(3/3) This spin poisoned the well against critics of the #PACEtrial, so I had to address it in detail with the information tribunal that sided with my FOIA request. It was well received and they agreed the assessment of #MECFS activism in relation to the #PACEtrial was "grossly exaggerated" (p40).
informationrights.decisions.tribunals.gov.uk
October 2, 2026 at 5:02 AM
(3/3) This spin poisoned the well against critics of the #PACEtrial, so I had to address it in detail with the information tribunal that sided with my FOIA request. It was well received and they agreed the assessment of #MECFS activism in relation to the #PACEtrial was "grossly exaggerated" (p40).
The #PACEtrial recovery song by the late Graham McPhee uploaded to Youtube around 2014, which along with his more serious videos on the same channel, was used to argue that he was part of an organised campaign of harassment when he submitted a FOIA request for the fitness data from the PACE trial.
6: ME Recovery Song
YouTube video by MEAnalysis
www.youtube.com
October 7, 2026 at 7:52 AM
The #PACEtrial recovery song by the late Graham McPhee uploaded to Youtube around 2014, which along with his more serious videos on the same channel, was used to argue that he was part of an organised campaign of harassment when he submitted a FOIA request for the fitness data from the PACE trial.
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
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
December 14, 2025 at 1:54 PM
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
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
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
But unfortunately, that is the way it usually goes for post-publication "debate", when the vested interests are in bed with the journals.
#PACEtrial
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
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
March 27, 2026 at 10:23 AM
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
But unfortunately, that is the way it usually goes for post-publication "debate", when the vested interests are in bed with the journals.
#PACEtrial
(2/3) The Science Media Centre (UK) ran an organised campaign for "seizing the agenda", "frame the narrative", and "engineered the coverage" (p12). This resulted in numerous hyperbolic articles about alleged harrassment of #MECFS researchers which conflated it with valid criticism of the #PACEtrial.
Wayback Machine
web.archive.org
October 2, 2026 at 5:02 AM
(2/3) The Science Media Centre (UK) ran an organised campaign for "seizing the agenda", "frame the narrative", and "engineered the coverage" (p12). This resulted in numerous hyperbolic articles about alleged harrassment of #MECFS researchers which conflated it with valid criticism of the #PACEtrial.
8-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
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
December 14, 2024 at 12:16 AM
8-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
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
Who wants to tell @slate.com
#PACETrial
#MyalgicEncephalomyelitis
#MEcfs
#pwME
#MillionsMissing
#GreatestMEdicalScandal
#PACETrial
#MyalgicEncephalomyelitis
#MEcfs
#pwME
#MillionsMissing
#GreatestMEdicalScandal
“I think if programs for adults took a similar tone, people just wouldn't participate.” slate.trib.al/p1G1U7z
The Boot Camps Treating Kids’ Pain
Being “cured” is rare, but mental anguish is nearly a given.
slate.trib.al
December 15, 2025 at 11:46 PM
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
Free: researchgate.net/publication/...
#MEcfs #PwME
March 21, 2026 at 1:36 AM
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
Free: researchgate.net/publication/...
#MEcfs #PwME
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
#StopRestPace #ThereForME #MillionsMissing #LongCovidKids
#GreatestMedicalScandal #PACEtrial
Not only do kids get infection-associated chronic illnesses, there's a spike in diagnoses of #MECFS ages 10-19.
Two vital resources:
#MEAction Pediatric Pacing and Management Guide, found here: www.meaction.net/resource/pac...
Pediatric Primer for #MECFS: pubmed.ncbi.nlm.nih.gov/28674681/
Two vital resources:
#MEAction Pediatric Pacing and Management Guide, found here: www.meaction.net/resource/pac...
Pediatric Primer for #MECFS: pubmed.ncbi.nlm.nih.gov/28674681/
June 21, 2025 at 7:48 AM
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
#StopRestPace #ThereForME #MillionsMissing #LongCovidKids
#GreatestMedicalScandal #PACEtrial
I know I am preaching to the choir here. I just wanted to express a few thoughts about how the phrase "avoiding PEM as much as possible" can be weaponised against pacing. We saw how APT in the #PACEtrial used an inappropriate 70% rule which Leonard Jason has rightly criticised, PMID: 28805518.
September 17, 2026 at 6:08 PM
I know I am preaching to the choir here. I just wanted to express a few thoughts about how the phrase "avoiding PEM as much as possible" can be weaponised against pacing. We saw how APT in the #PACEtrial used an inappropriate 70% rule which Leonard Jason has rightly criticised, PMID: 28805518.
Today is 8-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
Free: researchgate.net/publication/...
#MEcfs #PwME
March 21, 2025 at 12:30 AM
Today is 8-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
Free: researchgate.net/publication/...
#MEcfs #PwME
The #PACEtrial: controversial study that has influenced #me/cfs treatment worldwide for years. Now, with its flaws exposed and treatment guidelines revised, the same flawed narrative threatens #longcovid patients. The fight continues!
New @thereforme.bsky.social blog post today by David Tuller @davetuller1.bsky.social :
"When bad science becomes orthodoxy: Reflections from a decade of debunking the PACE trial"
www.thereforme.uk/p/when-bad-s...
#MEcfs #LongCovid #PACEtrial
"When bad science becomes orthodoxy: Reflections from a decade of debunking the PACE trial"
www.thereforme.uk/p/when-bad-s...
#MEcfs #LongCovid #PACEtrial
January 21, 2025 at 6:45 PM
The #PACEtrial: controversial study that has influenced #me/cfs treatment worldwide for years. Now, with its flaws exposed and treatment guidelines revised, the same flawed narrative threatens #longcovid patients. The fight continues!
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
Subsequent reanalysis showed comprehensively the original paper was bollocks
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
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
December 14, 2025 at 10:40 PM
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
Subsequent reanalysis showed comprehensively the original paper was bollocks
From the European Association Of Psychosomatic Medicine (EAPM) Conference in Munich (10-13th Sept 2025)
#GreatestMEdicalScandal #PACEtrial #pwME
#GreatestMEdicalScandal #PACEtrial #pwME
October 2, 2025 at 12:40 AM
From the European Association Of Psychosomatic Medicine (EAPM) Conference in Munich (10-13th Sept 2025)
#GreatestMEdicalScandal #PACEtrial #pwME
#GreatestMEdicalScandal #PACEtrial #pwME
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
The #PACEtrial gets criticism and a sufferer in Oxford welcomes that criticism. @davetuller1.bsky.social
#myalgicencephalomyelitis #cfsme #myalgice #myalgice
March 26, 2025 at 10:20 PM
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
The #PACEtrial gets criticism and a sufferer in Oxford welcomes that criticism. @davetuller1.bsky.social
#myalgicencephalomyelitis #cfsme #myalgice #myalgice
It is! And it's inexplicable that @bmj.com chose to publish it anyway. But if we learned anything from the #PACEtrial is that high IF journals are as unreliable as the low IF ones. To this end, we wrote a 'rapid response' with some critical points: www.bmj.com/content/387/...
Long COVID needs real therapeutics: time to move past disproven approaches
www.bmj.com
December 4, 2024 at 5:16 PM
It is! And it's inexplicable that @bmj.com chose to publish it anyway. But if we learned anything from the #PACEtrial is that high IF journals are as unreliable as the low IF ones. To this end, we wrote a 'rapid response' with some critical points: www.bmj.com/content/387/...
10 years today, after a David vs Goliath FOI legal battle that damaged Alem Mathees, White et al were forced to release data from PACETrial (that cost UK taxpayers £5M) showing graded exercise therapy & CBT didn’t lead to an increased recovery rate for CFS.
Please remind the world
#MEcfs #PwME #CFS
Please remind the world
#MEcfs #PwME #CFS
September 8, 2026 at 11:15 PM
(3/3) We can gain an impression from multiple large-scale patient surveys that adverse responses to CBT and GET are common for those with #MECFS outside clinical research such as the #PACEtrial, unsurprising since post-exertional malaise or symptom exaceration is the hallmark symptom.
Sage Journals: Discover world-class research
Subscription and open access journals from Sage, the world's leading independent academic publisher.
journals.sagepub.com
September 24, 2026 at 6:19 PM
(3/3) We can gain an impression from multiple large-scale patient surveys that adverse responses to CBT and GET are common for those with #MECFS outside clinical research such as the #PACEtrial, unsurprising since post-exertional malaise or symptom exaceration is the hallmark symptom.
Not the first time a Labour government has tried to use IAPT as a miracle cure #pacetrial #myalgicencephalomyelitis
April 5, 2025 at 8:35 PM
Not the first time a Labour government has tried to use IAPT as a miracle cure #pacetrial #myalgicencephalomyelitis
Shame on @bmj.com for publishing yet another methodologically flawed piece on behavioural interventions in #IACC (such as #longcovid and #myalgicE). Haven't you learned anything from the #pacetrial? Don't you check the quality of the evidence provided? #pwME #MEcfs #pwLC
www.bmj.com/content/387/...
www.bmj.com/content/387/...
Interventions for the management of long covid (post-covid condition): living systematic review
Objective To compare the effectiveness of interventions for the management of long covid (post-covid condition).
Design Living systematic review.
Data sources Medline, Embase, CINAHL, PsycInfo, Alli...
www.bmj.com
November 28, 2024 at 7:32 PM
Shame on @bmj.com for publishing yet another methodologically flawed piece on behavioural interventions in #IACC (such as #longcovid and #myalgicE). Haven't you learned anything from the #pacetrial? Don't you check the quality of the evidence provided? #pwME #MEcfs #pwLC
www.bmj.com/content/387/...
www.bmj.com/content/387/...
CBT enthusiasts don't change their spots - at least overnight #pacetrial
November 27, 2024 at 2:13 PM
CBT enthusiasts don't change their spots - at least overnight #pacetrial
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...
www.mdpi.com/2075-1729/15...
www.mdpi.com
April 4, 2025 at 1:39 PM
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...
www.mdpi.com/2075-1729/15...
Advocates for #pwME who have a public platform, if it comes up in interview, don't hesitate to call the #PACETrial exactly what it was, government funded insurance co. linked - research fraud which has lead to the harm & in some cases the deaths of hundreds of thousands of #pwME
May 27, 2026 at 3:52 PM
Advocates for #pwME who have a public platform, if it comes up in interview, don't hesitate to call the #PACETrial exactly what it was, government funded insurance co. linked - research fraud which has lead to the harm & in some cases the deaths of hundreds of thousands of #pwME
It's 8-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
journals.sagepub.com/doi/full/10....
#MEcfs #CFS #MyalgicE #CBT
March 20, 2025 at 12:19 AM
It's 8-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
journals.sagepub.com/doi/full/10....
#MEcfs #CFS #MyalgicE #CBT