“How to Make a Disease Evaporate” – Epic Work on ME/CFS Underway
“In addition, to counter the spin, misinformation and misunderstanding that has held ME hostage, we also need a detailed, fully referenced narrative that tells the historical and political story of what has happened to ME” Mary Dimmock
Mary Dimmock is engaged in an epic work on ME/CFS and the first part is on the definitions. Her manuscript CFS: How to Make A Disease Evaporate – An examination of the evolution of the CFS definitions – can be found here.
Mary writes about her project here below:
“We all know that public health policy toward ME has failed and we, as advocates, have struggled for decades to achieve the needed change. We also know that getting the needed change is going to require congressional action. But as we have learned from the AIDS movements, congressional support alone isn’t enough. We are also going to need the attention of the public. As advocate Craig Maupin of CFIDS Report points out, political advocacy in the face of public disinterest is a losing proposition. And that’s our big challenge – telling our story to a public who doesn’t understand and isn’t interested.
Documentaries like Voices of the Shadows, The Forgotten Plague and Canary in the Coal Mine are valuable because they tell a story that makes the experience of the disease personal and vivid. In addition, to counter the spin, misinformation and misunderstanding that has held ME hostage, we also need a detailed, fully referenced narrative that tells the historical and political story of what has happened to ME and the role that issues related to definition, research funding and strategy, drug development, epidemiology and medical education have played. An approachable narrative that is unassailable in its facts. Such a narrative could make it easier for the media and others new to this disease to see the landscape that we all know and live every day. It could also serve as a background resource for our own advocacy efforts.
My son and I have been working on a paper that we hope will help fill this need. Given the definitional issues that we face right now, we decided to release the chapter on the definition as a work in progress. It can be found at this link:
Because the paper is intended as a detailed, fully referenced resource, even this chapter is long – over 30 pages plus references. Given that, I know that many patients will not be able to read it but we wanted to share it for those who may find it useful.
One final note – as noted, this is a work in progress that is intended to be fact based. We’ve also tried to find the right balance between too much and too little detail. If you do read it and see significant points that are missing or wrong, feel free to send an email with a subject line of “Paper” to email@example.com. If possible, please include the reference that supports your suggestion. I may not be able to reply to each email but will address any significant errors and omissions in the final release of the paper.
Thank you to Craig Maupin for his blog and FOIA that formed the title of this paper.
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