Michael Sharpe skewered by @JohntheJack on Twitter

Gotcha?

https://twitter.com/user/status/1010889813413724161

 

If you "can't measure an underlying condition", how the heck can you run a trial on it? Am genuinely baffled.

ETA: I'm no scientist but I can't see how £5 million of taxpayers money was justified being spent on something you can't even measure.

 

Does that mean there should be no treatment trials for CFS until we can measure the underlying condition?

My view is that speculative treatment trials are probably not a sensible priority until we have a better understanding of cause, sub-groups, etc, but I know that some disagree.

 

It wasn't that long ago that PACE was a great RCT, a thing of beauty, conclusive evidence.

 

That's sort of the point I was trying to make, but not well enough, about wasting £5 million of taxpayers money on something the 'researchers' involved didn't even know how to measure in any meaningful/objective way. Rather than being a 'great, great trial' or 'a thing of beauty', it was more like 'a load of nonsense'.

 

Is this an admission the trial was a waste of time ?

 

He is basically trying to say that ME is a subjective condition with no objective markers so they did a subjective study of treatments.

Except they had objective measures of improvement to measure but decided not to and changed the protocol halfway through the non controlled study and changed the measures of recovery and improvement to yield a positive result from their favoured treatments which tell people to ignore symptoms and say they are better in order to get better on questionnaires, for which he now admits was not an ME study but a study on CFS, whatever they decided that was after getting £5 million of tax payers money to study ME.

The study purpose wasn't to measure objective disease markers it was to compare treatments, which they did, and failed to show CBT and GET have any scientific efficacy so they just changed the definitions of recovery and improvement and have been caught out by MPs and now they don't like it.

 

He said "they" couldn't measure it. They chose not to. They ditched all the tools that would have allowed them to measure it because those tools didn't confirm their theories about it, not because those tools didn't measure the condition.

And if they are going to try to explain that it's a "subjective" condition, they might as well then say that there is no underlying condition and be done with it.

 

Surely there is no way of measuring the underlying condition. You might measure the amount of activity undertaken, but that is not the underlying condition. That may be an effect of the underlying condition, but there could be other variables affecting it.

 

MS can say what he likes. It doesn't change the fact that their treatments simply tell pts how to complete questionnaires the way they want them to (ie, to demonstrate the desired "effect").

 

ME is the belief that you have ME, so a trial to see if you can change beliefs makes sense to Sharpe, there's nothing objective to measure. There's the tiresome business of dressing it up as science to try to stop the militant activists from getting too boisterous, but that's all just annoying fluff. Now can everybody just leave him alone to get on with his work?

 

PACE completely ignored objectively measurable symptoms, which we know much more closely reflects the underlying condition. MS might argue that because the underlying condition is not understood, then also not understood are which symptoms most accurately reflect it. Having a cogent answer for that would be good. I know we know, but how do you get that across?

MS could just say: Well if the real problem is unhelpful beliefs about an illness that is no longer present, then the remaining underlying condition is psychological, so psychologically-based measures are all that is needed? He might further argue that objective measures may not be good evidence if a person is not of a mind to overcome their unhelpful beliefs; if a person is genuinely deconditioned and refuses to do what it takes to recondition, for instance. I would think the counter to that, is that for those who showed apparent subjective improvement, then at the very least there would be a matching objective improvement, else their theory is disproved.

Edit: Garbled sentence sorted, at least the one I spotted.

 

There is a danger in falling foul of the twist to the McNamara doctrine.

As you will know the original was "Measure what is important, don't make important what you can measure".

The twist is "If you can't measure what is important, make important what you can measure".

 

But they can't even properly measure what they *did* make important -> fatigue

 

I guess I was assuming that a measure of the underlying condition would require a measure of the underlying biological processes.

I certainly agree that PACE would have been a more worthwhile piece of research if they had not dropped actometers, or downplayed their other objective outcomes.

 

But they did so in the past, no? In the 80s or so. Wasn't it Wessely who said ME is just the belief to have ME? They probably realized somewhere sometime it wasn't so smart to say that too loud again.

 

Yes, I posted about it recently https://www.s4me.info/threads/micha...ohnthejack-on-twitter.3464/page-79#post-83529.

 

This conversation that Sharpe has on Twitter reminds me of a quote. I forgot who said it but i am sure someone remembers:
‘Damn patients, they don’t want to get better’

 

I think the quote you’re thinking of is “The bastards don’t want to get better.”

It was said by a supervisor in the FINE trial. You can find it on page 18 here:
https://niceguidelines.files.wordpress.com/2011/12/the-bastards-don_t-want-to-get-better.pdf

Full quote: