Spinning the Results to the Media
On Feb 17th 2011, the Science Media Centre (ScMC) hosted a press conference for the publication of the PACE Trial in the Lancet. The ScMC state: “The overall goal of the Centre is to help renew public trust in science by working to promote more balanced, accurate and rational coverage of the controversial science stories that now regularly hit the headlines”, and; “…the Centre will be free of any particular agenda within science and will always strive to promote a broad spectrum of scientific opinion – especially where there are clear divisions within science. It will not shy away from promoting voices that are critical of particular aspects of science.”[i]
The ScMC have experts available for commenting on specific areas of science news. Their ‘expert’ for media comment on ME/CFS related news stories is Professor Sir Simon Wessely. Professor Wessely was a PACE Trial Centre Leader, member of the PACE Trial Management Group and collaborated in the design and execution of the research. For many years he has expressed his controversial opinion that ME/CFS are psychological illnesses that can be treated with GET and CBT. His bias is irrefutable and perpetuates to the present day. The Principal Investigators of the PACE Trial, Professors Peter White, Michael Sharpe and Trudie Chalder are all part of the ‘wessely-school’, i.e., supporters of Professor Wessely’s ideas. Professor Wessely has conducted and co-authored research into ME/CFS with all the PACE Trial Principal Investigators amounting to dozens of publications.
Therefore it was not surprising to many ME/CFS patients that media reporting of the PACE Trial was grossly biased. It is what might be expected when an organisation that promises ‘balanced’ coverage, gives an influential position to someone who is known for their bias.
It is significant that the ScMC claim: “OUR MISSION. To provide, for the benefit of the public and policymakers, accurate and evidence-based information about science and engineering through the media, particularly on controversial and headline news stories when most confusion and misinformation occurs.”[ii]
The implications of this are disturbing. The ScMC expect that information provided under their auspices will influence ‘policymakers’.
So policymakers should be able to make decisions about research, planning, purchasing and provision of medical treatments that could affect millions of patients using the ScMC’s ‘accurate and evidence-based’ information. Yet following the ScMC hosted press-conference, these media articles appeared:
As the Medical Research Council (MRC) funded the PACE Trial, it should meet the MRC Guidelines for Good Research Practice (2005) which states: “The MRC’s mission can only be fulfilled if the results of research are communicated effectively. The MRC therefore expects those it supports to play their part in disseminating balanced information on scientific advances and their potential implications for society to the health professionals and policy makers who will be involved in applying them, and to the wider public.”
False, exaggerated and selective reporting do not constitute ‘balanced information’, but may nevertheless have significant “potential implications for society to the health professionals and policy makers who will be involved in applying them, and to the wider public.”
If healthcare providers fund the treatments GET and CBT expecting 60% to improve and 30% to recover or even get close to ‘normal’ they will have been egregiously misled.
The General Medical Council state in:[i] “Good practice in research. About this guidance.
- You must help to resolve uncertainties about the effects of treatments. (Paragraph 14f)
- Research involving people directly or indirectly is vital in improving care and reducing uncertainty for patients now and in the future, and improving the health of the population as a whole. (Paragraph 70)
- If you are involved in designing, organising or carrying out research, you must put the protection of participants’ interests first, act with honesty and integrity and follow the appropriate national research governance guidelines. (Paragraph 71)”
The MRC Good Research Practice states:[i] “G.5 When reporting research findings in publications, presenting at scientific meetings and engaging in debates in the media or in public, any relevant interests must be declared. This is to help others understand the factors that may have influenced the research team and would include any interests that might be considered by others, including the public, to be a conflict. Research findings that are likely to attract strong public or media interest should be drawn to the attention of the MRC and/or other research funders before publication.”
[i] Science Media Centre. CONSULTATION REPORT. MARCH 2002. Online pdf: http://www.sciencemediacentre.org/uploadDir/536adminconsultation_report.pdf