The discussions reveal a collective pushback against the flawed interpretation and influence of the PACE trial, with examples like references to independent reanalyses, FOI revelations, and critiques of subjective measures. The tone is critical yet evidence-driven, emphasizing the trial’s methodological issues and long-lasting impact on treatment approaches for ME/CFS.
AgreementStrong agreement
Most comments strongly agree that the PACE trial's findings are flawed or misleading, emphasizing the need for reanalysis, and highlighting the harm caused by the original conclusions.
InterestHigh interest
Discussions demonstrate high curiosity and concern, with many references to reanalyses, critiques, and the need for objective measures, indicating deep engagement with the topic.
EngagementHigh engagement
Posts show substantial involvement, with references to specific studies, FOI requests, reanalyses, and detailed criticisms, reflecting a thorough exploration of research flaws.
ImpactHigh impact
Many posts argue that the trial influenced medical guidelines, treatments, and ongoing practices, and that its misrepresentations have caused harm, indicating significant societal and clinical implications.
Abstract in brief
The PACE trial, which studied graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for chronic fatigue syndrome, claimed both were effective, but its analysis methods were inconsistent with the original protocol, raising questions about the validity of its conclusions.
Reanalysis using the original procedures showed that neither treatment significantly outperformed the control group in overall improvement or recovery rates, with benefits mostly limited to self-report measures that did not last beyond two years.
These findings challenge the claims of the trial, suggesting that the supposed benefits of CBT and GET may be overstated and could be influenced by participant reporting biases rather than clear, sustained clinical improvements.
.back then I requested access to PACE data, this was rejected, a brave persistent ME patient in Australia took PACE author's host Uni to a FOI Tribunal and won case, opening up PACE to re-analysis here: revealing massive drop in reported benefits https://t.co/5IKsyPCH2H
Mar 27, 2022 · 66 likes · 10 shares · 8,584 followersView post →
TK
Tom Kindlon
@tomkindlon.bsky.social · Bluesky
It's 7th 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
@gregggonsalves This important story needs to be told because a harmful #MECFS treatment continues to be prescribed based on the debunked PACE trial.
Now many ppl w #LongCovid are also being harmed.
https://t.co/4oRPyieGPG
Oct 25, 2023 · 24 likes · 5 shares · 1,521 followersView post →
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Dr Keith Geraghty
@keithgeraghty · X
Crawley paper compares NHS CBT-GET clinic data v PACE trial - but we have sub. analysis that shows true failure of PACE trial (in fact we see true pattern that trials and clinics can not get most ME/CFS patients back to normal SF36 physical function) https://t.co/5IKsyPC9d9
You believe chronic fatigue syndrome or ME/CFS is untreatable? Recent research identifies key mechanisms like leaky gut, mitochondrial dysfunction, and immune issues, suggesting personalized therapies could offer hope…
Chronic fatigue is increasing, especially among young women. This educational video discusses root causes such as trauma, gut issues, hormonal imbalance, and abuse, highlighting naturopathic treatments like lifestyle…
May 30, 2025 · 3 likes · 3,879 followersView post →
TK
Tom Kindlon
@tomkindlon.bsky.social · Bluesky
It's 7th 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
@CFSCounselling CBT & exercise rehab (GET/GAT/PT) no better than placebo for patients with ME/cfs.
When objective measures are used, they indicate no significant benefit. Most clinics ignore or inconsistent record of harm. More effective treatments are needed.
https://t.co/7nxA53OHLP
@janeclout He references this excellent article by @davidtuller1 and others and clearly knows and respects his work.
https://t.co/acX6BySiDo
Mar 12, 2024 · 6 likes · 1,512 followersView post →
TC
Tim C
@TimC_syd · X
@LarissaMVLopez @jejquade @KSchnickelfritz @Peston PACE trial reanalysis:
"Using the protocol-specified definition of recovery, and applying an intention-to-treat approach, the rates of recovery were 7%, 4% and 3% for the CBT, GET and Control groups respectively.." Not stat sig recovery, just bias/placebo.
https://t.co/7nxA53OHLP
@ZacharyGrinDPT @sfadigacronica @cfs_research @KH118118 Edited quotes abive to fit X, from
"Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT"
https://t.co/7nxA53OHLP
RT @MMissingAus: @gregggonsalves This important story needs to be told because a harmful #MECFS treatment continues to be prescribed based…
Oct 30, 2023 · 5 shares · 1,064 followersView post →
BH
Billy Hanlon
@bhanlon15 · X
RT @MMissingAus: @gregggonsalves This important story needs to be told because a harmful #MECFS treatment continues to be prescribed based…
Oct 29, 2023 · 5 shares · 13,820 followersView post →
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janna
@jan_nahlinke · X
RT @MMissingAus: @gregggonsalves This important story needs to be told because a harmful #MECFS treatment continues to be prescribed based…
Oct 26, 2023 · 5 shares · 690 followersView post →
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M. and S. Shaw
@twoShaws · X
RT @MMissingAus: @gregggonsalves This important story needs to be told because a harmful #MECFS treatment continues to be prescribed based…
Oct 26, 2023 · 5 shares · 1,629 followersView post →
MS
#MillionsMissing Aus @mmissingaus.bsky.social
@MMissingAus · X
@gregggonsalves This important story needs to be told because a harmful #MECFS treatment continues to be prescribed based on the debunked PACE trial.
Now many ppl w #LongCovid are also being harmed.
https://t.co/4oRPyieGPG
Oct 25, 2023 · 24 likes · 5 shares · 1,521 followersView post →
@MicrobiomDigest @ivanoransky @hholdenthorp .., delay/hide reporting harm's or fail to collect harm info; ignore researcher COI; uncontrolled controls or waiting list as control so placebo can't be rulled out, ...?
Yet publications like the PACE trial (White et al, 2011) remain unretracted.
Eg.
https://t.co/7nxA53OHLP
@_katie_potatie_ @Bridget_OShea @grace_huckins @loscharlos @VirusesImmunity @Slate Here are more reviews & studies showing that CBT is ineffective for ME/CFS (& presumably for ME from LC; note that CBT is usually studied with GET):
* https://t.co/5Nr9vzh86i
* https://t.co/qrhGlZWy8i
* https://t.co/gwHGpwjO83
* https://t.co/kNbtaxAWp3
* https://t.co/xtHfzRR02M
Jun 27, 2023 · 3 likes · 1 share · 1,574 followersView post →
@nataliesurely @coco_chatel It’s gusto if you don’t cite subsequent studies and analyses that debunked the findings https://t.co/xpRZw42WbC
https://t.co/uZqSSLSTVd
https://t.co/VH3JlGGDEa
https://t.co/EB283UafGD
Etc.
Not event “hotly contested”?
Feb 4, 2023 · 5 likes · 9,828 followersView post →
FM
Fen, MD
@FvRhijn · X
@kidney_boy Yeah in the DECREASE IV it was fraud - but AFAIK the PACE trial is just bad and not made-up. Somehow we as a medical community keep giving credence to graded exercise therapy based on the PACE, despite the re-analysis.
https://t.co/vPUOI89JKQ
Jan 11, 2023 · 2 likes · 4,046 followersView post →
BH
Bjørn Holmøy
@HolBjo · X
@KristianGunder @BigMuffPI Tja, er vel ikke en myte at den mest siterte og innflytelsesrike studien på CBT og gradert trening for ME (PACE-studien) har mistet kredibilitet.
https://t.co/MoYHsoWmVF
RT @jifoulger: @StenHelmfrid @nataliesurely @newrepublic These findings raise serious concerns about the robustness of the claims made abou…
Dec 9, 2022 · 1 share · 2,369 followersView post →
IA
Irish ME/CFS Association
@IrishMECFSAssoc · X
RT @TimC_syd: @newrepublic @nataliesurely "Using the protocol-specified definition of recovery, and applying an intention-to-treat approach…
Dec 9, 2022 · 3 shares · 2,574 followersView post →
JF
James Foulger
@jifoulger · X
@StenHelmfrid @nataliesurely @newrepublic 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 PACE https://t.co/1sOU65B1mW
Dec 9, 2022 · 6 likes · 1 share · 2,141 followersView post →
TK
Tom Kindlon
@TomKindlon · X
RT @TimC_syd: @newrepublic @nataliesurely "Using the protocol-specified definition of recovery, and applying an intention-to-treat approach…
Dec 9, 2022 · 3 shares · 15,262 followersView post →
TC
Tim C
@TimC_syd · X
@newrepublic @nataliesurely "Using the protocol-specified definition of recovery, and applying an intention-to-treat approach, the rates of recovery were 7%, 4% and 3% for the CBT, GET and Control groups respectively."
https://t.co/7nxA53OHLP
These subjective benefits are not significantly better than ctrl.
Dec 9, 2022 · 3 likes · 3 shares · 621 followersView post →
@karstenlucke @iqwig dieses Symptom teilnehmen. Außerdem haben diese Studien auch einige andere Probleme, siehe z.B. https://t.co/c72zprcfKi
Der IQWIG Bericht sollte Klarheit schaffen und Patienten vor Schaden schützen, nicht alte Fehler fortsetzen. /2
Nov 27, 2022 · 20 likes · 14,454 followersView post →
VJ
Veronica Jones
@Forestvon · X
RT @TimC_syd: @Aslaug_Linnea @bmkrohn1 @ErlingSvensen Some PACE data has been reanalysed independently the best way they could considering…
Nov 26, 2022 · 4 shares · 1,135 followersView post →
IA
Irish ME/CFS Association
@IrishMECFSAssoc · X
RT @TimC_syd: @Aslaug_Linnea @bmkrohn1 @ErlingSvensen Some PACE data has been reanalysed independently the best way they could considering…
Nov 25, 2022 · 4 shares · 2,574 followersView post →
TK
Tom Kindlon
@TomKindlon · X
RT @TimC_syd: @Aslaug_Linnea @bmkrohn1 @ErlingSvensen Some PACE data has been reanalysed independently the best way they could considering…
Nov 25, 2022 · 4 shares · 15,262 followersView post →
TC
Tim C
@TimC_syd · X
@Aslaug_Linnea @bmkrohn1 @ErlingSvensen Some PACE data has been reanalysed independently the best way they could considering the limited data they could get from FOI requests.
Wilshire, Kindlon, Courtney, Matthees et al. 2018 BMC Psych.
"Rethinking the treatment of chronic fatigue syndrome..."
https://t.co/7nxA53OHLP
Nov 24, 2022 · 11 likes · 4 shares · 621 followersView post →
Nov 23, 2022 · 44 likes · 2 shares · 757 followersView post →
MN
ME/CFS News
@MECFSNews · X
@martinruecker Ein gutes Beispiel einer solchen irreführenden Studie ist hier das PACE trial: https://t.co/c72zpqUESK
Nov 19, 2022 · 6 likes · 14,454 followersView post →
JP
Jurika 82 pflanzt
@Tussipowerx3 · X
@MartinWirone @SandraMeincke @iqwig https://t.co/Na3ATNm5i7
Ist eine Zusammenfassung zur PACE-Studie, die damals die Wirksamkeit von GET, CBT nachweisen sollte.
Oct 20, 2022 · 15 likes · 2,020 followersView post →
GR
Gary Robinson
@lessorfewer · X
@fearnley_k "These findings raise serious concerns about the robustness of the claims made about the efficacy of CBT and GET."
https://t.co/g9eJ2CjYo5
@Medicinmanden @Kenneth57786161 @Ugeskriftet "Over a 100 academics, patient groups, lawyers, and politicians have now signed an open letter to the Lancet calling on the journal to commission an independent reanalysis of the data from the PACE trial" 2018.
Also, https://t.co/FfkMACBb36 https://t.co/03ddZnGW8e
@subversivepsych @amyboylanwrites @BinitaKane @lifeanalytics Here's a solid introduction to the topic: https://t.co/W0mYrlyGE3
And the reanalysis two years later:
https://t.co/pEd0lXzF4P
Long story short, one of the investigators testified under oath that no death threats had actually taken place, yet media ran with the story nonetheless.
RT @keithgeraghty: .back then I requested access to PACE data, this was rejected, a brave persistent ME patient in Australia took PACE auth…
Mar 30, 2022 · 10 shares · 1,460 followersView post →
MS
Magapanthus Smith
@magapanthus · X
RT @keithgeraghty: .back then I requested access to PACE data, this was rejected, a brave persistent ME patient in Australia took PACE auth…
Mar 29, 2022 · 10 shares · 2,369 followersView post →
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DF
@SWorkAllianceRM · X
RT @keithgeraghty: .back then I requested access to PACE data, this was rejected, a brave persistent ME patient in Australia took PACE auth…
Mar 29, 2022 · 10 shares · 902 followersView post →
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Cheryl Barrott
@CeeCoopGuild · X
RT @keithgeraghty: .back then I requested access to PACE data, this was rejected, a brave persistent ME patient in Australia took PACE auth…
Mar 29, 2022 · 10 shares · 1,008 followersView post →
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smashman42
@smashman42 · X
RT @keithgeraghty: .back then I requested access to PACE data, this was rejected, a brave persistent ME patient in Australia took PACE auth…
Mar 28, 2022 · 10 shares · 708 followersView post →
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Elaine
@SbrCraftmylife · X
RT @keithgeraghty: .back then I requested access to PACE data, this was rejected, a brave persistent ME patient in Australia took PACE auth…
Mar 28, 2022 · 10 shares · 461 followersView post →
CS
Christine Standing
@Force9Gale · X
RT @keithgeraghty: .back then I requested access to PACE data, this was rejected, a brave persistent ME patient in Australia took PACE auth…
Mar 28, 2022 · 10 shares · 257 followersView post →
VJ
Veronica Jones
@Forestvon · X
RT @keithgeraghty: .back then I requested access to PACE data, this was rejected, a brave persistent ME patient in Australia took PACE auth…
Mar 27, 2022 · 10 shares · 1,135 followersView post →
JS
Jackie Scoones
@jackiescoones · X
RT @keithgeraghty: .back then I requested access to PACE data, this was rejected, a brave persistent ME patient in Australia took PACE auth…
Mar 27, 2022 · 10 shares · 1,362 followersView post →
DG
Dr Keith Geraghty
@keithgeraghty · X
.back then I requested access to PACE data, this was rejected, a brave persistent ME patient in Australia took PACE author's host Uni to a FOI Tribunal and won case, opening up PACE to re-analysis here: revealing massive drop in reported benefits https://t.co/5IKsyPCH2H
Mar 27, 2022 · 66 likes · 10 shares · 8,584 followersView post →
VV
Vibeke Vind
@VibekeVind · X
@cfs_research @SFlottorp @HenrikVogt @Healthy_Control @NMacFa @Livelandmark @RecoveryNor @PaulGarnerWoof @cochranecollab @philparkerLP @NICEComms @DWP @keithgeraghty I am not reporting false info - but we disagree on the impact.
Minimal:
“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”
https://t.co/m7hFiIeIdL
@Livelandmark Many authors from UK with medical/science backgrounds raised many valid concerns outside the chosen ME/CFS definition. Harms were also found to be poorly handled or ignored,supported by patient surveys. No benefit objective measures
https://t.co/7nxA545KNP
https://t.co/iZCZpYQI5z
@Huxberry1 From patient surveys, which is a crappy way to track anything because they have the same pitfalls that the trials into M.E. had so far. It are subjective measures of open label trials or treatments. Below is the work of Wilshire et al. on PACE.
https://t.co/R9W5mTM7JZ
@nachor81 @EricTopol @apoorva_nyc As a chronically ill patient who has no effective treatment and has been stigmatized because of a bad trial in the Lancet (PACE, 2011) I’m the first to agree that not all of what’s published there is good https://t.co/YGGEB42r96
But please, no ad hominems, address the arguments
Hvorfor taes ikke reanalyser på KAT og GET mer alvorlig?
- sånn som feks denne:
https://t.co/sp6MwjikZo
Eller når de selv reanalyserer egen forskning [bilde]
Savner også at det vises til objektive PEM-funn i forskning.
Her vises det til 24 CPET-studier:
https://t.co/ePGfFDkZWb https://t.co/TpbJQNJnzv
RT @arisonsned: Three years ago-
Rethinking the treatment of chronic fatigue syndrome-a reanalysis & evaluation of findings from a recent…
Mar 22, 2021 · 17 shares · 10,248 followersView post →
KB
Katy B
@KatyBruce108 · X
RT @arisonsned: Three years ago-
Rethinking the treatment of chronic fatigue syndrome-a reanalysis & evaluation of findings from a recent…
Mar 22, 2021 · 17 shares · 5,951 followersView post →
PP
Politik Papegøjen
@dkpolparrot · X
RT @VibekeVind: I går var det 3 år siden at Robert Courtney døde. Han var medforfatter på reanalysen af PACE-trial, der viser at gradueret…
Mar 8, 2021 · 2 shares · 2,507 followersView post →
SQ
Susanne Zimmer, Q
@Susanne_Zimmer_ · X
RT @VibekeVind: I går var det 3 år siden at Robert Courtney døde. Han var medforfatter på reanalysen af PACE-trial, der viser at gradueret…
Mar 8, 2021 · 2 shares · 1,731 followersView post →
JP
John Peters
@johnthejack · X
@NeurolawGuy @DrFulli Well, it not appealed. Judgment clearly dismisses claim of harassment of researchers. Data were released.
Reanalysis of data using original protocol doesn't support claimed findings.
https://t.co/xHMqlafv0v
Decision been followed for other trial data.
https://t.co/hefltz7Kyc
Dec 14, 2020 · 1 like · 4,909 followersView post →
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Vibeke Vind
@VibekeVind · X
@maddymul @MEForeningen_dk Per Finks dokumentation er:
1. PACE
Når man henviser til det studie skal man også henvise til genberegningen, som viser ingen/marginal effekt.
Studiet indgår i NICE's rating
#sundpol
https://t.co/m7hFiIeIdL
@claytonsbingham @liv29 @ProfRobHoward There's a whole long history to this of poor studies using subjective measures in unblinded trials https://t.co/q8F5vIomwF
https://t.co/xHMqlafv0v
See also
https://t.co/7IYIj6ixTi
Balanced NICE comm reviewed evidence
https://t.co/epTD0FTugR
Nov 11, 2020 · 3 likes · 4,909 followersView post →
AW
Astrid Synnøve Waage
@SynnAstrid · X
@alien_kakofoni @Livelandmark @Diplodokus1 Ikke bare pasientene som påstår dette. https://t.co/pJRFEVawRJ
Crawley paper compares NHS CBT-GET clinic data v PACE trial - but we have sub. analysis that shows true failure of PACE trial (in fact we see true pattern that trials and clinics can not get most ME/CFS patients back to normal SF36 physical function) https://t.co/5IKsyPC9d9
https://bmcpsychology.biomedcentral. com/articles/10.1186/s40359-018-0218-3. Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation ...
School of Psychology, Victoria University of Wellington | Wellington
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"The time has come to look elsewhere for effective treatments." Read the paper here: https://bmcpsychology.biomedcentral. com/articles/10.1186/s40359-018-0218-3 ...
Rethinking the treatment of chronic fatigue syndrome - a reanalysis ...
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DOI: 10.1186/s40359-018-0218-3. The article is available at the journal website. 2. BMC Psychology is an open access, peer-reviewed journal that considers ...
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