The PACE trial - Part 4: Politics

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].

#MyalgicEncephalomyelitis #ME #ChronicFatigueSyndrome  #CFS #MECFS

[Questionablexfun]

great overview for us me/cfs folks! thanks <3

[rvallee]

Excellent overview and great flow over the various details. It's shocking that the facts speak for themselves so plainly and nothing changes.

[debranice]

Thank you for sharing, 🤝 it is shocking & criminal . Do we have Simon Wesley Royal psychologist to blame for this crime against humanity 🤔

[Spikypotato.]

WHY did they do this😔😥 why?

❤thank you for another excellent video BB🪫🔋