CORRESPONDENCE The PACE trial of treatments for chronic fatigue syndrome: a response to WILSHIRE et al (2019) Sharpe, Goldsmith & Chalder

Carolyn Wilshire said:
but I wanted to take the scientific high ground by addressing only the science. I feel this strategy may pay better dividends in the long term.
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That is exactly how it reads. It is very thoughtful compared to theirs which reads as though they didn't put much effort in. Given that they are smearing our side as hysterics then a calm response is the only way.

Thank you and everyone involved for your hard work.
 
Carolyn Wilshire said:
Update: since I last wrote there has been much frantic action by the BMC editor to hurry our response through. I don't think there was any intention to the delay,

I do feel much more strongly than what I said in the response, but I wanted to take the scientific high ground by addressing only the science. I feel this strategy may pay better dividends in the long term.
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Sounds like an example of O'Flaherty's Law - That Murphy's Law always applies except when you are expecting it to.

I think the tone was excellent. It points out that each of their anchor points is in sand.
 
Carolyn Wilshire said:
Its pretty softly softly, and I expect some of you might have wished we'd made some points more strongly.
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Not at all. I think the tone is perfect. As I’ve said before, sometimes you need to turn down the volume in order to be heard. And there are some beautifully understated lines. I particularly like the subtle references to Sharpe and colleagues’ beliefs.

This is my favourite bit:
Clearly it is not appropriate to loosen the definition of recovery simply because things did not go as expected based on previous studies. Researchers need to be open to the possibility that their results may not align with previous findings, nor with their own preconceptions. That is the whole point of a trial. Otherwise, the enterprise ceases to be genuinely informative, and becomes an exercise in belief confirmation.
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I also think it is important that you have emphasised that this is about far more than just one trial or even just ME/CFS. As you conclude, PACE has “implications reaching far beyond the illness and treatments under investigation.” Absolutely.

Huge thanks to you and @Tom Kindlon for another excellent piece of work.

I really can’t believe that any disinterested scientist could read this correspondence and not agree with your conclusions.

[Edited to correct my typos in quote]
 
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strategist said:
When the PACE authors write that
We prefer the definitions of recovery we used to those used by Wilshire et al. as they give absolute rates more consistent both with the literature, and with our clinical experience
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I know it's been said one way or another, over and over, but I can't resist.

Can the PACE authors really not see how that marks them out as 3rd rate scientists? That sentence alone should become an educational highlight of why the PACE authors should never have been allowed to run any sort of clinical trial. Good scientists will know that the truth often runs counter to what experience and precedent might seem to show, and is why you need science to follow the evidence, and not the noses of the scientists chasing their tails. (I wish I could draw cartoons!).

A sort-of analogy is when a pilot is flying blind, in fog or darkness. The pilot's sensory mechanisms can get totally fooled, and be convinced is still flying straight and level, whereas they might be in a spiral dive for instance. In such situations they have to stick to the evidence, and fly by instruments, even when that maybe contradicts what their instincts are screaming at them to to do.
 
That patients believed they could overcome their illness by pushing themselves harder to function normally despite the symptoms is also important: it contradicts the narrative of ME as self-fulfilling prophecy.

The insistence that overexertion is harmful is because patients have bad memories from the time when they didn't know better and pushed themselves.
 
Carolyn Wilshire said:
Its pretty softly softly, and I expect some of you might have wished we'd made some points more strongly. I do feel much more strongly than what I said in the response, but I wanted to take the scientific high ground by addressing only the science. I feel this strategy may pay better dividends in the long term.
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I think you and Tom pitched it spot on. Way better to stick to 100% science and let that speak for itself, which it does do louder and clearer than anything else; especially to other scientists. No one can then accuse you using emotive arguments, just scientific ones.
 
Barry said:
I think you and Tom pitched it spot on. Way better to stick to 100% science and let that speak for itself, which it does do louder and clearer than anything else; especially to other scientists. No one can then accuse you using emotive arguments, just scientific ones.
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That's fine and good, but don't forget that Sharpe just smeared the journals that publish such criticism as "campaign journals". We need to keep pushing the likes of The Lancet, BMJ and others to carry the criticisms as well. But the biggest problem is that there is now no effective mechanism for that, because Correspondence is such a woefully ineffective tool.

Unfortunately, scientists are not reading the science. They are listening to the "experts". And without knowing the history and politics, they believe them.
 
Lucibee said:
That's fine and good, but don't forget that Sharpe just smeared the journals that publish such criticism as "campaign journals". We need to keep pushing the likes of The Lancet, BMJ and others to carry the criticisms as well. But the biggest problem is that there is now no effective mechanism for that, because Correspondence is such a woefully ineffective tool.

Unfortunately, scientists are not reading the science. They are listening to the "experts". And without knowing the history and politics, they believe them.
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Agreed. It's worth remembering that what really gives away people's motivations, is not single instances of behaviour, but patterns of behaviour, and it's why such patterns can form such strong evidence in criminal trials etc. These people are leaving hard evidence trails of their patterns of behaviour a mile wide through social media, their articles, responses, even their own papers. Their huge weakness, probably born of arrogance, is that they air their extremely dirty washing in public, and are leaving immutable evidence of it everywhere. When justice is finally done (and I emphasise by that I mean strictly within the rules of law and decency), they will I think truly wish they could just bin it all, but will not be able to.
 
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