Michael Sharpe skewered by @JohntheJack on Twitter

Michael Sharpe said:
Actigraphy was dropped to reduce participant burden. Patient rated outcomes were used because that is how the illness is defined. Truly objective outcomes don't exist.
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Oh of course - they didn't and don't see the problem in dropping the objective measures because there are no objective measures for a disease that only exists in the thoughts of the patients.

The more Sharpe tweets, the more it all makes sense (from their point of view/in their paradigm, at least).
 
Lucibee said:
Can I just say that @Tom Kindlon is an absolute legend?

I'm slowly working through his comments, and they are just so well researched and referenced, it's going to make things so much easier.

And I wouldn't have even started on this without @JohnTheJack 's tenacity with the FOI requests.

You guys are just amazeballs!
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Thanks very much. I was very much immersed in the literature then; I'm not quite so much these days so am hoping others like yourself can pick up on issues.
 
Indigophoton said:
Oh of course - they didn't and don't see the problem in dropping the objective measures because there are no objective measures for a disease that only exists in the thoughts of the patients.

The more Sharpe tweets, the more it all makes sense (from their point of view/in their paradigm, at least).
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Yep, they didn't. It's clear from the minutes they dropped it because they didn't know how to collect it properly or analyse it.
See: https://www.s4me.info/threads/pace-trial-tsc-and-tmg-minutes-released.3150/page-20#post-63008
 
Allele said:
Besides presenting that clever soundbite of doublespeak (....To regard CFS as a physical disease would be as great an error as to regard it as a psychological illness",) he also speaks as if there is any proof anywhere that "somatoform" diseases exist at all. The whole argument then rests on the premise that that imaginary-imaginary diseases are a real concept.

The only reason he can speak this way is because academics, educational institutions, clinicians, and laypeople have been willing to adopt the idea that they are without proof, or even question.

This needs to be challenged at that base of a level.
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And this is why MS etc so desperately clings to the idea that PACE is such a wonderful trial. The whole BPS circular argument (religion) is a house of cards whose propped up by the 'fact' that the BPS approach works, and PACE is the fantasy they have clung to as their proof that it works ... except of course that it doesn't, and PACE proves that. If they concede that PACE failed, they concede that the BPS approach is worthless mumbo jumbo, and that that is what they have been spouting all their careers. And all to the detriment of those patients they so profess to care so deeply about.
 
Lucibee said:
You cannot use logical arguments to explain complex multisystem diseases!
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Just a rough parallel to what you say here. In my experience as an engineer over the years, there have been occasions where some very clever engineers have applied all manner of logical rationalisations to some problem needing to be diagnosed, and have got it wrong. The problem with trying to solve tricky problems through logical deduction, is often that the crux of the problem is missing information - information that you do not realise is missing. People bent on the purely logical approach, typically apply their logic on the basis all the information is available, yet it can be the missing information that is key. Logical deduction is fine and relevant, provided it does not arrogantly presume to be the only tool in the toolbox.
 
"Patient rated outcomes were used because that is how the illness is defined we have chosen to define the illness and it suits our purposes better. Truly objective outcomes don't exist undoubtedly exist but we couldn't be bothered trying to find any since it suits our purposes better.
 
Michael Sharpe said:
Patient rated outcomes were used because that is how the illness is defined.
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This comes across as a self-fulfilling fallacy. It is not how the illness is defined, but how MS and the rest of the BPS crowd define it. Then having erroneously defined it so, they then attempted to justify their erroneous outcome measures premised on that erroneous definition. The story being that the "success" of PACE proves how right they are ... except for the small detail that PACE is proving what a failure it is, and so along with that what a failure their illness definition is.

And anyway, no matter how an illness is defined, even for illnesses where the symptoms are almost exclusively subjective (not ME I emphasise), that does not absolve researchers from proactively seeking out objective measures as much as possible, to back up and validate the subjective measures. Symptoms are by no means the only things that can (or should!) be measured; lifestyle and work activities, benefits payments, all manner of more objective measures can be done if the will is there to do it.

As I see it, the will was not there to do it, and is still not. Why not? Goodness knows ... I cannot get my head round the mindset of people who perceive the world and human beings that way.
 
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Michael Sharpe said:
Truly objective outcomes don't exist.
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This seems to be playing with words. "Truly objective"? If by that MS means 100% objective, then he may right - but so what? If you can have measures which are 90-95% objective, that will still be a hell of a lot better than subjective measures alone which have negligible objectivity. It's akin to say "We could not have perfect measures to back up the sh*t ones we wanted to use, so instead of using some really good backup measures that were available, we decided to just use the sh*t ones on their own instead."
 
large donner said:
What actually happened was that halfway through the trial the investigators changed the protocols and dropped objective measures as outcomes
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They dropped actometers for outcomes very early on (after having collected actometer baseline data), but they kept the other objective measures (step test, 6 minute walk distance, employment, welfare use).

However, even the objective measures they did use were relegated to secondary outcomes, and were also downplayed and ignored as much as possible in their handling and reporting of the results.

Dropping actometers for outcomes is a particularly critical technical and ethical failing in my view, as that data would have revealed:

1. Compliance. Were patients were actually increasing their activity levels, particularly in the GET arm where patients may have just been either substituting GET for their usual activity without increasing total activity, or not doing all or even any of the GET program?

2. Correlations between activity levels and the two primary outcome measures (both subjective self-report measures). Given the previously demonstrated lack of correlation for CBT between self-report and actometer measures*, that was a critical correlation for PACE to test. Their failure to do so is one of the greatest in the entire PACE project, IMHO.

* Wiborg, et al.

How does cognitive behaviour therapy reduce fatigue in patients with chronic fatigue syndrome? The role of physical activity

http://journals.cambridge.org/abstract_S0033291709992212

Short version: CBT does not improve activity levels, as measured by actometers (actigraphs).

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Sharpe says:

Actigraphy was dropped to reduce participant burden. Patient rated outcomes were used because that is how the illness is defined. Truly objective outcomes don't exist.
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*cough*

"in the later stages of treatment patients are encouraged to increase their activity (which must ultimately be the aim of any treatment)"

Wessely, David, Butler, & Chalder – 1990

(Note that Chalder is a co-principal investigator with Sharpe on PACE, and Wessely is intimately involved with PACE on many levels.)
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Activity levels are definitely amenable to a range of clear objective measures, and there is absolutely no excuse for not using such measures and giving them (at least) equal status to subjective measures. No ifs or buts about that. Not up for negotiation.

If the objective measures in PACE (and other BPS studies) had shown benefit, and especially if it correlated with patient self-reports, the authors would have been crowing it from the rooftops. And rightly so.

But they didn't deliver on those measures. Not. Even. Close. And they know it.

So instead they try to bury that cold hard ugly little fact, and explain it away when others point it out to them.

Furthermore, as as been pointed out many times before, actometers are a device weighing less than 50g (1.75oz), and are designed to be as unobtrusive and unrestrictive to the wearer as possible. Compare that weight to some common household objects: A pair of my heavy winter socks weighs 136g (4.8oz), a banana about 150g (5.3oz), oven mitts 130g (4.6oz), and my quartz watch is 50g.

To claim that wearing an actometer is a "burden" on patients is so obviously ludicrous an excuse that it is surprising, and more than a little disturbing, they continue trying it on.

I guess they don't have much else.
 
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It was a ludicrous excuse when Tom K. pointed it out to them in comments to the protocol. It's even more ludicrous now that we know definitively that the dropped it after the Dutch decided it wasn't "objective" after all because it didn't match the bogus subjective measures. It is hard to understand why that would be a burden when making people did it at the start and when they didn't drop the six-minute walking test or the fitness test for also being "burdensome." Of course, a quarter of the participants did not provide final data for the six-minute walking test as it is. Perhaps patients found that too burdensome to do--the investigators didn't drop it as a measure, however.
 
Sean said:
a banana about 150g (5.3oz)
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To be fair I think a test to see whether carrying a banana all day and pointing it at the various body parts that hurt and yelling “stop” was part of the original trial design. They dropped it though since they found the burden of resisting eating the said banana was too much pressure on the poor weak minded test subjects ....especially when they were low on potassium.
 
arewenearlythereyet said:
To be fair I think a test to see whether carrying a banana all day and pointing it at the various body parts that hurt and yelling “stop” was part of the original trial design. They dropped it though since they found the burden of resisting eating the said banana was too much pressure on the poor weak minded test subjects ....especially when they were low on potassium.
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I have little doubt that it had nothing to do with the burden but them realizing their house of cards would collapse so they had to save it. In addition to your proposed test I would also support research into what is more difficult to ME/CFS patients 50g watches/ankle bracelets, bananas, oranges, apples or meal replacement shakes, a way to scientifically test Sharpe's claim. :woot:
 
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Alvin said:
In addition to your proposed test I would also support research into what is more difficult to ME/CFS patients 50g watches/ankle bracelets, bananas, oranges, apples or meal replacement shakes, a way to scientifically test Sharpe's claim
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I have always conceptualised 50g as a bar of chocolate. Burdensome? I think not.

100g is a standard block (not family sized).

Perhaps, though, not everyone thinks in chocolate?
 
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