Lost Voices
Providing a voice for those severely affected with myalgic encephalomyelitis

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S

10 Feb 2009

Its breathtaking very beautifully produced. I am dipping into it its great for reading in small pieces, which as I have severe ME is the easiest thing for me.

A (had ME for 30 years)

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.

A

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.

S

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.

L

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.

K

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.

Dr P

02 Feb 2009

Thank you so much for your beautifully presented, moving book.

N

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.

S

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.

R

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.! :).

E

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

A

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

M

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.

E

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.

S

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'.

M

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.....

K

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.

N

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.

J

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.

J

26 Jan 2009

Poignant and moving  -  with beautiful illustrations.  A testament to the fortitude of those portrayed.

L

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.

A

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.

M

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.

B

25 Jan 2009

I received my books yesterday. It is really good. I think it is terrific, moving, interesting and very important.

A

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.

A

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.

G

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.

S

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.

G

23 Jan 2009

The book is so moving. Thank you so much for publishing the book

K

22 Jan 2009

The book is stunning.

The contributors must be delighted to see their personal stories presented in such a sensitive & respectful manner.

A

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.

A

22 Jan 2009

Am quite overwhelmed. It is amazing!.

Oliver

22 Jan 2009

a view from Oliver, whose older sister has severe ME - click here

 

 

 

Last update: 12 November 2009