UPDATE 22 MARCH 2017: The publishers made this paper available to read as an Open Access document today. The Open Access link is www.tandfonline.com/doi/full/10.1080/21641846.2017.1259724
Story by Tony Britton
The ME Association believe that a recent independent re-analysis of the PACE Trial recovery data is such an important document that we have paid the publisher, Taylor & Francis, to open the full paper for all to read.
At the moment, the full text is hidden behind a paywall and the most that people can read without paying a hefty subscription is a 213-word abstract.
When the unpublished PACE trial data were re-analysed by Wilshire et al (2017), the authors found that – when recovery was defined according to the original trial protocol – recovery rates in the CBT and GET groups were low and not significantly higher than in the control group (4%, 7% and 3% respectively).
The authors concluded: “The claim that patients can recover as a result of CBT and GET is not justified by the data, and is highly misleading to clinicians and patients considering these treatments.”
The paper was published in Fatigue: Biomedicine, Health & Behavior, an American publication regarded as the house journal of the International Association of CFS/ME. This organisation holds big biannual conferences in the States.
But, as the publisher only allows free public access to an abstract, the whole paper can only be read for a fee.
MEA medical adviser Dr Charles Shepherd commented: “The MEA believes that this is such an important item of research that we have paid for the whole paper to be made open access.
“This will mean that everyone, health professionals in particular, will now be able to read the very important findings from the re-analysis of the PACE trial recovery data.
“As soon as our contractual arrangement with the publisher is finalised, the full paper will be available to view on the MEA website”.
The MEA has negotiated a reduced fee of US$2,000 with Taylor & Francis. The original asking price was US$2,800.
Fatigue: Biomedicine, Health & Behavior published the PACE Trial authors' response to Wilshire et al on 15 February 2017. It can be read HERE
THE PUBLIC ACCOUNTS COMMITTEE DECLINE AN IMMEDIATE INVESTIGATION
In a separate development, the influential Public Accounts Committee of the House of Commons have declined to launch an immediate investigation into whether taxpayers got value for money out of the £5m put into the PACE Trial.
The chairman, Meg Hillier MP, has told the Countess of Mar, who called for the inquiry, that she will take no action until after NICE have completed their next review of their guidance on ME/CFS. This summer, NICE will announce how they intend to tackle the job.
There has been lengthy correspondence between Meg Hillier’s office and the Countess, some of which was released at the beginning of February. It shows that Meg Hillier has called in the National Audit Office for advice.
The latest letter from Meg Hillier can be read in full here: www.meassociation.org.uk/wp-content/uploads/public-accounts-committee.pdf