put.

 

Confirmed by mild patients who can have normal CPETs but cannot reproduce on day 2. Deconditioning should show up on day 1 of such a test, instead what we find is PEM on day 2. This should have been the end of this debate. It's absurd that we still have to argue about falsified imaginary fluctuating deconditioning years after PACE's results have been debunked and the blatant admission that participants were active enough to drop actimetry but deconditioned enough for the GET hypothesis to justify declassifying ME as a legitimate disease.

 

I think the trouble with 'psychosocially phrased' causative models is that you can always tweak them to suit your pet theory.

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(Putting on the BPS hat for a minute):

For instance, patients not being deconditioned to start just means that the beliefs are particularly maladaptive because they precede the physical sensations of deconditioning. Patients who have been ill for some time but who do not test as 'deconditioned' simply have such maladaptive beliefs that they remain locked-in to the syndrome despite the lack of deconditioning symptoms.

I agree that this is where things ought to totally fall apart but maybe it can be tweaked. I think the key would be bringing in a 'mass hysteria'-spread belief that exertion is very harmful - even more so than the deconditioning; from the BPS perspective, patients hold this mistaken belief deeply, and act rationally upon it by not exerting.

Now, you may say that many patients say they are ill for years before they hear of the term CFS or ME, but they're lying about that, and/or doctor shopped until they found some doctor who told them not to exert themselves if it makes them feel worse.

Now, you say that the interventions in the PACE trial didn't work, but that's just because they need to be tweaked to reach people. There's infinite small ways that they could be adjusted.

etc. etc. - At this point hopefully it becomes so implausible and tenuous and ultimately meaningless to people who aren't religiously invested in the theory, but you can still stretch and rationalize the theory if you really want to

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The lesson for me is that you can't have a meaningful causative psychosocial theory in medicine.

That doesn't mean it's never useful to think in a psychosocial frame, or that you shouldn't test 'psychosocial' interventions (with a methodology that leads to reliable interpretable evidence).