Tuesday, March 30, 2010

Severe ME/CFS: A Guide to Living

[I haven't read this book but see that they have a comment from Simon
Lawrence (25% ME Group) amongst others. I'm appending the press release and
information from one of the pages which then links to a lot more
information, which I haven't posted.  The information is more
visual/"attractive" on the site. Tom]

http://www.ayme.org.uk/files/news-main.pdf

News Release
Help at Last for the Tens of Thousands Suffering from Severe ME

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".

Media Contacts
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
media@severeme.info or on <deleted>



------------------

http://www.ayme.org.uk/article.php?sid=21

Severe ME/CFS: A Guide to Living

AYME is very proud to be publishing a major new resource for patients (of
all ages) who are facing severe ME as well as the loved ones and
professionals providing their support and care. Severe ME/CFS: A Guide to
Living by former AYMEr Emily Collingridge is the first definitive reference
book written specifically to help those who are predominantly bedridden and
in need of considerable care.

"A book no severe ME sufferer should be without" Frances Goodchild, patient

"An absolute 'must-read'... It could literally change your life" Chris B,
carer

"An invaluable source of information and guidance for all health
professionals... The practical, understanding advice is exceptional" Gill
Walsh, specialist nurse

"This book has the potential to be very important" Prof Ingvar Bjarnason,
consultant physician

Emily has over twelve years personal experience of severe ME and has worked
in consultation with over thirty patients, carers, friends, relatives and
health professionals to produce a book which addresses almost every
conceivable area of life with severe ME and offers specific help for carers,
partners, siblings, parents, grandparents, friends, doctors, nurses,
occupational therapists, physiotherapists, dietitians, speech language
therapists, psychologists, social workers and home tutors.

Severe ME/CFS: A Guide to Living, which is A4 in size and contains over 130
jam packed pages, is being sold at cost for the bargain price of £5.99
including p&p
http://www.ayme.org.uk/%22http://www.ayme.org.uk/article.php?sid=21&id=295\"
  to enable multiple copy purchase. And AYME SAMs can get their first copy
half price!

In this special section of the AYME website you can learn more about the
book as well as how to order it, read about Emily, see what people are
saying about the book and find out how to help promote it to those who could
benefit. Readers of Severe ME/CFS: A Guide to Living can also download the
supplement on completing a DLA claim form (referred to in Chapter Nine of
the book).

You may also like to visit severeme.info  http://www.severeme.info/ – the
full website for Severe ME/CFS: A Guide to Living.


Buy the book!
http://www.ayme.org.uk/article.php?sid=21&id=295
It's just £5.99 including p&p, order online or download an order form.


About the book
http://www.ayme.org.uk/article.php?sid=21&id=296
Read a synopsis and view the detailed contents pages.


Readers Write
http://www.ayme.org.uk/article.php?sid=21&id=297
See what has been said about the book.


About Emily
http://www.ayme.org.uk/article.php?sid=21&id=297
Learn more about Emily.


Advertising fliers
http://www.ayme.org.uk/article.php?sid=21&id=299
Help to spread news of "Severe ME/CFS: A Guide to Living" with these
downloadable fliers.


News Releases
http://www.ayme.org.uk/article.php?sid=21&id=302
Downloadable news releases for journalists and charities interested in
reporting on Severe ME/CFS: A Guide to Living.


DLA Supplement
http://www.ayme.org.uk/article.php?sid=21&id=300
Download the Severe ME/CFS: A Guide to Living supplement on completing a DLA
form.
 
 

No comments: