Dialogues for a neglected illness – or Dialogues for ME/CFS is a new project being made with an award from the Wellcome Public Engagement Fund. The project is currently a work in progress and will consist of a website with about a dozen new short videos, accompanied by links to existing educational materials and references.  The videos will address different aspects of the disease,  including – diagnosis, various management and treatment issues, Severe ME and the support doctors can provide, key symptoms described by patients in their own words including short and long term experiences and differing severities, patient advocates’ concerns, and the broader historical, social, medical and cultural context for the disease. It will create a resource which patients can use to help doctors and other health professionals, educators and research professionals, understand more about this disease and the issues involved.

Myalgic Encephalomyelitis /

Chronic Fatigue Syndrome

‘ME/CFS is a serious, chronic, complex and systemic disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is “real”. It is not appropriate to dismiss these patients by saying, “I am chronically fatigued, too”.’

Conclusion to the US Institute of Medicine report in 2015 – Beyond ME/CFS: Redefining an illness

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