Ollie Cornes, automatiseringsdeskundige en al 17 jaar ziek,
heeft, namens ME Action, de petitie vergezeld van 11.000 handtekeningen,
waarin verzocht wordt om de uitkomsten van de PACE trial studie uit 2011 vrij te geven en
op basis van de veel strengere criteria uit het oorspronkelijke protocol uit 2007 te laten doorrekenen,
verstuurd naar The Lancet.
Ollie wilde de petitie persoonlijk overhandigen aan Richard Horton,
hoofdredacteur van The Lancet, maar die gaf wederom letterlijk en figuurlijk niet thuis.
De petitie is ook verstuurd naar Psychological Medicine,
dat een studie publiceerde waarin door de PACE trial-onderzoekers geclaimd werd
dat 22% van de CVS-patiënten (volledig) hersteld waren na CGT en GET.
Voor het begeleidende persbericht, klik op onderstaande afbeelding:
#MEAction delivers Lancet PACE petition, makes Wall Street Journal
March 8, 2016
By #ME Action
#MEAction has sent an 11,000-signature petition to The Lancet,
calling for the retraction of "misleading" analyses and
claims published in a 2011 PACE trial paper
concerning the effectiveness of
cognitive behavioural therapy and graded exercise therapy for ME/CFS.
Copies of the petition, which when printed were over 400 pages,
were also delivered to the UK and US offices of Psychological Medicine.
The journal published a paper on recovery rates in the trial
that the petition claims were based on criteria
that "were weakened so far from their original form in the study protocol
that they no longer represent recovery by any rational standard".
The study authors also received a copy.
The petition calls upon them to
"publish the recovery outcomes
according to the analyses specified in the trial's protocol" and
to give independent researchers full access to the anonymised raw data.
Press releases about the delivery of the petition
have now been sent out to the UK and US media and
the story has already been picked up
by the Wall Street Journal in a piece by Amy Dockser Marcus.
Ms Marcus reported that the PACE authors declined to be interviewed.
However, Dr Richard Horton, editor of The Lancet, told her,
"When you see some things written on social media
[about the ME/CFS trial and the investigators],
it makes you anxious that the claims for rational scientific debate
based on access to the data may not be fully delivered."
"Dr. Horton says the Lancet stands by the trial findings."
The petition was launched on October 28, 2015, and
broke all records in the ME/CFS community,
reaching its 10,000-signature target in 16 days.
Delivery of the petition has been delayed
due to health problems within the petition team.
a 43-year-old, London-based patient who has been ill for 17 years,
asked to meet with The Lancet's editor, Dr Richard Horton, but was refused.
Mr Cornes said,
“I'd said in my email that even though I was very sick, I'd travel across
London to his office at a time that was convenient for him, and
I'm very disappointed that he wouldn't meet.
It seems dismissive of patients' concerns,
when over 11,000 of us are reaching out to him.”
Mr Cornes added,
"I really hope that the UK papers, especially, pick it up and focus attention on The Lancet.
I can't shake this feeling that medical journals are perhaps forgetting why they exist
- if they think patients don't matter, what's the point of them?"