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

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.

 

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.

 

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:

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]

 

And possibly Hofstadter’s Law: “It always takes longer than you expect, even when you take Hofstader’s Law into account.”

 

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.

 

A very valid point.

 

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.

 

Sorry, I might be a bit confused, but could you give more info about this: what showed that patients believed they could overcome their illness in the PACE trial?

 

In general, patients say they tried to push harder to overcome their symptoms.

 

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.

 

But it's not just memories of the time. It's time and time again. Life always seems to get in the way of pacing.

 

And, because the severity is fluctuating for many of us, what was good pacing yesterday is not necessarily adequate pacing tomorrow.

 

That's exactly it!

 

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.

 

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.

 

https://twitter.com/user/status/1110953363385008135

 

https://me-pedia.org/wiki/File:PACEthreshold.jpg



"The average age of participants in the PACE trial is about 39 years old; normative data suggest that people in this age group should have SF-36 scores of about 93. Yet the new 2013 “normal” is a score of 60." Goldin, Rebecca (21 Mar 2016), "PACE: The research that sparked a patient rebellion and challenged medicine", Sense About Statistics (American Statistical Association) (Review of Study Design)

 

https://twitter.com/user/status/1111344664999874565