Changing The Narrative #1: Exploring A New Approach To Strategic Communications In The ME Community

Valerie Eliot-Smith



By Valerie Eliot Smith in


The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times. 

IntroductionI strted writing this blog in 2012. For several years since then, I have kept starting drafts on a particular topic, only to then abandon them because the subject-matter is complex and contentious. Whilst I have written about the topic as part of many other posts, I have not published before now a series of posts which was devoted to this subject alone.

The question is this: how should the myalgic encephalomyelitis (ME)community in the UK address its reputational problems within the media environment and the wider political, medical and social context?

As regular readers of this blog know, I have lived with the illness ME, in varying degrees of severity, since 1981. The stigma attached to the illness and the treatment of many patients in most countries is shocking, despite occasional official platitudes purporting to demonstrate real concern about the situation. Sometimes these official pronouncements appear to be genuinely well-intentioned. In fact, they usually represent an unsupportable denial of the illness’s history and its profound effect on the lives of millions of patients worldwide.


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