About Emily

Emily Rose Collingridge was born in London in 1981. A passionate and feisty child, she was eager and determined to enjoy everything in life. When she contracted mumps in 1987 she and her family had no idea just how much the future was going to test her strength of character.

For nine years she suffered a huge array of bewildering and worrying symptoms for which doctors could find no cause. Ignorance about ME and poor advice meant that she spent many years struggling to attend school and trying to keep up with her peers when it was far beyond her capabilities. In 1996 she finally received a diagnosis, but by this time was completely dependent on a wheelchair. Thankfully she discovered the Association of Young People with ME (known as AYME), a charity then in its infancy. Despite now being severely affected and almost entirely housebound, she threw herself into work as the organisation’s PR and Fundraising Manager. During this time she spoke to many families who were affected by ME and learnt a great deal about the condition. Her work was recognised nationally by the Whitbread Volunteer Action Awards.

At the age of 21 Emily left AYME to become a project adviser for several other charities, including Home-Start, a leading family support organisation. In 2005 she was forced to stop working due to an extreme deterioration in her health. She continued to decline for nearly two years and went through some extremely traumatic experiences before turning the corner in the Autumn of 2007. Emily remains severely affected and is almost completely bedridden.

Emily answered questions for Cheers March/April 2010, AYME's member magazine.

Why did you decide to write the book?
When I became very severely affected with ME, I felt as if I had been dropped into a foreign land – a terrifying, dangerous place for which I could find no map. I had no idea how I was going to survive. The symptoms I had felt intolerable and the practical problems that they created seemed endless and without solution. My doctors seemed to feel just as lost and bewildered as I did. For every difficulty I faced we had to experiment with different ways of coping. Sometimes we got it right, sometimes we got it wrong; it was an intense learning curve. AYME provided excellent tips for living with severe ME and AYME friends answered my questions as best they could, often providing invaluable advice. We muddled through and eventually things improved for me. It wasn’t long before I became the one who was being asked the questions. First friends wanted to know how I had coped with various problems. Then friends of friends wanted advice. The collection of notes on my laptop about different areas of life with severe ME grew and grew. I began to think about how much easier living with very severe ME might have been if someone had given me these notes at the start. They were like the map I so desperately needed. I realised that they needed to be made available to a wider audience. But I also knew that they weren’t enough; that something much bigger, much more comprehensive was required. That’s when I set about writing “Severe ME/CFS: A Guide to Living”.

Is the book entirely based on your experiences?
No. I felt it was extremely important that the book covered far more than just what had helped me. No two people experience severe ME in exactly the same way and people will respond differently to different treatments and different methods of coping. I wanted people to have as much information as possible to help them to work out the best way of living with severe ME for them as an individual. I wrote the first draft of the book based on my experiences, the experiences of friends and the advice professionals had given me over the years. With the help of AYME, I then arranged for a panel of advisors (made up of patients, carers, patients’ loved ones and professionals working with those who have severe ME) to read the manuscript and tell me what they felt was missing. At the same time, I scoured the Internet for further sources of help and information that might make a difference to those with severe ME. With the comments from the panel and the extra research I was able to write a second, far more comprehensive draft. This draft then went to another panel for comment, after which I updated the book again! Finally the book was checked by AYME’s medical advisor and “polished” with the help of an experienced health writer.

You still have severe ME; did this make writing the book difficult?
The short answer is yes! I had to pace the writing very carefully and this could be frustrating at times. It was easier at the beginning as I was just putting on paper (or rather my laptop using speech recognition software) what was already in my head. Once I had to start incorporating new ideas it was more of a struggle. The editing process at the end was probably the biggest challenge. There seemed to be lots of hurdles to overcome in writing the book – two difficult hospital admissions were particularly significant obstacles! But I had a lot of support and encouragement. The positive feedback that I got from those on the advisory panels kept my motivation high. And my mother was a constant source of practical help. How she managed to make all the editorial changes from my scrawled notes I will never know!

How have you defined “severe ME” for this book?
The book focuses on those who are completely, or almost completely, bedridden and who require help with personal care; according to the AYME ability scale this would be people with an ability level of 20% or under. Much of the content, therefore, relates to very severe ME, but there is also information for those with a higher ability level. Some people who are not very severely affected may find parts of the book distressing as it tackles a few very serious symptoms that can occur when people are at the bottom of the ability scale. It is therefore very important that anyone who reads the book remembers that not every patient experiences every problem discussed and that even the most frightening sounding of symptoms can be made easier to live with.

Why did you decide to have the book published by a charity? And, given that the book is for people of all ages, not just young people, why did you particularly choose AYME?
It was very important to me that this book was as affordable for people as possible and so I didn’t want it to be sold for a profit; I wanted to find a charity that would be willing to sell it at cost. Having worked for AYME in the past, I knew that helping the severely affected was a high priority for the charity and, as the membership goes up to 26, I hoped they would be interested in a book written for people of all ages. Obviously they were!

What do you hope to achieve with the book?
To make the lives of those affected by severe ME easier. I can’t take the illness away – no-one can do that – but through sharing what I have learnt about it I hope perhaps I can take just a little of the suffering away. I felt it was important to write something that was not just for those who have severe ME themselves or who are caring for someone with severe ME, but also for the family members, friends and professionals involved. People struggle to understand severe ME and to know what help that they can offer to someone suffering from it. I hope that this book will bring everyone together to help people with severe ME to achieve the best quality of life possible. Different readers will, I imagine, take different things from the book. Some will benefit from advice on symptom management. Others will take more from the practical solutions for day-to-day problems. Then there will be those for whom the advice on coping with the emotional aspects of living with severe ME is the most valuable. But whatever the reader is struggling with, I hope that there will be something in the pages of this book that could make a difference.

You can read more from Emily and find out how to contact her at severeme.info - the full website for Severe ME/CFS: A Guide to Living.

Remember the book is just £5.99 including p&p.

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Article last edited on Friday 19th March 2010                          Printable Version