New Video: The PACE trial - Politics

https://www.youtube.com/watch?v=rqDKz6dzG88

 

The defining symptom of ME is that even minimal exertion can cause a crash (flare in symptoms) for days/months/weeks. In severe cases it can cause relapses and patients become significantly more disabled for months/years; some never recover. Multiple surveys have consistently shown that Graded Exercise makes over 50% of patients worse [1].

The PACE trial was published in 2011 and was widely reported in the media as a success, with headlines like "Exercise and positivity ‘can overcome ME" [2]. Patients made numerous freedom of information requests for the data but
were refused. After a long legal battle, some of the data was released [3].

The authors also refused to share the data with other researchers. An ‘Expression of Concern’ was added to a related paper after they broke the journals data sharing policy [4].

The data was reanalysed using the authors original protocol and found the claim that patients can recover is “not justified by the
data” and “highly misleading” [5].

The Journal of Health Psychology dedicated an entire issue to understand the many problems with the PACE trial and described it as a “textbook example of a poorly done trial” [6]. 80 charities, 10 MPs and over 100 academics signed an open letter to the Lancet in 2018 requesting an independent re-analysis of the trial [7]. The Lancet failed to respond.

“Researchers have put massive effort into discrediting the whole community and rallying other researchers to their defense. It’s been a collective ad hominem attack” [8]. “The patient community has been publicly vilified by the trial authors and colleagues but they have turned out to be right" [9]. Claims of harassment made by the PACE authors were found to be “grossly exaggerated” in court [3].

The Science Media Centre (SMC) provides science information to the media in the UK. The SMC are “proactive”, they “changed the whole course of coverage” on pandemic swine flu in 2009 [10]. One of the most influential researchers in ME/CFS sat on the advisory committee and the board of governors of the SMC and was involved in the PACE trial [11, 12].

The SMC has helped place articles about harassment in the press. They ‘gave’ the
original story to the BBC in 2011 [13] and released an ‘inaccurate’ factsheet the day before a reanalysis paper was published [14].

The behaviour of one of the PACE authors was criticised in parliament after he emailed the organiser of a debate about the PACE trial [15].

[1] https://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full
[2] https://meassociation.org.uk/2015/1...t-about-the-daily-telegraph-11-december-2015/
[3] https://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html
[4] https://meassociation.org.uk/2017/0...trial-cost-effectiveness-analysis-2-may-2017/
[5] https://www.tandfonline.com/doi/full/10.1080/21641846.2017.1259724
[6] https://meassociation.org.uk/2017/0...ial-introduction-by-david-marks-31-july-2017/
[7] https://www.virology.ws/2018/08/13/trial-by-error-open-letter-to-the-lancet-version-3-0/
[8] https://absolutelymaybe.plos.org/20...-the-me-cfs-exercise-dispute-matters-so-much/
[9] https://www.parliament.scot/S5_PublicPetitionsCommittee/Submissions 2018/PE1690_F.pdf
[10] SMC promotional video 5 mins 46 & 8 mins 26
[11] https://pubmed.ncbi.nlm.nih.gov/?term=Wessely+S[Author]+"chronic+fatigue+syndrome"
[12] https://me-pedia.org/wiki/Simon_Wessely
[13] http://www.sciencemediacentre.org/w...arch-function-at-the-Science-Media-Centre.pdf
[14] https://meassociation.org.uk/2018/0...place-your-factsheet-on-cfs-me-05-april-2018/
[15] https://hansard.parliament.uk/Commo...4E35-A83B-49FEF0D6074F/METreatmentAndResearch

 

Damn, that was so good. Great flow to link the various details. In the end this is the most significant part: this disease has been completely politicized. Had it not been politicized this nonsense would have barely made a splash. People like Wessely, White, Aylward, Gerada, Fink, people who did more medical politics than actual medicine have won this by going full political and bullying through an ideology aligned with the politics of austerity. They promised savings that were complete fantasy and now escalation of commitment has made backtracking impossible.

It's true that this will end up being the biggest medical scandal of the century at some point, but PACE is only one part of this. The entire BPS ideology is the merger of politics and medicine, built on complete disregard for the actual mission of medicine of helping the sick.

 

Thanks Richard. Appreciated and I completely agree.

 

Thanks Trish

 

Are the claims of harassment still being made after the FOI tribunal said that they were grossly exaggerated?

 

Not necessarily by the people who were the originators of those words but they are still being quoted in the press. As recently as within the past few weeks I saw here on S4ME a screen capture of a newspaper article saying as much.

ETA: and they never get corrected. And I'm sure those responsible for originating the idea are well aware.

 

Michael Sharpe made numerous claims of harrasment, on a guardian podcast and on the BBC Today Programme and in some news articles, it was over a year ago, but after the tribunal. I saw it mentioned in a news article last week too which prompted me to finish the video.

 

Posted this on FB. Excellent @Adam pwme

 

Another truly excellent video, thanks so much Adam pwme

 

Thanks Barry and Daisy appreciated

 

The Financial Times repeated them in a recent article.

And of course there's the Reuters hit piece from last year that got many derivative articles all parroting the lie. And pretty sure it got a mention in the Swedish (?) series by Afondablet or something like that.

 

Fantastic @Adam pwme thank you! Just rewatched the first three parts to remind myself. Great video

 

Thanks

 

Simply brilliant again .

 

Thank you

 

Thank you Adam. A great and important piece of work.

I enjoyed rereading some of the references too.

Am I right in remembering that it is 4 years today since the Information Commissioner's Tribunal ( ?Upper Tribunal) announced that the data should be partially released? What a day for pwme! And thanks to Alem Matthees.

That decision changed the story around Pace.

 

wow @Adam pwme, another fantastic video! I’ve been thinking around and around about ways to introduce this topic to people I know, and this is perfect. Thank you so much for your hard work, you’re really skilled at this

 

Thanks Rainy. I'm glad you find it useful.