|"I can think of no other illness where such a powerful schism exists between those who suffer from it and those whose responsibility is to care for them. How can it be that an illness that affects between 100,000 and 200,000 persons of all ages in the United Kingdom and maybe as many as one million people in the United States of America is no longer referred to in medical textbooks, is not cited in medical research indexing systems and rarely features in the syllabus of undergraduate education in medical schools? Why have the experiences of these patients been largely ignored, their testimonies somewhat undervalued, even ridiculed, and their requests for assistance met often with prejudice and disbelief? An answer to this conundrum can be found in this scholarly account of the ME enigma.
Dr Lynn Michell has written a remarkable book - the product of her own experience as both an ME sufferer and a medical sociologist. For the first time, the authentic voices of people with ME are heard. Lynn Michell threads their narratives together expertly into a rich tapestry that highlights the central themes which dominate this illness: the lack of a recognised diagnosis; the scepticism of medical professionals; the lack of support from family and friends; the deserts of fatigue and pain; the loneliness involved in the search for help and empathy. These are not the voices of professionals with careers to promote; rather they are the voice of real people with terrible stories to tell. While people with ME and their carers will read this book and empathise, it should also be read by health and social care professionals for the insights that it gives".
Dr Vance Spence Chairman of MERGE
Scientific Advisor to Irish ME Trust