Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
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New book, "Severe ME/CFS: A Guide to Living", by EC (severely affected PWME)

Discussion in 'General ME/CFS News' started by leelaplay, Mar 30, 2010.

  1. leelaplay

    leelaplay member

    Tom Kindlon posted this to CO-CURE today

    New book, "Severe ME/CFS: A Guide to Living", by Emily Collingridge (severely affected PWME)

    [tk: 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]

    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

    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 authors 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

    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\"
    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 the
    full website for Severe ME/CFS: A Guide to Living.

    Buy the book!
    Its just 5.99 including p&p, order online or download an order form.

    About the book
    Read a synopsis and view the detailed contents pages.

    Readers Write
    See what has been said about the book.

    About Emily
    Learn more about Emily.

    Advertising fliers
    Help to spread news of Severe ME/CFS: A Guide to Living with these
    downloadable fliers.

    News Releases
    Downloadable news releases for journalists and charities interested in
    reporting on Severe ME/CFS: A Guide to Living.

    DLA Supplement
    Download the Severe ME/CFS: A Guide to Living supplement on completing a DLA

  2. Robin

    Robin Guest

    An article about the author:

    Good job to her for writing a book!

    Another horrific account of GET destroying someone's life:

    I know there must be some extremely severe (diapers, feeding tube) cases in the US but I never hear about them. All of them seem to come out of the UK. Does anyone know of a US case?
  3. leelaplay

    leelaplay member

    I'm astounded that a book like this, or a press-release about it, would spout dangerous nonsense like this - GET and CBT have NOT been scientifically proven of value for ME/CFS; instead they've proven neutral or harmful.
  4. Dr. Yes

    Dr. Yes Shame on You

    Could the association with AYME have any (negative) significance? I know little about them, except what some forum members from the UK (and thereabouts - you know who you are) have posted or told me.
  5. Dolphin

    Dolphin Senior Member

    That quote is from the article:
    It has nothing to do with the book except that Emily (the author) was interviewed for it.
  6. Min

    Min Guest

    Does this book benefit AYME in any way? If it does, I shall not buy it.
  7. Amy


    United Kingdom
    I've just looked at the website for this book. It states that they're selling it at cost price, and neither the author or AYME will make any money from it.

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