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.
https://journals.sagepub.com/doi/full/10.1177/1359105317697323
#MEcfs #CFS #MyalgicE #CBT #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
More quotes:
"ME/CFS has been psychologised by a framework known as the biopsychosocial model
...
But the PACE study has since been conclusively debunked."
David Tuller has written at length on virology.ws about the many problems with 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
https://tandfonline.com/doi/full/10.1080/21641846.2017.1259724
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
Today is 6th anniversary of publication of this rejoinder.
Free here: https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-019-0296-x
The more important paper is initial paper which included re-analyses of £5m #PACETrial results.
Free here: https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3
That is the last of the anniversaries of my paper publications for a while
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
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.
It's the 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?
https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
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.
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
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #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.
https://journals.sagepub.com/doi/full/10.1177/1359105317697323
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CBT
For examples of scientific harm done to ME/CFS patients see this video by @brokenbattery
It lists many issues, including the CDC renaming the illness in 1988 and the PACE trial, a flawed research study that has not yet been retracted:
https://www.youtube.com/watch?v=RiwX9Y0NbiQ
"George Monbiot describes the treatment of Myalgic Encephalomyelitis as 'the greatest medical scandal of the 21st century' …'"
Transcript:
https://medium.com/@abrokenbattery/me-cfs-scandal-explainer-eb4c1bfb7464#0cda
When PACE-Gate Meets Sample Size Calculations - Nuno Sepulveda
https://link.springer.com/chapter/10.1007/978-3-031-68949-9_12
Image is from latest Science for ME weekly update
PACE-Gate is the name by which the case surrounding the high-profile PACE clinical trial became publicly known. This case ended up in controversy due to a change in the pre-trial primary endpoint and a re-definition of the treatments’ efficacy. The present...
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
https://tandfonline.com/doi/full/10.1080/21641846.2017.1259724
#MEcfs #CFS
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Tom Kindlon
ahimsa