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Fit to fight fatigue IT WAS ONCE dismissed as “yuppie flu”, and those who developed it were labelled hypochondriacs. But chronic fatigue syndrome (CFS), sometimes called ME (myalgic encephalomyelitis), is now a recognised

The Times, UK. 2nd February 2004.
“Fit to fight fatigue”. In other words, the #pacetrial.

#myalgicencephalomyelitis #myalgice #cfsme #mecfs.

www.thetimes.com/uk/healthcar...

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#PACEtrial archiving #PACEfail

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Xitter post by Lucibee on 5 Sept 2016: 

Satire: The PIANO trial. 

I've got a great new idea for a trial. I'm convinced that my new typing tutor [program] (which you can buy here [fake link]) is actually a really good way of getting people to be great at playing the piano! 

There are 4 groups in my trial. 

Group 1: Graded Existential Typing - in which I teach people to touch type (until their fingers bleed) and constantly tell them how this will make them an excellent piano player and then [ask them to] rate how they feel about their piano playing. 

Group 2: Cognitive Behavioural Typing - in which I teach people to feel better about their piano playing by using cognitive typing exercises. 

Group 3: Adversarial Piano Technique - in which I tell people that actually they are rubbish at playing the piano. 

Group 4: Specialised Modifying Tactic - in which I teach them how to knit instead. 

At the end of the trial, we measure how everyone rates their piano playing. 

We found that those in groups 1 and 2 rated their piano playing as much better than those in the other groups. 

We were going to actually measure their real piano playing ability, but felt that objective measures of piano playing were not as good as subjective measures of piano playing (and they didn't show any difference between the groups so we ditched them). 

Conclusion: Teaching people to touch type improves their piano playing.

Xitter post by Lucibee on 5 Sept 2016: Satire: The PIANO trial. I've got a great new idea for a trial. I'm convinced that my new typing tutor [program] (which you can buy here [fake link]) is actually a really good way of getting people to be great at playing the piano! There are 4 groups in my trial. Group 1: Graded Existential Typing - in which I teach people to touch type (until their fingers bleed) and constantly tell them how this will make them an excellent piano player and then [ask them to] rate how they feel about their piano playing. Group 2: Cognitive Behavioural Typing - in which I teach people to feel better about their piano playing by using cognitive typing exercises. Group 3: Adversarial Piano Technique - in which I tell people that actually they are rubbish at playing the piano. Group 4: Specialised Modifying Tactic - in which I teach them how to knit instead. At the end of the trial, we measure how everyone rates their piano playing. We found that those in groups 1 and 2 rated their piano playing as much better than those in the other groups. We were going to actually measure their real piano playing ability, but felt that objective measures of piano playing were not as good as subjective measures of piano playing (and they didn't show any difference between the groups so we ditched them). Conclusion: Teaching people to touch type improves their piano playing.

More #PACEtrial archiving...

The PIANO trial...

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Preview
PACE trial: Tiptoeing around the Step Test A couple of months ago, I looked at the issue (and lack) of actigraphy in the PACE trial. Another objective measure used in the trial was a step test, which was used to assess the fitness of partic…

And this is the blog post that arose from this (July 2018), where I looked at the fitness test (or step test) and the mysterious James/Petrella equation conundrum.
#PACEtrial #PACEfail

lucibee.wordpress.com/2018/07/06/p...

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Lucibee thread - Apr 6, 2018

The more I poke, the more bits fall off.
#PACEtrial
#factfulness 

This time I poked the fitness test, one of the few "objective" measures they used. They reported that they had used a version of the test by Petrella et al., but then quoted a different equation in their supplementary data. #PACEfail 

None of the fitness equations had been validated in their patient population. 

Looking closely at the paper they cited, the population studied was healthy older adults. When this study included unhealthy people, it stopped being a good estimate of VO2max. #PACEfail

And the equation they said they used gives very different results from those they actually quoted in their fitness graph in the only paper they reported them in (mediation analysis). #PACEfail

So I have absolutely no idea exactly what they did do, because they didn't report it properly. Given that the authors themselves had concerns about the fitness testing (it reportedly caused harm to pts), this is problematic. #PACEfail

Lucibee thread - Apr 6, 2018 The more I poke, the more bits fall off. #PACEtrial #factfulness This time I poked the fitness test, one of the few "objective" measures they used. They reported that they had used a version of the test by Petrella et al., but then quoted a different equation in their supplementary data. #PACEfail None of the fitness equations had been validated in their patient population. Looking closely at the paper they cited, the population studied was healthy older adults. When this study included unhealthy people, it stopped being a good estimate of VO2max. #PACEfail And the equation they said they used gives very different results from those they actually quoted in their fitness graph in the only paper they reported them in (mediation analysis). #PACEfail So I have absolutely no idea exactly what they did do, because they didn't report it properly. Given that the authors themselves had concerns about the fitness testing (it reportedly caused harm to pts), this is problematic. #PACEfail

Thread continues (Apr 6, 2018): 

When a colleague tried to obtain the data for the fitness test, his request was deemed "vexatious".
I can now see why. They were probably too embarrassed to release it! #PACEfail 

[colleague was Graham McPhee]

So not only did they use unreliable subjective measures in an unblinded trial, they also used unreliable objective measures too. #PACEfail

And @TheLancet
 FastTracked this paper too. 
#PACEfail

Mediation paper was published in @TheLancetPsych 
Fitness data criticised here by Bob... http://thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00054-1/fulltext 

Mediation analysis cannot be used to confirm a theory. You have to be damn sure that your theory is correct before you use it, because it won't tell you otherwise. #confirmationbias
But it can disprove it if the objective measures drop out. Which they did.
#PACEfail

Ref: "If the presumed causal model is not correct, the results from the mediational analysis are likely of little value."  http://davidakenny.net/cm/mediate.htm

Thread continues (Apr 6, 2018): When a colleague tried to obtain the data for the fitness test, his request was deemed "vexatious". I can now see why. They were probably too embarrassed to release it! #PACEfail [colleague was Graham McPhee] So not only did they use unreliable subjective measures in an unblinded trial, they also used unreliable objective measures too. #PACEfail And @TheLancet FastTracked this paper too. #PACEfail Mediation paper was published in @TheLancetPsych Fitness data criticised here by Bob... http://thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00054-1/fulltext Mediation analysis cannot be used to confirm a theory. You have to be damn sure that your theory is correct before you use it, because it won't tell you otherwise. #confirmationbias But it can disprove it if the objective measures drop out. Which they did. #PACEfail Ref: "If the presumed causal model is not correct, the results from the mediational analysis are likely of little value." http://davidakenny.net/cm/mediate.htm

The whole idea that you can use a trial or mediation analysis to prove your theory correct doesn't make any sense. If that were so, then we would still think that scurvy is caused by a bacterium that is killed by the acid in lime juice.

Bookmarking... SMC [Science Media Centre] on mediation analysis paper:

The whole idea that you can use a trial or mediation analysis to prove your theory correct doesn't make any sense. If that were so, then we would still think that scurvy is caused by a bacterium that is killed by the acid in lime juice. Bookmarking... SMC [Science Media Centre] on mediation analysis paper:

More archiving...

This time, #PACEtrial mediation analysis (because it's on my mind).

Xitter thread from 6 April 2018.

"The more I poke, the more bits fall off.
#PACEtrial
#factfulness"

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Preview
David J Black: Cherchez la shrink It seems odd that a psychiatrist once described in a Times interview with Stephanie Marsh as "the most hated doctor in Britain" should suddenly become the most all-powerful doctor in that very same be...

Given the news that W☠️ssely threatened to sue Emily Mendenhall author of "Invisible Illness", it's not at all surprising that David J Black's long awaited book on
#ME the #PACETrial & the BPS Cabal hasn't been published
Here's his '23 blog post on SW
www.scottishlegal.com/articles/dav...

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Who wants to tell @slate.com

#PACETrial
#MyalgicEncephalomyelitis
#MEcfs
#pwME
#MillionsMissing
#GreatestMEdicalScandal

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For those not in the know, the #PACEtrial committed scientific misconduct by changing the goalposts after data was collected & fought tooth and nail not to release the data for reanalysis (a big scientific red flag, that)

Subsequent reanalysis showed comprehensively the original paper was bollocks

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Screenshot of abstract

Screenshot of abstract

9-year anniversary of reanalysis paper on recovery in £5m #PACEtrial, with data the PACE team fought so hard to keep to themselves.

Shows recovery rates in all trial arms were low, using the criteria the PIs promised in their own protocol

tandfonline.com/doi/full/10....

#MEcfs #CFS

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Preview
PACE trial: Whatever happened to actigraphy? In my first blog about the PACE trial, I discussed the lack of objective measures, and the bothersome issue of not knowing how much participants actually managed to increase their activity, because…

10/ A major flaw of the #PACEtrial was that they didn't actually measure how much participants increased their activity in the GET group.

I looked at that in a blog I wrote a few years ago:

Whatever happened to actigraphy.

lucibee.wordpress.com/2018/05/09/p...

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7/ But then they run into difficulties with trial methodology.

How do you make sure that everyone receives the same treatment if an intervention is individualised?

Well, that's an issue. And we don't know, because we can't see how much GET each ppt received in the #PACEtrial.

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5/ But the #PACEtrial manuals make it clear that it is not the increases ("fixed" or otherwise) that is important but that:

"A central concept of GET is to MAINTAIN exercise as much as possible during a CFS/ME setback."

This is what is so damaging.

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4/ This gives those who wish to distort the argument, ample room to shift their meaning whenever it suits them.

Even in the #PACEtrial itself this is clear.

GET is defined as "negotiated, incremental increases" in exercise duration.

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@chrischirp.bsky.social and @martinmckee.bsky.social the Science Media Centre would also be worth assessing. They have disseminated misinformation about people with #MEcfs for years. @davetuller1.bsky.social and @georgemonbiot.bsky.social have written about it.

#GreatestMEdicalScandal #PACEtrial

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“… how systems keep people poor while pretending it’s their own fault”

This is the epitome of how disabled people are treated by the UK government.

#TakingThePIP #Disability #SevereME #ME/CFS #LongCovid #PACEtrial #JusticeForME #GreatestMEdicalScandal

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From the European Association Of Psychosomatic Medicine (EAPM) Conference in Munich (10-13th Sept 2025)

#GreatestMEdicalScandal #PACEtrial #pwME

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@actionforme.bsky.social @meassociation.org.uk Can this help the UK Elsevier Kumar & Clark textbook debacle? Surely they can’t maintain it’s fine when US Elsevier publish *actual science*?!

FYI to #pwME… Peter White, #PACEtrial lead, authors the ME section of Kumar&Clark(!)

#GreatestMEdicalScandal

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Trick and Maltreatment
#PaceTrial

www.scottishlegal.com/articles/dav...

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#ME/CFS #LongCovid #severeME #PACEtrial

@tessamunt.bsky.social
@helenmorganlibdem.bsky.social
@joplatt.bsky.social

Thank you for your support. Just flagging as this is the kind of thing people with ME & L Cov have to endure on what seems like a weekly basis – there is always something heinous.

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There’s no end to DWP cruelty and injustice.

How are people with #MECFS and #LongCovid supposed to comply when the NHS refuses to accept their illnesses are physiological and not all in the mind, and ignores the irrefutable scientific proof of that?

#TakingThePIP #GreatestMEdicalScandal #PACEtrial

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… Fluctuating conditions like #LongCovid and #MECFS which the government are aware was – and still is – one of the biggest mass disabling events in history.

And guess who funded the fraudulent #PACEtrial – oh that’s right, the DWP.

#GreatestMedicalScandal #TakingThePIP #DisabilitySOS

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It was bad enough getting #MECFS in my 30s, I can’t imagine getting it or #LongCovid between ages 10-19 – the loss of even more years of life and experiences is hard to imagine.

#StopRestPace #ThereForME #MillionsMissing #LongCovidKids
#GreatestMedicalScandal #PACEtrial

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They desperately need one into the #PACEtrial #GreatestMEdicalScandal

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Not the first time a Labour government has tried to use IAPT as a miracle cure #pacetrial #myalgicencephalomyelitis

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...and he still doesn't regard the #pacetrial as 'bad science', even though NICE ditched it.

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The authors of the infamous #PACEtrial for #MECFS have argued that the graded exercise they promote does not use fixed increments. Vink et al.: “Our analysis of […] the PACE trial’s GET manual for therapists exposes the fixed incremental nature of GET.”

www.mdpi.com/2075-1729/15...

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Post image

The Oxford Mail, England. 26th March 2018.
The #PACEtrial gets criticism and a sufferer in Oxford welcomes that criticism. @davetuller1.bsky.social

#myalgicencephalomyelitis #cfsme #myalgice #myalgice

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Correspondence
Open access
Published: 26 March 2019
Response: Sharpe, Goldsmith and Chalder fail to restore confidence in the PACE trial findings
Carolyn E. Wilshire & Tom Kindlon 
BMC Psychology volume 7, Article number: 19 (2019) Cite this article

A Research article to this article was published on 22 March 2018

Abstract
In a recent paper, we argued that the conclusions of the PACE trial of chronic fatigue syndrome are problematic because the pre-registered protocol was not adhered to. We showed that when the originally specific outcomes and analyses are used, the evidence for the effectiveness of CBT and graded exercise therapy is weak. In a companion paper to this article, Sharpe, Goldsmith and Chalder dismiss the concerns we raised and maintain that the original conclusions are robust. In this rejoinder, we clarify one misconception in their commentary, and address seven additional arguments they raise in defence of their conclusions. We conclude that none of these arguments is sufficient to justify digressing from the pre-registered trial protocol. Specifically, the PACE authors view the trial protocol as a preliminary plan, subject to honing and improvement as time progresses, whereas we view it as a contract that should not be broken except in extremely unusual circumstances. While the arguments presented by Sharpe and colleagues inspire some interesting reflections on the scientific process, they fail to restore confidence in the PACE trial’s conclusions.

Correspondence Open access Published: 26 March 2019 Response: Sharpe, Goldsmith and Chalder fail to restore confidence in the PACE trial findings Carolyn E. Wilshire & Tom Kindlon BMC Psychology volume 7, Article number: 19 (2019) Cite this article A Research article to this article was published on 22 March 2018 Abstract In a recent paper, we argued that the conclusions of the PACE trial of chronic fatigue syndrome are problematic because the pre-registered protocol was not adhered to. We showed that when the originally specific outcomes and analyses are used, the evidence for the effectiveness of CBT and graded exercise therapy is weak. In a companion paper to this article, Sharpe, Goldsmith and Chalder dismiss the concerns we raised and maintain that the original conclusions are robust. In this rejoinder, we clarify one misconception in their commentary, and address seven additional arguments they raise in defence of their conclusions. We conclude that none of these arguments is sufficient to justify digressing from the pre-registered trial protocol. Specifically, the PACE authors view the trial protocol as a preliminary plan, subject to honing and improvement as time progresses, whereas we view it as a contract that should not be broken except in extremely unusual circumstances. While the arguments presented by Sharpe and colleagues inspire some interesting reflections on the scientific process, they fail to restore confidence in the PACE trial’s conclusions.

Today is 6th anniversary of publication of this rejoinder.

Free here: bmcpsychology.biomedcentral.com/articles/10....

The more important paper is initial paper which included re-analyses of £5m #PACETrial results.

Free here: bmcpsychology.biomedcentral.com/articles/10....

#MEcfs #CFS

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”It is only human for doctors to view the public as foolish, uncomprehending, hysterical or malingering”

Prof Sir Simon Wessely

blacktrianglecampaign.org/dwpunumatos-...

#PACEtrial

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