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

https://twitter.com/user/status/1141069989010661376

 

But the converse is therefore also valid...

"The focus of this new approach on illness is then seen as merely a pragmatic way of simplifying the complexity of illness-without-known-disease for the purposes of intervention, valuable where such a simplification is possible and relevant, but also potentially unhelpful or even damaging where it is not."

... but the potential for harm even greater, given the minimal scientific underpinning. To me they are indirectly hanging themselves.

 

Ah, well, you always need someone to play devil's advocate, right? Even with ethics and morals, someone has to argue against them, I guess.

 

I don't even think it's worth thinking that far, to bother with the hollow substance of the rhetoric. The very premise that illness is a completely distinct and separate concept from disease is absurd.

It is like arguing that music has nothing whatsoever to do with the instruments that create it. The music is the outcome of a very complex interaction of shape, form, function, movement, modulation, amplification and hundreds of other variables that link both music and instrument in a way that cannot be separated like Sharpe tries to argue here.

Illness is the direct consequence of disease, full stop. There is no illness without disease, there is simply no such thing. It's intellectual nihilism to argue so.

 

Right. "illness without disease" is nonsense. If one does not believe in any sort of magical mind-body dualism, then there necessarily must be demonstrable pathology. Even in say, behavioural disorders, there is still pathology within the body. Anything else is dualism.

 

One thing that I'd like to point out to anyone wishing to write a retort:

Try to avoid making your reply about ME or CFS. It is not just about us.

My second piece of advice is to not debate them on their (biased) terms. They wish to characterise the argument around the controversy of explained vs unexplained illness. Saying oh, but ME is explained by xyz papers, therefore ME is a disease feeds their argument and will not help.

I'd suggest that their premise is wrong. The debate around "realness" vs "unexplained, disease vs illness, psychological vs physical is always secondary. It is the outcomes that matter primarily. Patients don't ultimately care if it is "psychological" if they get better. The dispute around psychological arose as a result of the lack of efficacy.

 

While I was looking up the origins of this "illness-without-disease", I came across this online version of chapter 2 from the Routledge Companion to the Philosophy of Medicine.
It's well worth a read. [I'm now considering getting hold of the book itself! - Out in paperback in August, apparently]

This bit is reassuring:

I think it's high time some folks joined the 21st century.

(eta: There's a more in-depth discussion by Bjorn Hofmann here - pdf)

 

Put me down on that list. Whatever works works, the details are not that important when it does work. You can figure this out afterward.

It's not really plausible given I was in the best years of my life, content and driven in every respect, as well as never having experienced anything that even remotely comes close to mild trauma. But still, if it worked I would have jumped at it. One of the first things I did when I initially improved is join a gym. It did me no good, I had to stop shortly after.

More importantly, though: if it did work it would be a massive breakthrough. Millions would be freed from a nightmare, praising those who had helped overcome it like heroes. There would be a measurable impact on employment, tax income, education enrollment, etc. It's beyond absurd to insist that the treatment works and yet everyone despises it, simply chooses to reject it out of some imagined pettiness.

What's the very best they can point at? A few cases of purely subjective self-report on shoddy questionnaires limited to one dimension of the illness, dutifully avoiding any and all objective measures. Some of the research we've seen recently focused on simple cases where months of efforts by a whole team led only to a slight subjective improvement on some aspects, more likely than not brought about by symptom management ME patients are generally denied.

Ultimately it is all about outcome. The outcome of this paradigm is a human rights disaster. This is a fact. Even dogmatic attachment to this model does not change the fact that millions are suffering from destitution, ostracization and the general breakdown of their entire quality of life and ability to take care of themselves. Nothing has changed in this regard. The only plausible explanation is we simply refuse, which is legitimately insane to suggest.

This is the outcome on which this 20+ year experiment should be judged, the ongoing human rights disaster, not the hopes and dreams of those who have promoted the solution years before they bothered testing any of its assumptions and insist it is the patients who fail the treatment, not the treatment that fails the patients.

 

Has Sharpe been asked for his interpretation of "illness versus disease" in things like Autism, Parkinsons and Alzheimers etc?
It would be interesting to see if he is prepared to say that they are diseases as opposed to illnesses in his own interpretation of the terms.

I wonder what objective proof of pathology he could offer up for those diseases.

 

Not likely, Prof Bishop may claim to support stringent, open science, but like many has a blindspot for this kind of woolly health psychobabble. In publications, she has referred to the ME-militant meme as a good reason for NOT sharing data.

You can read that article here.

 

Thanks, @Woolie. It was meant ironically. I'm aware that she even praised defended the SMILE trial. http://www.virology.ws/2018/06/25/trial-by-error-my-exchange-with-professor-bishop/

 

This is what she said on the SMC site:

"The gains for patients in this study do seem solid, however, I am still rather uneasy because while the patient allocation and statistical analysis of the trial appear to be done to a high standard, the intervention that was assessed is commercial and associated with a number of warning signs. The Lightning Process appears based on neurolinguistic programming, which, despite its scientific-sounding name, has long been recognised as pseudoscience."

 

Thanks, @Snow Leopard . I changed "praised" to "defended", based on that quote:

"In sum, it is rather extraordinary for me to find myself in the position of defending a study that is not in my area and that claims to find a benefit from a pseudoscientific intervention. However, since you ask for my judgement on the issues you raised, my reading is that the data from the 2017 paper support the conclusion of superior outcome for the LP, both for the original primary outcome, and for the revised primary outcome; crucially, the latter results appears to hold when analysis is restricted to those recruited after the feasibility study."

http://www.virology.ws/2018/06/25/trial-by-error-my-exchange-with-professor-bishop/

 

Right. and yet she still let herself get used by the SMC to promote that piece of crap And when I pointed out to her the methodological problems, she misread them and, for a second time, gave the study a clean bill of health. Her actions on this matter have been disgraceful.

 

I think what she meant was:

The gains for patients in this study do seem solid, however, I am still rather uneasy because while the patient allocation and statistical analysis of the trial appear to be done to the appallingly low standard we prefer in psychology, the intervention that was assessed is commercial and associated with a number of warning signs. The Lightning Process appears based on neurolinguistic programming, which, despite its pseudoscientific-sounding name, has long been recognised as not being the pseudoscience we prefer in Oxford but a competitor.

 

Thanks for the laugh, @Jonathan Edwards.

That to me appears to summarize pretty well how the proponents of the cognitive-behavioral approach to ME view the alleged benefits of LP.

Michael Sharpe on the SMILE trial: "This trial tests the effectiveness of a commercially available brief intensive talking therapy for CFS called the Lightning Process. The treatment has similarities to cognitive behaviour therapy (CBT) and is given in groups." https://www.sciencemediacentre.org/expert-reaction-to-controversial-treatment-for-cfsme/

Trudie Chalder on a previous LP study: "As this is the first report of young people's experiences with the Lightning Process, it will be important to consider the helpful and unhelpful treatment components for future refinement of interventions for CFS/ME." - https://www.ncbi.nlm.nih.gov/pubmed/22989369

 

That really seems to be the secret sauce, uh? Just make it seem solid, all style and no substance, put all the effort on seemingly-competent analysis, make it as complex and sciencey-soundy as possible and you can sell anything. Overanalyze the crap out of it, use all the cheap pop philosophy to add a degree of old-style "it if uses big words then it must be very serious".

Nearly all comments I have seen praising PACE and other trials gush over this: it looks so darn professional and serious that the completely hollow substance and too-good-to-be-true results magically become solid and infallible, even when they are the vaguest, least substantial possible.

It's as if marketing had found its way into academic research and accomplished the same "the message is the substance" outcome. It's all Potemkin science, it should not fool anyone but it absolutely does. "Skeptics" are some of the most gullible out there.

And it's all basically alternative medicine, just relying on psychological magical thinking instead of spiritual magical thinking. It's no more reliable or valid but it looks so darn serious that you just can't help but gush over the intricate hems of the imperial coat, which obviously aren't red, you silly quack, they are obviously blue and if you can't see that then you are wrong.

 

Mediocrity spreads like radioactivity, everything it touches turns to waste. The BMJ was already too infected and once that happens it's too late to go back, it's impossible to do so without consequences, the career-ending type. We're seeing the same with Cochrane. They are doing such an absurdly bad job that I truly think it may end up killing the organisation, no one should trust them once the suspension of disbelief is lifted. They have acted in the worst possible way at every opportunity.

Really amazing how universal the Chernobyl closing statement is. "Every lie we tell incurs a debt to the truth. Sooner or later that debt is paid." For now we are the ones who pay that debt, no harm done to the perpetrators. But the way to solidify a lie is to snare in as many people as you can, to have them share the burden of keeping it alive, no matter the cost to others.

Education is truly lost on fools, and there's a seemingly endless supply of them.