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

Jonathan Edwards said:
Is this blog a summary of an article somewhere else or is that just a mistake in the description?

Maybe I should write a reply? Or maybe leave it alone?
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Please do, would anything from your Grand Rounds yesterday be appropriate to include?

Your previously stated views on CBT for ME being morally/ethically wrong would be a good rebuttal to this.
 
However, whilst such treatments are readily accepted by patients with cancer-related fatigue, they may be strongly rejected by people with CFS; why is this?
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[my bold]

The answer is absurdly simple. They are different treatments with different outcome objectives!

For cancer it is supportive with no pretence of claiming improvement or recovery from their illness; just helping people cope with the fallout.

For ME/CFS, they very much do claim treatments lead to improvement and/or recovery from the primary illness itself.

How can he not see that? To me that is much better question to ask.
 
I thought there had been discussion some time back about a paper discussing CBT for and/or psychological predictors of long-term post-cancer-treatment fatigue. Maybe somebody who is much better organized than I am will recall more specifically. Anyway, I see no reason to think that BPS types are content to approach CBT for cancer as merely supportive. Long-term post-treatment impairments are ripe for MUSification.
 
Trish said:
I'm just catching up with this thread. It says it's a summary preview in advance of publication of the journal in June. So this is just a taste of the full thing. Groan. :(

Perhaps we should wait for the full article before responding. Once that's available I hope you and/or @dave30th will write a response.
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BMJ Hums editor has been helpful on Twitter in encouraging responses to full article in form of commentary or blog. Commentaries will be behind a paywall. Blog will be open. As it is a medical humanities platform I would really like to respond but am so exhausted - and bored - giving my time and energy to nonsense of PACE authors. No matter what anyone says - patients, researchers, academics, doctors - Michael, like Wessely before him, will find platforms/ways to channel his obnoxious rhetoric. I find it unethical - not least because patients are being actively harmed by 'benign' GET.
 
Because CBT/GET doesn't work well, because it is associated with denial of disease, because it is based on the assumption that acceptance of disease will undermine effectiveness of CBT/GET, because it is associated with claims that ME/CFS is a mental condition, because unlike in the case of accepted mental conditions ME/CFS is expected to respond to "illness focussed" therapy with little to no disease focussed organic medicine, because deconditioning is not a mental condition anyway, because it is presented as a monolith, because the arguments for CBT/GET are disingenuous as the comparison with cancer shows (your cancer is a real disease but we can help vs. your ME/CFS is not a real disease and we can't help you as well if you believe it is), because fundamentally it is wrong to represent a large. possibly heterogenous population as all suffering from deconditioning + an anxiety disorder focussed on worries about exercise and relapse.
 
large donner said:
Is there even any evidence of this in cancer anyway? Is it proven to be more supportive than chatting with friends, taking a trip to the seaside, watching telly or doing absolutely nothing and carrying on as normal with the addition of the actual biomedical treatments?
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I lost a friend and colleague to cancer not so long ago, and he and his wife both attended counselling sessions. They saw these sessions as lifelines for them both in horrendously difficult circumstances. So I don't see any need or point to knock it, it's just not the same thing, nor for the same purpose, as it is when applied to ME. Anything that helps people to cope with any illness is OK, just not when there is a pretence it will fix the illness itself. If we start trying to knock supportive help, then we undermine our own case, and give validity to MS's question "Why is this?".
 
DokaGirl said:
The Oxford Compact English Dictionary defines "benign" as 1 kind and gentle. 2 not harmful or harsh; favourable...not malignant.

It does not say effective. Neither does the article.


Rather tedious, the same old argument - why do cancer patients welcome CBT and GET, and pwME don't?

Because CBT and GET are all that is on offer in the UK for ME! There is no biomedical treatment for ME, as there is with cancer.

If pwcancer were told they would get better merely from CBT and GET - there would be a great hue and cry!
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Context is critical.

Sugar is benign. Not to diabetics or in large quantity. But it generally is. It's a meaningless statement precisely because exceptions exist. Plus the harm is well-documented by now so to continue claiming it is harmless is blatant lying and completely unethical. Every patient survey confirmed CBT/GET to be useless at best, harmful to the point of leading to death at worst. The reliability to Sharpe's research is the same, since everything relies on self-reports.

I just don't get at this point how they don't see how badly this will backfire. Sharpe is clearly enjoying twisting the knife he put in our back. He knows people are dying because of his work. He is openly mocking us for begging for our lives, knowing the outcome is lethal and smirking at our suffering. He continues lying because he's not challenged, allowed to uncritically air misleading personal grievances as if they were valid scientific discourse.

Once suspension of disbelief is lifted this will look breathtakingly ghoulish. When people ask "how did they not know?" and there will be years of "oh, they knew and mocked us the whole time".

But as usual it's other people's reactions that is inexplicable, enabling a human rights disaster by taking for granted what a handful of people are saying in direct contradiction to hundreds of thousands of complaints sustained over several decades and a more reliable body of research. Based on an evidence base that seriously suggests yelling STOP at your symptoms is credible medicine. What a freaking nightmare.
 
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Jonathan Edwards said:
Is this blog a summary of an article somewhere else or is that just a mistake in the description?

Maybe I should write a reply? Or maybe leave it alone?
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Please do. It's clear everything we say is treated as the rantings and ravings of delusional people. Even though our own self-perception is also evidence of full recovery. Because whatever.

It's supposed to be a larger article published next week but they preempted the London conference, although the substance will likely remain largely the same.

There's supposed to be 2 tiers of comments: one below the post and another lengthier reply published in the issue.
 
Nasim Marie Jafry said:
BMJ Hums editor has been helpful on Twitter in encouraging responses to full article in form of commentary or blog. Commentaries will be behind a paywall. Blog will be open. As it is a medical humanities platform I would really like to respond but am so exhausted - and bored - giving my time and energy to nonsense of PACE authors.
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Their expectation that sick, exhausted patients can just bang out a commentary or a blog for them explaining all the same things that have already been explained a thousand times before really irritated me in that Twitter thread. The more I think about it, the more annoyed I become.

I doubt playing BPS Whack-A-Mole is anybody's idea of a good time. Time can't come soon enough for these people to run out of platforms.
 
rvallee said:
Oh, he knows. He just doesn't care.
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I'm not entirely sure. I wonder if it gives insight into how incredibly blind he is to perspectives other than his. Given the way he (and the PACE mindset generally) believes ME/CFS is an illness solely of faulty perceptions, I strongly suspect he may truly still believe that pwME need nothing more than "support" to overcome their illness. I think it maybe gives insight into the deeply flawed perceptions of his breed of psychiatrists.
 
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