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

This.

 

It definitely will, with time. It would just be nice if we could actually consent to what happens in the interval. That's the worst of it: our consent isn't simply denied, it's not even considered, willfully and systematically contradicted. Agency has been arbitrarily denied from us, by mere implication of a model that can neither falsify nor justify itself, promoted by people who lie to and about us.

Because until sanity prevails we are the only ones suffering the consequences. It's weird that there can be some pretend argument over morals when there is no worse violation of morality than negating someone's basic humanity, our very right to have a say in our own health care, to have our testimony recorded as is, without interpretation and distortion by people whose only motivation is self-interest.

The practical reality of informed consent has way too many loopholes. A handful of people shouldn't have the power to negate informed consent by mere implication and through deceitful, vague arguments. And yet here we are. Saying one thing while something else entirely is recorded, doing one thing while something else entirely is interpreted.

And no better example than this "discussion" about a "controversy", which mostly consists of ideologically-motivated disease denial, where our comments are censored and our objections dismissed with prejudice. Like freedom of speech, in a small fenced-off pen out of shouting range. We have the right to speak as long as no one can hear us, apparently.

 

Maybe the reference is the PACE paper as the PACE paper provides zero evidence of efficacy in ME and there's also zero evidence of efficacy from such treatments in cancer.

Both relieved by a similar degree.

Useless for both.

 

Actually that's a very risky statement for them as the PACE trial may stay in place for political purposes but equally could potentially fall and open up a massive can of worms at any time.

If it does fall we can hold them to that statement above.

I much prefer this version.....


fatigue has been found to be relieved to a similar degree by sausage rolls in both patients w/ cancer & w/ CFS".....

It's equally as true.

 

And ironically enough, I think that's Sharpe's current "research". So it looks like his fictitious model is failing again and he's just going about his usual way: just pretend it works and insult everyone who disagrees with you. It worked so far and he's painted as a victim for failing so why not?

So he's tying one of his failed research to another with the hope of making it look credible and will end up making it clear how it's all junk. With time, anyway. Somehow I don't think much of his career will hold up to scrutiny.

 

Indeed, just giving a standard regular stock of sausage rolls to a group of ME patients would actually make them rate their fatigue as "improved" on a questionnaire. No joke. It absolutely would. I wish I were exaggerating but I'm not. This is the standard we are working with.

It would be small, about as significant as with PACE, but if you give a handful of free and easy-to-prepare meals per week to a group of sick people who struggle with basic things like cooking and groceries, of course you would find noticeable improvement on a self-reported questionnaire that strictly focus on subjective well-being.

Because when you are at such low levels of functioning, every bit of help is significant. Not in absolute terms, only on relative terms, but then that shows exactly how easy it should be to provide a meaningful impact, which they couldn't even achieve when given millions to try it out.

Really looking forward to the SAUSAGE trial and whatever clever use they make of the acronym. Also its follow-up: the QUICHE trial, which has the extra innovative, novel treatment modality of providing a small toaster oven to participants. Now that would be groundbreaking psychosocial research, literally better than almost all of the existing research. What could be more psychosocially appropriate than helping people in need because of disability?

 

Those trials would never be approved, which is a pity because just thinking about them is making me feel very hungry.

 

Just don't sign up for the CAKE trial...

 

I anticipate renaming the next BPS trial to 'that takes the BISCUIT'
(the questionnaire is edible too).

 

https://twitter.com/user/status/1143274751860838401

 

Its says it. Does that make it true? Also its "promising"? Who is making the promise and what evidence do they have?

What does the data show and was it unblinded with subjective endpoints that where matched against objective data or not?

 

Oh, the trial you can both have and eat!

 

Ah, so same outcome, then?

 

The argument by Sharpe & Greco has been used by Simon Wessely in the past. A 2011 interview with The Times reads:

 

Or maybe the psychotherapy for CFS is horribly misguided and often harmful.