In een speciale uitgave besteedt de Journal of Health Psychology aandacht aan 'PACE-gate'.

Ondanks pogingen om publicatie tegen te houden, ging het tijdschrift over tot publicatie.

De hoofdredacteur zet in zijn editorial niet alleen vraagtekens bij de aanpak en gesuggereerde

resultaten van de PACE-trial maar ok bij de belangenverstrengeling van de hoofdonderzoekers.

Tevens maakt de hoofdredacteur beleidsmakers attent op het feit dat de richtlijnen m.b.t. 'ME/CVS'

recht zouden moeten doen aan de huidige ('nieuwe') inzichten m.b.t. het 'effect' van CGT en GET.

Je zou andere (wetenschappelijke en populaire) media dezelfde moed toewensen.

https://twitter.com/newhealthpsych/status/891379622750846977

Alle artikelen zijn vrij toegankelijk (zie inhoudsopgave en hyperlinks hieronder).

Jammer genoeg laat de pers het (weer) opnieuw afweten om kritisch te berichten over CGT/GET.

Citaten uit de editorial:

We are proud that this issue marks

a special contribution by the Journal of Health Psychology

to the literature concerning interventions

to manage adaptation to chronic health problems.

The PACE Trial debate reveals

deeply embedded differences between critics and investigators.

It also reveals an unwillingness of

the co-principal investigators of the PACE trial

to engage in discussion and debate.

It leads one to question

the wisdom of such a large investment from the public purse (£5 million)

on what is a textbook example of a poorly done trial.

...

On the question of COI, the PACE authors themselves

appear to hold strong allegiances to

cognitive behavioural therapy (CBT) and graded exercise therapy (GET) –

treatments they developed for ME/CFS.

Persbericht Journal of Health Psychology

The PACE Trial: The Making of a Medical Scandal

28 July 2017

Journal of Health Psychology Special Issue on The PACE Trial, Vol. 22, No 9, Aug. 2017.

A Special Issue of the Journal of Health Psychology on the PACE Trial,

is to be published and freely available online on Monday 31 July 2017.

It marks a special contribution of the Journal of Health Psychology

to the literature concerning interventions to manage chronic health problems.

The PACE trial debate illustrates what can happen

when researchers become entrenched in a particular point of view, and

fail to engage in constructive exchange with critics and stakeholders.

It reveals an unwillingness of the Co-Principal Investigators of the trial

to engage in authentic discussion and debate.

It leads one to question the wisdom of such a large investment from the public purse (£5million)

on what is a textbook example of a poorly done trial.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

is a controversial and poorly understood disease

that blights the lives of over 250,000 people in the UK and 1.0M Americans.

People with ME experience a dramatic decrease in their stamina

for ordinary physical and cognitive activities,

a characteristic dramatic in­crease in symptoms

after minimal physical or cognitive exertion called post-exer­tional malaise, and

a myriad of symptoms including sleep dysfunction, orthostatic intolerance and

cognitive dysfunction as well as fatigue and pain.

Normal activities like walking, showering, having a conversation or writing an email

can leave people shattered for days or weeks or may simply be impossible.

Most people with ME cannot work and 25% are confined to their homes or beds.

The PACE Trial sought to test if two therapies,

a talking therapy called ‘Cognitive Behavioural Therapy’ (CBT) and

exercise in the form of ‘Graded Exercise Therapy’ (GET), might help.

The Trial attracted unprecedented criticism,

not only because it cost taxpayers an extraordinary sum (almost £5 million)

but the trial itself was deeply flawed.

The results are, at best, unreliable, and, at worst, manipulated

to produce a positive-looking result.

Patient groups have cried foul because they believe they are being sold a lie

that talk therapy and exercise can cure ME/CFS

when in fact many experience actual harm.

The PACE Trial was led by

Professor Peter White of Queen Mary University London (retired),

Professor Michael Sharpe of Oxford University and

Professor Trudie Chalder of Kings College London.

They published their results in the Lancet in 2011

with the contentious claim that

CBT and GET brought 30% of patients back to normal while 60% improved.

The patient community reacted with scepticism and after a long battle with the PACE authors,

a patient from Australia, Mr Alem Matthees,

won a Freedom of Information Tribunal case

to gain access to a small sub-set of the PACE trial data.

It was discovered that

the PACE authors had altered the way in which they measured improvement and recovery

to increase the apparent benefit of the therapies.

Reanalysis showed that

the improvement rate fell from 60% to 21% and

the recovery rate fell from 22% to just 7% when using the original study protocol.

The genie was out of the bottle.

In 2016 the Journal of Health Psychology published

an Editorial by Dr. Keith Geraghty of the University of Manchester entitled 'PACE-GATE'.

Geraghty suggested that the PACE authors had altered their procedures

to make CBT and GET look more beneficial.

The PACE trial team reacted with anger and submitted a cursory reply.

A host of experts on both sides of the debate were invited

by JHP Editor Dr David F Marks to write Commentaries on the PACE Trial.

All Commentaries were peer-reviewed.

The majority agreed

that the PACE Trial was flawed,

that the PACE authors had altered their methods,

breaking a fundamental principle of clinical trials, and

that results from the trial were unreliable.

It also highlighted that

the PACE Co-Principal Investigators had conflicts of interest

by acting as consultants to large insurance companies and

Professor White had also worked as an advisor to the Department of Work and Pensions,

a main funder of the PACE trial,

with a special interest in reducing social security benefits to disabled ME/CFS claimants.

Despite many serious concerns about the PACE Trial,

the trial continues to be used by UK Governmental agencies,

the NHS and the National Institute for Clinical Care Excellence (NICE)

as part of the evidence-base to recommend CBT and GET to sufferers of ME/CFS.

The current review by NICE of these treatments presents an opportunity

to bring clinical practice properly in line with scientific evidence.

http://www.meassociation.org.uk/2017/07/

the-pace-trial-the-making-of-a-medical-scandal-29-july-2017/

Journal of Health Psychology

Special Issue: The PACE Trial

Volume 22, Issue 9, August 2017

Table of Contents