The following email has been sent today to Fiona Fox (Director) and Helen Jamison (Senior Press Officer) at the Science Media Centre.
Dear Ms Fox and Ms Jamison
The ME Association has a number of concerns about the way in which the Science Media Centre is dealing with the subject of ME/CFS and presenting it to the media.
There is a wide spectrum of medical opinion as to what causes this condition and how it should be managed. However, this is not being reflected in the views of the ‘medical experts’ you choose to go to when an ME/CFS research paper appears.
The most recent example is the SMC press release – http://www.sciencemediacentre.org/pages/press_releases/11-02-17_cfsme_trial.htm – covering publication of the PACE trial results in The Lancet on 17 February. All of the SMC ‘medical experts’ who provided quotes for the media were strongly in support of the PACE trial results – with nobody pointing out any of the flaws or criticisms of this study.
The patient community, as well as a section of medical opinion, regards the design and outcome of the PACE trial with great scepticism. And in relation to the results for CBT, GET and pacing in the trial, these are not consistent with a large amount of patient evidence that has been published over the past few years.
The MEA is also very concerned about the way in which the results have been over-simplified in the media – in particular the inappropriate and potentially harmful advice concerning exercise that some newspapers provided. The worst example is the headline in The Independent newspaper: ‘Got ME? Just get out and exercise, say scientists’ and if you look at the comments following the various press stories you will see that there has been a very negative public reaction to the way in which the press has presented the results of this research.
The MEA is currently assessing patient opinion on the PACE trial results (>> monthly survey on the home page: www.meassociation.org.uk) and over 90% of people with ME/CFS who have responded so far (n currently = 462) are stating that the results are going to make the situation regarding management worse rather than better.
We are only aware of one ME/CFS charity that has shown any support for this trial (ie AYME) with the remainder concluding that the PACE trial results are flawed, the benefits for CBT and GET exaggerated, and the negative results for pacing are at serious odds with patient evidence – as pointed out in the MEA response to The Lancet.
The SMC may not agree with these dissenting views but we believe it is unacceptable to in effect censor other opinions as far as the media is concerned.
We would therefore be grateful if a meeting could be arranged to discuss how the SMC currently covers ME/CFS and whether the SMC is prepared to widen the range of ‘medical expert’ opinion when covering ME/CFS research in the future.
Dr Charles Shepherd
Hon Medical Adviser
The ME Association