Tweets from Richard Horton on 17 February 2011: Tomorrow we publish the PACE trial, a study showing the benefits of CBT and Graded Exercise Therapy for CFS. But, we are in trouble. The ME Association has released a statement deploring the paper (while admitting it hasn't seen a copy). Why? Because the work does not... ...adopt a biomedical model for CFS. The ME Association argues that CFS is a complex multisystem disease, not a cognitive problem. Thus... ...we are the enemy. But surely any evidence of treatment benefit has to be good news. Apparently not. Which begs the question: just what... ...is the purpose of the MEA? To object to rigorous research findings because they challenge fixed assumptions? A disservice to patients.

As can be seen here:

#PACEtrial #HortonTweets

#PACETrial #AleemMathees #FoI #FoIVictory #landmarkpaper #gradedexercise #CBT #mecfs #MyalgicEncephalomyelitis #SevereME
@tomkindlon.bsky.social

DISCUSSION: Continuing Correspondence, Countess of Mar and Prof White and Prof Sir S Wessely Continuing Correspondence Between Countess of Mar and Prof Peter White and Prof Sir Simon Wessely http://www.meactionuk.org.uk/Reply-to-PDW-and-Sir-Simon.htm Professor Peter White has respon...

It seems I was not the only one talking about Bleijenberg and Knoop... #PACEtrial

forums.phoenixrising.me/threads/cont...

Translated tweet from Martin Rucker on X: "Since calls for retraction of the PACE trial are getting loud again: The journal, The Lancet, informed me of this at the beginning of 2023 as a brief statement on the criticism of the study and the demands. #MECFS In the linked editorial, the journal defends the 2011 study." Image shows text: Here is a response from The Lancet Group to your enquiry: "The Lancet Group sets extremely high standards for publishing, and we are committed to ensuring that our editorial processes meet our standards of excellence. The 2011 PACE article was published following independent, external peer-review. Scientific discussion and debate are an important part of the scientific process, and the Lancet journals welcome responses from readers and the wider scientific community to content published in the journals. "You can see the Editorial we published in response to the concerns around PACE in 2011 here [link], along with eight Correspondences and the author's reply in the Linked Articles [link] section."

The Lancet claims that the peer review process for the #PACEtrial was "independent".

But I had other suspicions: lucibee.wordpress.com/2020/07/21/a...

Having worked in journal publishing, and at The Lancet itself, I sort of know how these things work!

This was such an important paper, and I was dismayed when it did not have the impact that I hoped it would.

But unfortunately, that is the way it usually goes for post-publication "debate", when the vested interests are in bed with the journals.

#PACEtrial

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 7th 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

R E S E A R C H A R T I C L E Open Access Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT Carolyn E. Wilshire 1* , Tom Kindlon2 , Robert Courtney3 , Alem Matthees 4 , David Tuller 5 , Keith Geraghty 6 and Bruce Levin 7 Abstract Background: The PACE trial was a well-powered randomised trial designed to examine the efficacy of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for chronic fatigue syndrome. Reports concluded that both treatments were moderately effective, each leading to recovery in over a fifth of patients. However, the reported analyses did not consistently follow the procedures set out in the published protocol, and it is unclear whether the conclusions are fully justified by the evidence. Methods: Here, we present results based on the original protocol-specified procedures. Data from a recent Freedom of Information request enabled us to closely approximate these procedures. We also evaluate the conclusions from the trial as a whole. Results: On the original protocol-specified primary outcome measure - overall improvement rates - there was a significant effect of treatment group. However, the groups receiving CBT or GET did not significantly outperform the Control group after correcting for the number of comparisons specified in the trial protocol. Also, rates of recovery were consistently low and not significantly different across treatment groups. Finally, on secondary measures, significant effects were almost entirely confined to self-report measures. These effects did not endure beyond two years. Conclusions: These findings raise serious concerns about the robustness of the claims made about the efficacy of CBT and GET. The modest treatment effects obtained on self-report measures in the PACE trial do not exceed what could be reasonably accounted for by participant reporting biases. Keywords: Chronic fatigue syndrome, Myalgic ence

It's 8th anniversary of this paper

A lot of it was only possible due to Alem's heroic FOI victory, which the #PACETrial team fought so hard to stop. That surely wasn't because the real results weren't as flattering as they had presented them?

bmcpsychology.biomedcentral.com/articles/10....

#MECFS

Screenshot of abstract and title

Today is 9-year anniversary of this rejoinder, where we defend our recovery reanalysis paper which found no difference in rates of recovery from #CFS with graded exercise therapy or CBT vs specialist medical care-alone group in £5m #PACEtrial

Free: researchgate.net/publication/...

#MEcfs #PwME

o graded activity therapies cause harm in chronic fatigue syndrome? Tom Kindlon tomkindlon@hotmail.comView all authors and affiliations Volume 22, Issue 9 https://doi.org/10.1177/1359105317697323 Contents PDF/EPUB Cite Share options Information, rights and permissions Metrics and citations Abstract Reporting of harms was much better in the PACE (Pacing, graded Activity, and Cognitive behavioural therapy: a randomised Evaluation) trial than earlier chronic fatigue syndrome trials of graded exercise therapy and cognitive behavioural therapy. However, some issues remain. The trial’s poor results on objective measures of fitness suggest a lack of adherence to the activity component of these therapies. Therefore, the safety findings may not apply in other clinical contexts. Outside of clinical trials, many patients report deterioration with cognitive behavioural therapy and particularly graded exercise therapy. Also, exercise physiology studies reveal abnormalities in chronic fatigue syndrome patients’ responses to exertion. Given these considerations, one cannot conclude that these interventions are safe and risk-free.

It's 9-year anniversary of this paper of mine. It could be useful if somebody feels coerced into doing graded activity or exercise programmes; also to counter claims that the #PACEtrial showed graded activity programs are safe.

journals.sagepub.com/doi/full/10....

#MEcfs #CFS #MyalgicE #CBT

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...

#PACEtrial archiving #PACEfail

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...

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...

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

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"

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...

Who wants to tell @slate.com

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

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

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

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...

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.

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.

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.

@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

“… 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

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

#GreatestMEdicalScandal #PACEtrial #pwME

@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

Trick and Maltreatment
#PaceTrial

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

#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.

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

… 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