Severe ME/CFS:
A Guide to Living

Chairman and Coordinator of the 25% ME Group, Simon Lawrence

After many years of being housebound and bedbound with ME, Emily Collingridge has put her heart and soul into this book, which should prove an invaluable resource for other people in a similar position.  The section on obtaining a wheelchair has some very practical advice, and the ideas on how to contact your carer will be very useful to anyone having trouble finding a suitable method.  These are two areas which are essential for the quality of life of patients and for which it can be extremely difficult to get relevant advice.

It is the first time that I have read the reassurance that ‘Patients should not be overly concerned with muscle wastage, as muscle cells do not disappear and muscles will return to normal in the future.’  I so wish that we had been given this knowledge near the beginning of my daughter’s illness, instead of the veiled threats from doctors which we did receive.  It would have saved years of a deep underlying worry about whether we should be approaching the illness differently.  For me, this book would have been worth buying just for this one sentence alone.  The section about eating and maintaining weight contains very many helpful points, and will be extremely useful for people struggling to get enough energy to eat.  There is also comprehensive advice on tube feeding which, coming from an expert patient, is invaluable for those who find themselves having to consider it.

For people who have a friend ill with severe ME there is a section which is very thoughtful and compassionate, containing practical advice which will help to keep such relationships alive.  This is so important for the mental well-being of both the patient and their friend, and I would show it to all people who were in regular contact before the illness started, or before it became severe.   It is disappointing that the book does seem to support the NICE guidelines*, which the 25% ME Group have not supported.  The group would not agree with this approach to the management of the illness, but nevertheless there is much to applaud and plenty of valuable information contained in other sections.  Emily Collingridge has made good use of her experiences in order to make life easier for people who are severely ill.  It will encourage patients to know that someone has been this ill and got through very difficult times yet managed to write this book.

*Note from the author: it has not been my intention either to support or denounce the NICE clinical guideline on ME; I wanted only to provide information from the guideline which some patients have found useful in obtaining the care that they need.

Founder of AYME, Jill Moss

As the Founder of the Association of Young People (AYME) I am immensely proud that we are publishing this excellent and highly informative book. I cannot think of any aspect of dealing with severe ME that Emily has not covered within the pages. The guide uses a highly practical and well-researched approach to everyday problems, with a positivity and expectation of a brighter future, which has always been the cornerstone philosophy of AYME.

Emily was an exceptional volunteer for us during the early years of AYME, working extremely hard despite her intense limitations. She has now used the wide experience of her long struggle with ME to write a comprehensive and enormously helpful book, which reaches out to all ages.

Coordinator at the Family Fund, Clare Kassa

The book provides lots of detailed information which is really helpful and specific to people isolated by ME in its most severe form.  All the information is provided in one place, it is practical and thorough for both families and professionals alike.  I particularly like the summary pages which give the bitesize information at a glance, which is so helpful for people to access who may be overwhelmed by their situation and information needs.

For me this book highlighted further the lack of awareness myself and my colleagues may have about the extent of the impact ME may have and further highlights the fact that we don’t receive applications at the Fund from this group of children and young people.  I am sure we are not alone in this lack of knowledge and your book will certainly help raise the profile of ME amongst the voluntary and health sector.