Michael Sharpe skewered by @JohntheJack on Twitter

EzzieD said:
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.
Click to expand...

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.
 
strategist said:
It wasn't that long ago that PACE was a great RCT, a thing of beauty, conclusive evidence.
Click to expand...
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'.
 
Michael Sharpe said:
Except we couldn't/cant measure the underlying condition. That is the main problem. We would have if we could.
Click to expand...

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.
 
Last edited:
Esther12 said:
Does that mean there should be no treatment trials for CFS until we can measure the underlying condition?
Click to expand...

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.
 
Lucibee said:
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
Click to expand...
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.
 
Last edited:
Lucibee said:
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.
Click to expand...

I think this is what they believe but they don't quite want to come out and say it.

The measurement issue is interesting in that it is hard. Measuring symptoms suggests having some form of which symptoms are worse (or treat all symptoms the same but in itself that is an assumption). They are also very subjective if you measure severity as without an actual symptom measure you end up measuring perceived symptom severity and this can change or be changed by things like CBT.

Esther12 said:
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.
Click to expand...

I think it all depends on the likely success of a potential treatment but I'm not seeing anything at the moment.

I wonder if symptom relief treatments need a different measure.
 
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".
 
chrisb said:
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".
Click to expand...

But they can't even properly measure what they *did* make important -> fatigue
 
Lucibee said:
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.
Click to expand...

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.
 
Milo said:
This cnversation 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’
Click to expand...
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:
There have been one or two times where I have been worried because they have got angry at the patients...that anger has been communicated to the patients. Their frustration has reached the point where they sort of boiled over... there is sort of feeling that the patient should be grateful and follow your advice, and in actual fact, what happens is the patient is quite resistant and there is this thing like you know, “The bastards don’t want to get better”...I think it’s a difficult thing for all therapists and I think basically over the time you just basically learn to cope with it, and but they have not had time.’ (Supervisor)
Click to expand...
 
You must log in or register to reply here.
Back
Top Bottom