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S |
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10 Feb 2009 |
It’s breathtaking – very beautifully produced. I am dipping
into it – it’s great for reading in small pieces, which as I have severe ME
is the easiest thing for me. |
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A (had ME for 30
years) |
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08 Feb 2009 |
The book surprised
me - it's really professional, and I'm glad it's out there. It's all that
anyone would want when they're needing a community; because there's lots of us
out here. Everybody is living in very extreme circumstances. |
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A |
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03 Feb 2009 |
Yesterday I received
my copy of 'Lost Voices' and I am writing to say thank you, and to tell you just
how spectacular it is! It's marvellous! What a wonderful work it is!
The photographs are so colourful and give the reader real insight into this
disease in a way that words can't express. The poetry and prose is so excellent,
explaining so clearly that this disease has such devastating effects for both
sufferers, families, friends and employers. It highlights the difficulties with
the medical profession, the DWP and government ministers.
It grapples with the
nonsense theories from psychiatrists, explains some of the disease process from
those who are so knowledgeable and notes the issues of vested interests.
It is lively, interesting, varied and harrowing all at once.
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S |
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02 Feb 2009 |
I have just finished
reading Lost Voices. I found much of it heart-breaking, but also full of great
courage. You have done a wonderful thing for sufferers of ME, their families and
carers. I hope the book will be read by many people who are currently
misinformed or apathetic, and that changes will start to take place. I found it
very moving.
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L |
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02 Feb 2009 |
Thanks
so much for sending the copy of Lost Voices, it's an amazing thing to have
done... It's a very well judged mixture of medical / scientific material and
case /study/ witness stuff, including of course pictures which as ever are worth
a 1000 words. I thought the introduction was extremely helpful, and very
necessary since that ground simply didn't get covered in any other way.. Thank
you so much for the book, I am looking forward to lending it to one or two
people who should be interested.
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K |
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02 Feb 2009 |
I just want to say
that I think Lost Voices is superb, you have produced a stunning book.
All your hard work has certainly paid off, this book will be an enormous help in
getting through to people just how devastating the illness can be. Well done and
thank you.
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Dr P |
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02 Feb 2009 |
Thank you so much for
your beautifully presented, moving book.
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N |
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02 Feb 2009 |
We
have just received our copies of Lost Voices, and I had to write straight away,
on behalf of us all, to try and convey our feelings.
'Thank you' seems inadequate when considering what you have all put into this
incredible book, but it is said sincerely.
The result of your vision and effort is a book that is stunning, powerful and
extremely moving. I have never seen anything like it and we are all proud to be
part of this landmark book. Thank you so very much for giving us a voice. You
have done something truly amazing.
It is in the hope of educating both doctors and the general public that Lost
Voices has been created. It is a high-quality, beautifully presented book, with
written accounts alongside colour photos. There are also contributions from
experts in the illness, doctors from both the UK and abroad. As the book focuses
on the long-term, severely affected (including memorials to those who sadly have
not survived), it is not something I would recommend to anyone newly diagnosed.
Despite its hard-hitting nature, however, I feel Lost Voices is moving rather
than depressing. There is a strong message of strength in adversity.
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S |
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02 Feb 2009 |
I Really I just wanted
to say thank you so much for the fantastic Lost Voices book. I feel so
privileged to have been able to take part in such a brilliant book. It is so
professional and eloquent that it can't fail to have an impact. I'd very high
hopes for the book as we'd put so much into it from our end for our small bit
and I knew some of how much you were putting into it. But I have to say that
when I received my copy it far exceeded any of my expectations. I was blown away
by it! It is going to take me some time to read but I will definitely read every
bit of it!
..I'm very grateful to have been able to take part in the project. The amount of
time, energy and devotion you've poured into the book really shines through. I
hope you realise what you have done for us severe ME sufferers. We would be
quite lost without people like you fighting our cause. For the first time I feel
like I'm no longer being ignored because through the book I will be heard - that
is quite a feeling.
THANK YOU.
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R |
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30 Jan 2009 |
I received my copies
of Lost Voices and all I can say is WOW.
You have done an outstanding job with this book. It is great to look at,
brilliant layout and ME stories and pictures. A big thank you for making this
happen. The book is a brilliant. I am ordering loads more now (I only ordered
4)
With much appreciation for your herculean effort/time/dedication and goodness
knows what else. I LOVE THE BOOK.! :).
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E |
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30 Jan 2009 |
It's so good! ... from
the little bit I've managed to look at...I've flicked through it...
It's beautifully presented. creative and artistically designed.
Well done... you have done a brilliant, brilliant job. thank you! xxxxxxx
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A |
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29 Jan 2009 |
Wow!! Thank you for
all your hard work in producing 'Lost Voices'.
I've just dipped in
and out of it but think it is brilliant. Deciding to take part was a really big
thing for me - as I'm sure it was for the others - but I'm so glad I did, Seeing
my work in print, in such a professional book gives me a real sense of
achievement - not something easily attained with severe ME.
I've just read a
handful of the stories, but in each one I've seen something of myself and
understood what they've said. That in itself has been a comfort and reassurance.
All the entries have been powerful and hard hitting and, while relaying the
harshness and reality of severe ME have also conveyed the power of the human
spirit, showing that people can survive and how they can still have strength and
hope despite being so limited.
I hope SO much that our experiences will help change peoples perceptions of ME.
I have a long list of
family and friends who I will send the book to. THANK YOU AGAIN
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M |
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29 Jan 2009 |
A huge
CONGRATULATIONS!
Well done, what a
fabulous book - not just because I'm in it!!! - I've read bits here and there
and it certainly packs a punch. I'll be handing a book over to ... and there's a
good few people I know who have requested it, and the library better not refuse
to take this one!!
...Everything runs
beautifully together.
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E |
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29 Jan 2009 |
...the
traumatic experience of having ME so severely that my life was under threat for
a prolonged period of time. As a result I am struggling with memories of all I
went through and cannot face looking at the book. In time I will though and I
congratulate you on you achieving your goal.
Whenever I tell my story people are horrified, but rather dismiss the idea of
severe based on the idea that such severity must be rare. Lost Voices
highlights that severe ME is not rare and that it therefore needs a great deal
of attention both in terms of research and service provision.
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S |
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29 Jan 2009 |
This book is so
beautiful and inviting : a testimony to those in this awful condition. It makes
me even more strongly aware of the need for determined investigation and
questing diagnosis rather than consigning people to the dustbin label, 'All in
the mind'.
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M |
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29 Jan 2009 |
Needless to say I
have only read a few pages but what an impact it will make upon the reader. I
think I'll need a box of tissues to get through it. I have to say that even
before I opened the book I was blown away by the cover - how thought provoking
it is - stonewall, primitive, formless, grey.....
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K |
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29 Jan 2009 |
As I looked at my
friend's copy of the book tears filled my eyes. Tears of sorrow for my friend
who is in her 20's and has been bed bound now for over 4yrs. Tears for her Mum
and her Dad who are exhausted having nursed her on their own since she was first
ill which is about 6yrs now. Tears for her elder sister who bottles up her
feelings as she doesn't want to add to her parents load.
I also felt immensely grateful that my daughter, after 8yrs of having the
disease, is now 90% better.
This is a fantastic book, as it really explains the illness.
I hope it will wipe
out the "pull yourself together" & "this is just psychological" attitudes that
still exist.
The sooner every GP and School Doctor reads it the better, it can be such a
struggle to get someone to believe in the illness.
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N |
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27 Jan 2009 |
Thank you for this
brilliant book. Such powerful accounts of ME. Overwhelming, tragic, yet brimming
with courage and hope. Visually stunning. It should be compulsory reading for
all GP's, medical students.
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J |
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26 Jan 2009 |
This beautiful and very moving book will surely change people's perceptions of ME/CFS for ever. It is a wonderful testament to the courage and resilience of so many desperately ill children, young people and adults, who battle every minute of every day with this hugely debilitating illness, and to the patience and dedication of their families and carers.
The photographs and paintings give an added dimension to the book and sometimes speak louder than words. Through its simplicity and honesty this book cannot fail to be a huge agent for change for the treatment of all those with severe ME/CFS.
A million "Thank You's" to everyone involved in this book in anyway for all you are doing for all of us with ME/CFS.
I am moved to tears.
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J |
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26 Jan 2009 |
Poignant and moving
- with beautiful illustrations. A testament to the fortitude of those
portrayed.
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L |
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26 Jan 2009 |
I am proud to have
contributed to the book Lost Voices. It is such an important book because it
empowers the hidden, persecuted and neglected people with severe ME. It gives us
a voice and shows the world something of who we are. It is also a beautiful
expression of creativity and determination in spite of severe disability and
illness.
It is an incredible piece of work highlighting both the injustice and the need
for biomedical research and funding. It also shows us we are not alone in our
fight for Truth and Justice. We are many who suffer - our cause deserves to be
heard. This book therefore brings hope of being heard and hope for a much needed
change of attitude - I also hope it inspires those people who read it who are
not ill to take action to make a difference to the current situation. I hope it
also brings understanding and affirmation. We should all be proud of what we
have achieved. - a moving and powerful statement by some of the most hidden and
poorly treated by society , the people who know and care for them and some of
the medical people who aim to make a difference.
I want everyone to read this book. It must surely have a huge impact.
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A |
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26 Jan 2009 |
I've just finished
reading my copy of 'Lost Voices' which I received yesterday (I really should
have put it down sooner, as I now feel as dizzy as a blond on a roundabout! but
it was so compelling I was spellbound).
There are no words to describe my joy at finally 'hearing' the voices of all the
brave, kindred souls who battle this disease every day; my despair at the lack
of care, help and resources we all endure; my anger at the disbelief, neglect
and isolation we have suffered and continue to suffer and my pain at all that
has been lost, by both sufferers and their friends and families, to severe ME.
Their stories are my story and I cried in solidarity, empathy and hope that
those at the severe end of the ME spectrum will finally be placed where they
belong - at the forefront of biomedical research and top of the care agenda.
I know how much this book has been a labour of love for you and "thank you"
seems a totally inadequate way of expressing my gratitude for your (and your
family, friends and colleagues) long months of dedication to this project. We
will all be forever in your debt.
I am awed by the professionalism of the book and I defy anyone to remain unmoved
by its content.
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M |
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25 Jan 2009 |
I am delighted with
this beautifully presented book. It really brings home the harrowing reality of
living with severe Myalgic Encephalomyelitis and I wish all professionals
concerned with the illness could have a copy. Congratulations to all concerned
in compiling it.
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B |
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25 Jan 2009 |
I received my books
yesterday. It is really good. I think it is terrific, moving, interesting and
very important.
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A |
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24 Jan 2009 |
Just
got Lost Voices today and think you've done an absolutely brilliant job, so well
done for all your hard work. No one can be anything but deeply affected by all
the stories, poems and artwork.
Well done again.
It's a book that's
been needed for a long time.
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A |
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24 Jan 2009 |
Lost
Voices arrived yesterday.
I dived in and read all the stories at once - so much pain - I felt sad and a
little disturbed.
No matter what as
happened to me I still find it difficult to read about young people struggling
with this illness.
Today - I felt differently reading the book - I had a sense of community - of
how hard we are all working to educate people about ME - of how much survival
spirit is portrayed in the stories.
Thank you once more for putting this project together.
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G |
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24 Jan 2009 |
Such
an extraordinary book; nothing else comes close to it in the ME field, in my
opinion, for it is much more than words; this is to plunge deeply into the
sights and sounds of an unseen world.
It is a journey into ME in all its aspects. This book educates by offering a
superb overview of the political and medical issues. It inspires by its heroic
focus and it uplifts by its beauty. No one could read this book and still
believe in the psychiatric approach to ME.
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S |
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23 Jan 2009 |
I received my copy
yesterday and my first impression was "Thank goodness! Something that finally
shows what it's really like."
It's a powerful, hard
hitting book and if it doesn't make people sit up, take notice and act I'm not
sure anything will! I feel like I've had the opportunity to take part in
something very special that will hopefully make a positive big difference.
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G |
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23 Jan 2009 |
The book is so moving.
Thank you so much for publishing the book
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K |
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22 Jan 2009 |
The book is stunning.
The contributors must be delighted to see their personal stories presented in
such a sensitive & respectful manner.
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A |
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22 Jan 2009 |
I have to say, it was really emotional to just flick
through it - I am going to have to read it in small chunks I think! But that
says so much in itself - to see the illness I have portrayed in such a real but
quietly true way just blew my mind - I'm not used to seeing the truth of ME in
black and white like that. Thank you for doing this - that's why I support
Invest In ME: you do what you do so well and your message is so genuine and
real.
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A |
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22 Jan 2009 |
Am quite overwhelmed. It is amazing!.
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Oliver |
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22 Jan 2009 |
a view
from
Oliver, whose older sister has severe ME -
click here
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