Severe ME : Patient Surveys

It is striking how much the experience of the severely affected is comprehensively ignored.

As an example, in conjunction with the 25% Group we poured heart and soul into doing these two rare regional and national surveys of people with Severe ME, to try to affect change locally for a biomedical service in Norfolk and nationally for the Gibson Inquiry, yet they are never quoted.

This publication is an attempt to rectify the situation.

 The voices in this document, still unheard , are of immense importance; their experience of ME is infinitely more extreme than the mainstream, many of whom may not have Myalgic Encephalomyelitis in the first place.

These surveys reflect an almost total lack of understanding of this marginalised group.

It is to the NHS’s shame that people with Severe ME still receive little to no service or support.

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