Michael Sharpe: Mind, Medicine and Morals: A Tale of Two Illnesses (2019) BMJ blog - and published responses

I actually thought it was well-written until halfway through the article where they write:
there will be those who seek to escape the paradox by denying the second proposition, insisting that the illness is associated with a disease and that the lack of evidence for this is only provisional. They may argue that given enough time and resources, the disease will surely be found (...) However, while both ways out of the paradox of illness-without-disease have their advocates, neither fully convinces in the light of evidence for both the reality of the illness and the absence of conventionally defined disease.
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That very much gave me the impression that Sharpe thinks there is no disease to be found in ME/CFS. And apparently, I should overcome my "long-standing ‘bifurcated’ habits of thought" and see that illness is "an abstraction from the totality of what is real"...

Anyway, I think it's best not to reply to this argument (which probably has some truth to it) because it is meant to distract from the flawed theory and questionable research practices of Sharpe and colleagues which form the real reason why GET/CBT are controversial in the field of ME/CFS.
 
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I would like to think there might be a useful response to this article. However, it is so bad it is hard to see what one can say. The philosophy is appallingly bad - they gt the views of almost all the philosophers they quote wrong. The analysis is a complete dog's breakfast.

And even if one was charitable and suggested that the improvement seen in PACE was a genuine affect of CBT and GET look how tiny it was! A difference of 3 points in a scale that goes up to 30 at least and probably more. The obvious answer is that patients are dissatisfied with the treatment because, even if it does work, the effect is so tiny as to be a complete waste of time. And of course there is no reason to think it is more than expectation bias. It isn't even as good as the placebo response in other trials.
 
If they genuinely believed that a placebo is good for patients, they should not be giving CBT and GET but some fake biomedical treatment because that will produce stronger placebo responses.

As usual their position is incoherent. Their real goals are keeping CFS in the mental health domain as purely subjective and unexplained condition and selling CBT and GET. Nothing else matters.
 
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I've had a go at reading it in order to write a news item for those unable to read long articles. I'm afraid I gave up on the philosophy section. Seemed like a lot of philosophobabble I'm not prepared to waste time on.

Here's what I managed to write as a summary (too long for the News in Brief, so I decided to dump it here):

Defines illness as subjective symptoms and disease as objective pathology. CBT/GET are called 'illness focused treatments', says they are seen as acceptable for cancer fatigue treatment but not for treating fatigue in ''illness-without-disease'' like CFS (mentions 'vigorous campaigns' against them).

Suggests this is because of the 'moral connotations' of illness and disease and the solution is a change in thinking about illness. Attempts a philosophical discussion (epistemic assumptions...paradox...bifurcation of nature...).

Claims biopsychosocial as a 'new approach' to illness and requires a change in medical and societal thinking so patients can access the 'benefits'.

Completely ignores the fact that CBT/GET don't work for CFS. Not a recommendation.
 
Barry said:
Is this following statement true?
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Here is one of the studies on cancer-related fatigue - interesting that it was done by one of their Dutch colleagues, as are most of the studies on this topic: CBT for fatigued cancer survivors - Gielissen et al.

The subjective fatigue scale used here is the CIS (Checklist Individual Strength), which was developed for CFS (see appendix of this pdf).
The 8 questions (7-pt Likert scale) are: "I feel tired", "Physically I feel exhausted", "I feel fit", "I feel weak", "I feel rested", "Physically I feel I am in a bad condition", "I get tired very quickly", "Physically I feel in a good shape"

Lots of issues with the follow-up in this study.
 
One notable thing among the philosophobabble I noticed:

M Sharpe is now only claiming that CBT/GET treat the symptom fatigue not any of the other symptoms of CFS. Is that new?

Given that in PACE CFS was defined just as the symptom chronic fatigue, does this mean he still thinks that's what CFS is, or does he now recognise it as a multi-symptom condition and only claim to be able to treat the fatigue part of it?
 
Lucibee said:
Here is one of the studies on cancer-related fatigue
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Quite interesting that the imporovement in fatigue in the study looks much more dramatic than in PACE. In PACE the score drops from 28 to 21, with controls dropping to 24 (roughly). In this study the fatigue score almost halves.

Sharpe seems to have forgotten that recently he has only been claiming that CBT makes teeny bit of difference to fatigue in ME/CFS.
 
He is right in that patients with invisible illnesses are treated as second or third class citizens.

The irony is that he himself is such a big part of the problem: if you insist that unblinded studies are good enough evidence and switch outcomes, then you're effectively saying that ME/CFS patients do not deserve reliable science, and that is an instance of patients being treated like second or third class citizens.

The real purpose of this article is just to try and cover up the fact that his science is rubbish and that the critics are right.
 
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Jonathan Edwards said:
Quite interesting that the imporovement in fatigue in the study looks much more dramatic than in PACE. In PACE the score drops from 28 to 21, with controls dropping to 24 (roughly). In this study the fatigue score almost halves.

Sharpe seems to have forgotten that recently he has only been claiming that CBT makes teeny bit of difference to fatigue in ME/CFS.
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perhaps he knows something we dont't
 
Jonathan Edwards said:
Quite interesting that the imporovement in fatigue in the study looks much more dramatic than in PACE. In PACE the score drops from 28 to 21, with controls dropping to 24 (roughly). In this study the fatigue score almost halves.

Sharpe seems to have forgotten that recently he has only been claiming that CBT makes teeny bit of difference to fatigue in ME/CFS.
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The scales used are completely different. CIS is a measure of relative fatigue. CFQ measures *change* of fatigue since first becoming ill. Neither of the measures are comparable between individuals. And they are certainly not comparable between the two different scales.
 
Lucibee said:
The scales used are completely different. CIS is a measure of relative fatigue. CFQ measures change of fatigue since first becoming ill. Neither of the measures are comparable between individuals. And they are certainly not comparable between the two different scales.
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So the claim of comparable benefit in the two conditions is not actually substantiated?
 
Jonathan Edwards said:
So the claim of comparable benefit in the two conditions is not actually substantiated?
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Well, no. And if the results of this long-term follow up are anything to go by, it looks like they are running into difficulties that their UK friends are not acknowledging... https://www.ncbi.nlm.nih.gov/pubmed/28606498
At follow-up, mean fatigue severity was significantly increased to 37.60 (SD=12.76) and mean physical functioning significantly decreased to 73.16 (SD=23.56) compared to post-treatment assessment.
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Just their first paragraph

Contemporary medicine makes an important distinction between ‘illness’, which is defined by the patient’s subjective experience of symptoms and disability, and ‘disease’, which is defined by objectively observable bodily pathology.1 Medicine typically concentrates its efforts on seeking and treating disease. This focus on disease has the huge advantage of providing a target for disease-focused treatment, but the potential disadvantage of neglecting the patient’s experience of illness. This neglect of illness is particularly problematic when the focus on disease alone does not relieve the patient’s suffering.
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They seem to treat disease and 'illness' as entirely different and unrelated things rather than simply having a disease process that causes symptoms. As they do this they probably get confused. I suspect quite a lot of medicine is concerned with treating symptoms (things like pain relief for example) rather than the underlying biological process but even this statement can be a gross over simplification because there can be process on top of process where in treating some processes the underlying cause isn't treated but the biological process behind some symptoms can be treated.

Equally when treatments for disease happen then they can be accompanied with treatments for the symptoms associated with the treatments - so someone on chemo may be given anti sickness tablets. There model doesn't seem to acknowledge this. They do mention cancer fatigue which I believe is often caused by the treatments rather than the cancer itself.

They seem to be making an implicit assumption that there are biological processes that we understand and can treat or symptoms that can be treated without reference to the biological processes although symptoms are produced by something (perhaps not in their minds).

They just don't seem able to present a clear framework of the different concepts and the complexities.

I would tend to think of symptoms as observable effects.
 
As things stand today, the differing moral connotations of illness-with-disease and illness-without-disease remain difficult to overcome in practice. We propose that this is not through a failure of goodwill on anybody’s part but simply because they are so deeply embedded in the semantic fabric through which we make sense of the world.
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Is this simply someone trying to excuse themselves for pushing treatments that don't work and cause harm on a set of patients whilst increasing bigotry.
 
I really cannot work out what they think they are trying to say. They want to separate illness as symptoms from disease as physical process. But later they laugh at Locke for making a distinction between subjective experiences like colours and the physical processes that give rise to these experiences.

I don't even think that a humanity journal would accept this piece. It only gets into BMJ humanities because the editor knows nothing about either medicine or humanities.
 
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