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Severe ME/CFS: A Guide to Living
Tuesday 6 April 2010
Help at Last for the Tens of Thousands Suffering from Severe ME
News Release – Embargo until 29/03/10
From next month, extensive practical help will at last be available for the many thousands of people battling ME in its most life destroying form, thanks to a determined woman who is herself extremely ill. Emily Collingridge, 28, has written the first reference book on severe ME to exist in the UK. “Severe ME/CFS: A Guide to Living” will be launched on the 29th March 2010 and has already received extensive praise in previews.
Healthcare professionals are hailing the book as an important development in the management of severe ME/CFS whilst patients and carers are saying it is exactly what they have been waiting for and will be positively life changing.
There are thought to be between 60,000 and 120,000 people with severe ME (note: ME is also known as Chronic Fatigue Syndrome or CFS) in the UK. That means that at least 1 in 1000 of the UK population are either house or bedbound and dependent on others for care as a result of ME/CFS. Patients suffer a wide range of symptoms, including crippling pain, intense flu like malaise, hypersensitivity to sound, light and touch, cognitive dysfunction, transient paralysis, abnormal exhaustion, extreme nausea, weakness and more. They can be left unable to sit up, to watch television, to eat, to speak and even to recognise loved ones. Yet, despite the degree of devastation caused to so many, to date there has been little easily accessible information available to patients, carers and even medical professionals on how to cope.
Emily Collingridge, from London, learnt the hard way. She became ill 22 years ago, at the age of 6, and has now had severe ME/CFS for 12 years. At her worst she was blind, mute, doubly incontinent, tube fed and unable to move at all. Rare complications brought her close to death. Desperate to make severe ME/CFS a less traumatic experience for others, Emily has spent the last two years researching and writing “Severe ME/CFS: A Guide to Living”.
It is the first book to bring together comprehensive knowledge and advice on all aspects of life with severe ME/CFS from a large number of patients, carers, loved ones and professionals with the aim of helping patients, carers, loved ones and professionals. It is backed by a number of top experts in the field of ME, including the highly respected and experienced specialists Prof Tony Pinching and Dr Alastair Miller.
The book is being published by the charity the Association of Young People with ME (though is written for and about adults of all ages as well as children and young people). It is being sold at cost as both Emily and the charity are anxious for it to reach as many people as possible.
Mary-Jane Willows, CEO of the Association of Young People (known as AYME), says, “No-one could fail to be impressed by what Emily has achieved with this book. Her own ME has, at times, been shocking in its extremity and she continues to suffer daily. How someone who still needs 24 hour care and high doses of morphine can produce a book of such quality and value is quite astonishing”.
If you would like a press pack (containing facts about severe ME/CFS, a synopsis of the book, the author’s story in her own words, three patient case studies, comments on the book from patients, carers and professionals and images for reproduction), if you would like to interview Emily Collingridge/ another patient/ a carer/ a professional or if you have any questions, please contact Jane at firstname.lastname@example.org or on 020 8670 1502.
The above news release and the book's table of contents can be downloaded here:
The book has a website: www.severeme.info.
More information about the book can be found on the AYME website.
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