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PACE trial claims of recovery are not justified by the data: A Rejoinder to Sharpe et al.

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Tom Kindlon

Senior Member
Messages
1,734
https://twitter.com/i/web/status/844487836573319168

Sally K Burch shared your post.
11 hrs ·
Phenomenal work by Carolyn Wiltshire, Tom Kindlon-pwme and Simon McGrath. Straight forward writing that completely shreds the PACE conclusions.

In my view, the PACE authors' earlier defence of of their trial now looks like obfuscating bluster.

My favourite quote from Tom et al's paper: "Since doctors and patients will understand recovery in its common meaning of a return to good health, we are correct to say that: PACE's published recovery figures will mislead them."

Yup ... that's it. PACE outcomes are misleading - is there anything else we really need to know? I'm printing this. I have a meeting coming up with my MP and he will see this. THANK YOU to all involved. xx
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https://www.facebook.com/keela.too.9/posts/810368355779064
 
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Tom Kindlon

Senior Member
Messages
1,734
Just collating some comments from Facebook for @Simon . I'll also direct Carolyn here in case she has time to look at the thread.

Thanks for the work that you & the team did on replying to the PACE researchers. It is beyond me how they had the gall to publish "findings" that have so many holes they resemble a colander!!!!
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Love this. Tom et al reply back to the PACE PIss after the PACE PIs responded to their re-analysis paper of an original PACE paper. Yes ..it's like a Babushka Doll..and I'd bet on there being a few more layers yet!

(I left the typo..seemed apposite ;) ).

https://www.researchgate.net/public...arpe_Chalder_Johnson_Goldsmith_and_White_2017
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Remember this was funded by the UK Government Department for Work and Pensions. Hypothetically, if people with m.e recovered, they could come off benefits and work. This research suggested people could recover.
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This is an easy to read paper that basically destroys the evidence base for GET & CBT. Powerful reading.

It's actually a reply to a reply, to a paper critisising the PACE trial, but ignore all that as it is a powerful piece in it's own right. Go Tom Kindlon-pwme

https://www.researchgate.net/public...arpe_Chalder_Johnson_Goldsmith_and_White_2017
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Please folks take a look at this. Consider printing it out. It totally destroys the evidence base for GET and CBT as therapies for ME.
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Karen Kirke

Messages
48
Brilliantly and clearly argued. Thank you, Wilshire, Kindlon and McGrath, and thinking of Alem Mathees. The inordinate price he is paying for his efforts is why this work is so important. It will be a good day when treatments for ME/CFS treat PEM, rather than induce it.
 
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Tom Kindlon

Senior Member
Messages
1,734
A couple of more comments I received:
I thoroughly enjoyed your rejoinder to Sharpe et al with Wilshire and McGrath. Their response to your original paper was breath-taking in its inadequacy. I thought you did a superb job of highlighting the logical flaws in their arguments, and of supporting your own with convincing evidence – I particularly enjoyed the section on verbal encouragement on p.4.
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This is an excellent write up replying to Sharpe et al.

Well written, takes apart each point they made or failed to make and puts it right back at them.

Bravo to you all.
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Tom Kindlon

Senior Member
Messages
1,734
https://twitter.com/i/web/status/845429160982073346

Wilshire Kindlon.png
 
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Tom Kindlon

Senior Member
Messages
1,734
Tom Kindlon said:
Just collating some comments from Facebook for @Simon . I'll also direct Carolyn here in case she has time to look at the thread.
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This is an excellent piece of work. It was crucial to make the problems crystal clear, because it is so easy for the lay person to miss the point(s). This paper is so clear that anyone could understand what has occurred, and why it is indefensible.
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HowToEscape?

Senior Member
Messages
626
I have not the energy nor morale to read the PACE study, but ...

WT &^$% does a six-minute walking test have to do with this disease? This is not a disease measured by the ability to imitate James Watt's horse, even a pico-horse. When we're exhausted, we won't be able to show up for the test, if not crashed, we can drag ourselves through a short walk even in a moderately severe state, but the next day ....

What occupation or essential life task can a person complete in six minutes, with no further standing, walking or cognition after? Where is the test for brain fog? The 6m test seems to be designed as a diversion, a test more or less anyone with 1.5 legs and a pulse can pass. It's nearly orthogonal to both activities that knock us out and to activities necessary for an average life.

Personally, I've found that for over 10 years since hitting this wall the most harmful activities involve simply being out of the apartment for a few hours, more than 15 minutes of moderate outdoor heat, etc etc. IOW, attempting normal life.
A brief burst of energy output has much milder consequences; it's also useless for anything other than recording ergs on some piece of PT gear.
 
Cheshire

Cheshire

Senior Member
Messages
1,129
https://twitter.com/i/web/status/850170497232912384

The last part is the more revealing. Let's say this theory has some ground: the fact that some patients can get disabled because of fearfull cognition doesn't mean that this process can explain all that medical science does not understand yet. That's the whole problem. These extreme examples are used to fill the gaps of knowledge without checking if it matches with the patients reality.

Poor logic, that 1st year philosophy students would reject: if people can get disabled because of poor coping, then all unexplained cases of disability are due to poor coping.
 
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RogerBlack

Senior Member
Messages
902
Chrisb said:
Can anyone enlighten me as to what a "fearful cognition" might be, and how it might be distinguished from "fear"?
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Fear is a symptom which may be objectively justified. 'I just saw PD White'.

Fearful cognition is a disordered pattern of thoughts looping on themselves to concentrate on the fear and make it worse, disconnected from objective reality. (there is no current immediate danger to worry about).

The idea is that CBT may help with this.
 
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Chrisb

Senior Member
Messages
1,051
@RogerBlack Sorry Roger, I was probably being a little disingenuous. As whoever it was who made the original comments was complaining about "shameful language", I thought that "fearful cognition" does not deserve a place in any language with which I am familiar. It is clearly intended to mean something other than what it says.
 
Jonathan Edwards

Jonathan Edwards

"Gibberish"
Messages
5,256
There was certainly something unpleasant in the tone of the article to which Wilshire et al are responding. There is also something unpleasant in the tone of the reviewer's comments. There was something unpleasant about White's presentation in Bristol at the CMRC. There is something very unpleasant about PACE supporters ringing up the employers of PACE critics, presumably in an attempt to dislodge them from their employment. There is no doubt where the unpleasantness lies. The obsession is on the part of those trying to defend a very bad study come what may. And that would not be an obsession in the psychiatric sense because in the psychiatric sense there is by definition a sense of guilt with it.
 
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