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.
Yours sincerely
Dr Charles Shepherd
Hon Medical Adviser
The ME Association
Thanks Dr Shepherd – a very commendable letter. Let’s hope it knocks some sense into these people.
Thank you very much. I do hope the SMC is prepared to meet with you! But I’m afraid changing their attitude will be an uphill struggle. Good Luck!
And again! I shall cross all parts of my anatomy that I can! 😀
Thank you for working to counteract the damage done by that dreadful PACE study. I like the references you used here: https://meassociation.org.uk/?p=4900
I’d like to suggest that another good reference might be http://www.ncbi.nlm.nih.gov/sites/ppmc/articles/PMC2757484/
“Moderate exercise increases expression for sensory, adrenergic and immune genes in chronic fatigue syndrome patients, but not in normal subjects,” by Light et al.
Thank you very much for writing to the SMC. Excellent letter. I have been concerned about how the recent media bias in the coverage of ME/CFS may be related to the lack of divergent views regarding the illness within the SMC. I really hope they respond to you. It may be an uphill battle, but it is a worthwhile one.
Bravo! I was thinking of emailing them but they would just have binned my message.
fantastic letter
Keep up the good work Charles as you always have done over the many years of struggle.
It is good to see the ME association standing up for us for a change. We need you to fight for us and help us to overcome all the stupid psychobabble. CBT and GET do not treat this disease. The science is leading the way. Follow the science.
The “Got ME?” link appears to be incorrect currently. I’m getting linked to an article from 2008 entitled “Dr Betty Dowsett in hospital”.
Re above: it looks like the link was just missing the 7 at the end. It SHOULD have been:
https://meassociation.org.uk/?p=4637
Thanks, Robin Hood! Link mended.
Good for the MEA, thank you.
Thank you for making this complaint to the Science Media Centre; it comes none too soon. I hope you will continue to keep up the pressure on them – and even take it further if possible. The censorship in the UK media around ME is blatant and shocking.
Thank you MEA for confronting the SMC on this issue. Their influence on how ME is reported by the lazy UK mainstream media has gone on for far too long. I would now like to see the people within that organisation, who are responsible for the repeatedly biased reporting of stories about ME, exposed for the twisted, self-serving, heartless bigots that they really are.
Perhaps this could be ‘stickied’ before it gets buried in among other news?
Good point, Firestormm.
It’s now ‘stickied’ and may be ‘Quick Linked’ later in the day – so it remains visible until we hear from the SMC and update the story.
Tony
Thank you for challenging the longstanding bias of the SMC, Dr. Shepherd.
I wrote to my MP last November about the distortion of all the publicity regarding ME, and especially the role of the SMC in this.
This is a serious issue.
I suggest the APPG MPs are briefed on the threat the SMC poses to fair, democratic and open discussion of ME in this country.
Can they protect citizens with ME from being consistently portrayed in such a distorted way?
Many thanks Dr. Shepherd for taking a stand for honesty, fairness and integrity.
It is clear that there is not a free press in UK concerning ME/CFS, which begs the question what other areas of science and health are being skewed in the media as a result of the biased opinions of among the Science Media Centre’s “experts”.
Certainly, the SMC’s strong bias with regard to ME/CFS is giving the SMC, and thus the UK mainstream media, a bad name internationally, as the world is now watching closely via the internet.
Worse than that, of course, are the seriously adverse repercussions for the thousands of people in UK who contracted a chronic neuro-immune disease through no fault of their own; one which cannot be treated by behavioural therapies, and which is made much worse by exercise, as would be the case for patients with untreated heart disease, for example.
Thanks Dr. Shepherd for being my voice when I don’t have the energy to defend myself. I was diagnosed with Full blown M.E. by Prof. Peter Behan 26 years ago. He said to me I had a virus that he didn’t know when it would end. He wasn’t joking !!
I just read this document http://www.sciencemediacentre.org/uploadDir/536adminconsultation_report.pdf which somebody highlighted on a list.
I thought these quotes could be useful if making points to the Science Media Centre:
“The Centre will operate like a newsroom, reacting to the news agenda while proactively promoting a spectrum of scientific opinion.”
Don’t think they did that with the PACE Trial press release.
Similarly:
“However, 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.”
There may be similar quotes on the SMC website somewhere e.g. a search for “spectrum” might reveal them.
Good morning Dr Shepherd,
Methinks asking Dr Montoya to add his voice to any ‘discussion’ with the Science Media Centre would be a useful 🙂
I wonder how the news that NICE will not be amending its’ Guidelines will pan out with the SMC in this meeting?
Apparently the DWP sponsored the PACE project, the only time they have sponsored a project of this type. It’s already difficult enough to qualify for benefits when you have ME/CFS. this is just going to make it harder.
In what way Stephen?
Because ATOS, who carry out the medical testing on behalf of the DWP already struggle to take account of the fluctuating nature of ME/CFS, a significant percentage of ME/CFS sufferers are only getting benefits after an appeal.
If the seriousness of the illness is devalued by it only taking “a bit of exercise” to achieve a full recovery, the number found fit will increase and even those who do pass will be subjected to re-assessments every 3-6 months.
I tried this weekend to highlight the PACE trial/ skewed SMC information and bad journalism on Ben Goldacre’s site, Bad Science, but he actually rejected my comment – with no explanation. It would seem that bad science is only bad if the scientists are not your friends or colleagues.
http://velo-gubbed-legs.blogspot.com/2011/03/bad-science.html
Any update on this meeting Tony?
They’ve not responded to our challenge yet, Firestormm. We’ll be discussing what to do next at our board meeting next week.
Tony
Good luck with trying to get a response. Unfortunately, I do think they may be too arrogant and narrow minded to realise the PACE trial was a failure.