Michael Sharpe skewered by @JohntheJack on Twitter

Edwards R. is revealing something about the way they see themselves by making a comparisons to religious explanations for ill health.

 

Some more of the ongoing conversation, for those not on Twitter. https://twitter.com/user/status/985585182504898562


And @Adam pwme has been blocked,
https://twitter.com/user/status/985614528418328577

 

https://twitter.com/user/status/985844903358935040

 

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).

 

Do you maybe have a link or so for the entire text? Something to save for later.

 

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.

 

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

 

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.

 

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.

 

Some of this has been posted but here are my recent exchanges with Prof Sharpe:

https://twitter.com/user/status/982972760602349568

https://twitter.com/user/status/983744246795685888

https://twitter.com/user/status/983825140424245249

 

And this is another thread:

https://twitter.com/user/status/985581062842716160

https://twitter.com/user/status/985835374588121091

https://twitter.com/user/status/985837752250925056


I will try to get him to answer some of the unanswered questions.

 

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.

 

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."

 

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.

 

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.

 

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.

 

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?

 

Chocolate is a clever way to think of it. Most people also like chocolate