Severe ME: Notes for Carers Paperback – 10 May 2015

Greg Crowhurst has done great work in opening our eyes to the unbelievable suffering experienced by people who have severe or very severe ME, the theories about it, the myths, the vast amount of biomedical research done on ME/CFS despite appallingly low levels of public funding provided both in the US and the UK - although little has been done on those patients who are too ill to participate in a trial. He writes in detail about the extraordinary levels of devotion and sensitivity. required from carers. He also gives us a detailed account of abuse of these patients, especially Karina Hansen. For me, as a patient, advocate and author re ME/CFS, his book illuminated an aspect I had been unaware of...the frequency of intermittent, variable and often long-lasting paralysis in this illness. The polio connection seems stark, and suggests that the damage caused by exertion may be linked to viral resurgence. This is a challenging read - we naturally shy away from intractable, unremitting suffering...much easier to believe it's not real, could be alleviated, or to blame the patient...all-too familiar responses to those of us with ME/CFS. The reader courageous enough to deal with this reality will find this book fascinating, illuminating, ultimately rewarding. And will come away with deep respect for the author.

A great reference book for anyone who wants to know more about myalgic encephalomyelitis, especially in its most profound and severe form. There are plenty of stories and information from sufferers and their carers to get a good insight into the truth of this very serious disabling disease. And the book is full of useful advice and information on how to treat and care for people with myalgic encephalomyelitis.I would recommend this book as an essential reference book along with Caring For The M.E. Patient by Jodi Bassett and Missed Diagnoses: Myalgic Encephalomyelitis by Dr Byron Hyde.

A great book which will help anyone to understand what it is like to have severe ME. The severity of the symptoms and the impact on the individual are clearly laid out. An invisible illness requires a great deal of understanding. It would be helpful too for anyone caring for someone during a relapse of ME where they normally have moderate symptoms. It is based on the experience of both people with ME and their carers.

Excellent book. If you want to know about ME this book will tell you everything. 5 star

This was bought for a friend.

I have found a wealth of information and valuable support in this wonderful book. My role as a carer has certainly been enhanced with the knowledge obtained from ongoing reference to this easy to read gem of a book. Greg has used his first hand experience as carer to his wife Linda, to provide this comprehensive and easy to understand resource for carers to severe M.E. patients.I highly recommend this book .