Dialogues for ME/CFS is a new project being made with an award from the Wellcome Public Engagement Fund. When complete it will consist of a website with about a dozen new short videos, accompanied by links to existing educational materials and references.
Please leave comments about the project and the videos, but views on the disease name should be expressed elsewhere.
In making this project I decided to use the name ME/CFS to refer to the disease which was called Myalgic Encephalomyelitis in the UK, until Post Viral Fatigue Syndrome and then Chronic Fatigue Syndrome became more frequent diagnoses. Chronic Fatigue Syndrome is the name that has been used in the USA. Recently ME/CFS has become the Internationally recognised name.
Chronic Fatigue Syndrome in the UK has commonly been confused with the symptom of chronic fatigue, causing high levels of misdiagnosis and mis-characterisation of the disease as behavioural, psychiatric, MUS (Medically Unexplained Symptoms) or a ’functional neurological syndrome’.
None of the current 20 plus definitions are considered accurate enough for research purposes, or for distinguishing between different subsets of ME or CFS with different names. It is worth noting that the majority of research into the disease we call Myalgic Encephalomyelitis has been done using the name Chronic Fatigue Syndrome and doctors are more familiar with that name.
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