DPAC sends solidarity to ME campaigners subject to recent attacks from researchers whose work they have fairly criticised and journalists repeating accusations with no interest in the real story.
A story run by Reuters and picked up by the Daily Mail and Rod Liddle writing for The Times claimed that researchers are leaving the study of treatment for chronic fatigue syndrome because of abuse and harassment from campaigners. There was no mention of the harm that their so-called “treatment” trials had caused or the significant scientific flaws in their research, as covered in an entire special issue of the Journal of Health Psychology. (Available at: https://journals.sagepub.com/doi/full/10.1177/1359105317722370).
ME activist Catherine Hale explains: “It’s the usual pattern: a spurious story about CFS researchers getting online harassment and having to quit their ‘vital’ research. In reality Professor Sharpe is quitting because so many other scientists have trashed his work and exposed PACE as bogus. Professor Wessely’s hand in this is as always because he controls the Science Media Centre which puts out these high profile press releases and all the usual suspects among health journalists lap it up. Rod Liddle spews his usual hate and contempt for people with ME as he does for other oppressed groups. It’s a regular pattern they use to deflect from negative news about PACE or the parliamentary debate that happened for example. We have no pundits in the mainstream media to tell our side of the story. All the public ever hears about is the “ME militant standing in the way of science” narrative.”
The battle that people with ME have to go through to be taken seriously and to receive the support they need is an injustice. It is also part of a wider issue of disability denial that affects all disabled people. The bogus research into CFS “treatment” was central to the development of a model of disability denial behind the design of benefit assessments for ESA and PIP.
The media accusations represent an attack against speaking out by patients against mistreatment. They are an attempt to silence those already suffering oppression and a massive imbalance of power. But they also show that the campaigning is working. Power never cedes graciously and we can’t expect that those losing it will give in without a fight. It is important we show solidarity to those campaigners who are currently under attack and to congratulate them for how far they have come in exposing and challenging injustice.
Messages of solidarity can be sent using the hashtags #millionsmissing #pwme #PACEgate.
For more information on the issues:
ME Action UK have written this letter to the editor of Reuters: https://www.meaction.net/2019/03/14/fighting-for-rigorous-science-and-accurate-reporting/
Articles on why the media are waging war on people with chronic illness by Steve Topple: https://mrtopple.com/2019/03/18/the-twisted-reason-the-media-have-waged-war-on-chronically-ill-and-disabled-people/
Campaigner Nathalie Wright’s article on the struggle to be taken seriously by doctors: https://www.independent.co.uk/news/long_reads/why-patients-me-demanding-justice-millions-missing-chronic-fatigue-illness-disease-a8133616.html
A condensed briefing about the PACE trial: https://www.s4me.info/threads/science-for-me-pace-briefing-document.3140/
The links between the PACE trial and “welfare reform” by Simon Duffy: https://www.huffingtonpost.co.uk/dr-simon-duffy/the-misleading-research-a_b_9726490.html