#MEAction delivers Lancet PACE petition, makes Wall Street Journal

#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claims were based on criteria that “were weakened so far from their original form in the study protocol that they no longer represent recovery by any rational standard”.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.” She added, “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.

Ollie Cornes, 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?”