Showing posts from July, 2018

It is not about ME, it is not about Severe ME

Stonebird Response to NICE Guideline draft Scope Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management.  General Comment This Scope is disturbingly very different from the previous draft scope. It has ignored, for example, most of what we recommended as a Stakeholder previously in conjunction with the 25% ME Group; it is hard to imagine that this Scope is a reflection of  the concerns that the ME Community has been expressing throughout the consultation period so far. The Scope certainly does not reflect what we would expect it to, after so much input,  nor does it represent Severe ME at all, which is not recognised as a distinct group in the document; how then can  people with Severe ME be confident that their illness is understood, recognised  or that  any recommendation will be safe? Fundamentally this Scope is about a heterogeneous group of people primarily with Fatigue still, not the WHO classified neurological disease, Myalgic