Michael Sharpe skewered by @JohntheJack on Twitter

Enter James Coyne stage left

https://twitter.com/user/status/986237315176579074

 

And this fluctuation in activity , with PEM kicking in then not through conscious choice, would have been good data. If it was simple choice without physical consequence then there would be no significant fluctuation in activity levels.

 

It's still a mistake for anyone to present that quote as if he was saying that those sick with CFS are undeserving.

 

If we were inactive because we have false beliefs about our capacity to be active, then CBT or GET would surely change that and lead to an increase in activity.

Direct activity measures is the best way to confirm or eliminate that hypothesis.

 

I have to agree with Esther12 about the meaning of that particular quote from Sharpe. Read in context, it seems to be as if the word "undeserving" should have been in quote marks, as if that's how the system views them--not he himself. There are plenty of things to say about Sharpe's beliefs and previous statements without trotting out that quote.

 

I have managed to restrain myself from direct engagement so far, but I (perhaps impulsively) waded in to a correct a claim this guy made about 'not having a proper control' in the long-term follow-up study. What he meant was, despite their plan to compare all therapies with control at long-term follow-up, he now believes that the results from this analysis can be dismissed, because many control patients got post-trial CBT or GET. In other words, there wasn't a "proper control".

As far as I know, the plan was always to provide CBT and GET after the trial endpoint, but I guess they had hoped they would still get a good between-groups effect at long-term follow-up anyway, so wouldn't have to do any special pleading.

Thinking like a PACE author for the moment, I think it might have been wise on their part not to publish the LTFU data. But perhaps their proposal bound them to it. And perhaps people would have said "why are you hiding the data?".

I suspect some of those tweets from Sharpe will disappear shortly. Feel free to take screenshots if useful.

 

I suppose we can't expect everyone to understand the issues like we do, though that galls me that ridiculous nonsense is convincing to people. I suppose that explains politics

Thats an interesting question, though the crux of his beliefs seems to be there is no medical test showing a dysfunction in ME/CFS patients hence it has to be psychological and besides world cup players are not "claiming" disability. However i notice he never acknowledges the results from biomedical findings, likely because they would undermine his theory. Mind you i have not gone through all his tweets and public writings so might be wrong on this one.

Not necessarily, entire countries are run by people who voted for alternative facts despite all the concrete evidence to the contrary. So he probably thinks the CBT/GET just wasn't strong enough, which may be why the UK locks up patients involuntarily, because they think its necessary to "fix" people who won't listen to "the truth"

 

So patients are motivated enough to participate in the PACE-trial, but they aren't motivated enough to get more productive? Is that what Sharpe is saying?

 

If you think like a Psychiatrist invested in the BPS theory, I would of assumed you'd actually be extremely interested in what people 'choose to do'. In fact it seems like data to that effect is essential to measuring the effects of a 'behavioural therapy'. After all, people also 'choose' how to respond to questionnaires as well.

 

I thought he was saying that activity was a poor measure as ill patients who had been helped by CBT and GET might choose to remain inactive despite the improvements in their health because... err... ...reasons. Which to my mind displayed that he has an extremely poor understanding of the frustrations and aspirations of the average ME/CFS sufferer, despite his many years 'researching' the condition.

But there's not too much point worying about what he meant, because we know it's just an excuse. The TSC minutes clearly show that whatever Sharpe says the real reason they dropped actigraphy is because the Dutch study indicated it wouldn't show the improvement they wanted to see.

 

Thats basically the crux of the argument, he is desperately searching for an excuse that can't be skewered.

 

Walking gives you a choice in how far you go, yet answering a question gives you no choice when the treatment is CBT?

Interesting!

 

[n.b. this post inspired by Alvin, not directed at Alvin]

The foundation of all his arguments is his core belief system that the illness itself is a choice.
Unless he contracts ME, I'm fairly certain that core belief system is not going to change. Same for the whole BPS crew.

I don't see much merit in further engaging him directly, as it comes down to trying to achieve the equivalent of him admitting his entire set of core values and life's work was wrong. Few people are brave/humble enough to make a shift like that; and fewer still on the public stage.

I think it makes more sense to simply keep presenting the facts and their proofs to the general public without wasting energy on making him or anyone else wrong. They are wrong, we know it, we've said it, and we are in the midst of a sea change in public opinion. Who cares what he thinks, as long as we keep grabbing the reins of the narrative and steer away from the propaganda.
We can, and are, changing the narrative without the need to repeatedly personalise the counter-arguments.

I'm not suggesting never mentioning him or addressing him, I'm trying to point out what is at the basis of any conversation like that, and why our energy might be better spent focusing on the widespread dissemination of the counter-narrative that happens to be the truthful one.

 

@Alvin is honoured to have inspired posts.
He should perhaps use this disclaimer in similar situations

I agree

True

I understand what your getting at but if we don't challenge him then many will believe his tripe, we have not defeated the PACErs yet, we may be on the way but we are still fighting in the trenches and its still not retracted and dust binned. The problem with ignoring reality deniers is it empowers them to gain supporters, when your the only voice in the right place at the right time people tend to listen to you.
That said i completely agree with not wasting energy we don't have, if there was a Tuller article addressing every angle he tries (like the conflict of interest one) then someone could just post it and life would go on and he would not be the righteous but wrong one on tap.

 

In Germany, at the moment there is a tendency to build up digital archives where researchers can/should store their data. Once a psychologist told they can't provide their raw data because people could re-check their findings and that would be a problem; another one yesterday told they can't provide raw data because they regularly manipulate them (pick probands in order to get the wanted results, dismiss unwanted results etc.) and people could find out.

I guess that could be common practice in psychology.

 

But then the evidence would be there (and in this thread) of what a feeble and fabricated smear campaign that is. Would be the same old tactics, but hopefully now in a more exposed environment.

 

This doesn't put my mind at rest I'm afraid. The reader doesn't go and check the facts, and in reality it is not straightforward to correct things if they are misrepresented unless you're dealing with language that can be interpreted only one way, and clear errors of fact.

 

Prof Michael Sharpe's Oxford home & choice of venue for "special ethics" lectures.

https://twitter.com/user/status/987403149462958080