Providing a voice for
those severely affected with myalgic encephalomyelitis
(Please note images from the
Lost Voices pages are copyrighted)
- a view from
Oliver, whose older sister has severe ME -/smaller>
/x-tad-smaller>/fontfamily>is not just a book about ME/CFS,
rather it is a book that has been created and written by the very people
who experience the illness first hand; severe sufferers, their carers and their
The combination of photographs, images and writing found in Lost Voices
beautifully express the realities of the illness and its impact not only on the
sufferers but on their friends and families as well, giving a voice to so many
people who have been left to fight this debilitating illness in isolation.
It does not just tell one person's story or even one family's story. Lost
Voices brings together and shares the stories of many different individuals,
families, carers and friends; each story unique, each story providing an insight
into a world that has been invisible to most people for too long.
Anyone who has suffered from or is still fighting ME/CFS will find Lost
Voices a powerful and uplifting reminder that they are not alone, that there
are so many others like them, fighting for recognition, fighting for
understanding and fighting for fair and effective treatment. This is a book full
of love, courage, hope and determination.
This book is not just for those suffering from ME/CFS but is also for their
carers, friends and family members. You can share the experiences of others who
have been sucked into this hidden and isolated world. Lost Voices also
provides an invaluable way of explaining this illness and its impact to those
who are fortunate enough not to have experienced it first hand.
Lost Voices contains contributions offering insight and expertise from
leading figures in the ME/CFS research and support community; Vance Spence, Dr
John Chia, Jane Colby and Annette Whittemore - Founder of the Whittemore
Peterson Institute for Neuro-Immune disease, which is already producing
ground-breaking biomedical research.
The forward has been written by Leonard Jason - Vice President of IACFS/ME:
will help healthcare professionals and others become less judgmental, and more
tolerant and understanding of those with ME, for these are the voices of
heroes... there were moments of wonder when I realized that these patients have
something uniquely profound to share with a world so saturated with
materialism... these patients are asking us to wake up from our stupor... Their
courage and life affirming stories challenge us to act. Just as the Civil Rights
and Women’s movements focused our attention on serious inequalities and the need
for activism, so does /x-tad-smaller>Lost Voices /x-tad-smaller>
force us to recognize the needs of children and adults with
ME and to join the fight for a cure./x-tad-smaller>/fontfamily>'
The introduction to Lost Voices is an invaluable asset for anybody who
has ever tried to answer the question 'What is ME/CFS?' It examines some key
areas of confusion which have resulted in misconceptions and ignorance about the
nature and severity of the illness amongst the general public, the government
and the medical profession. Cutting through this misunderstanding, the
introduction to Lost Voices argues powerfully for a new biomedical focus
on subgroups to drive future ME/CFS research and treatment.
Lost Voices is a book to help others understand the hidden reality of
life with severe ME; a book that allows one to feel the comfort of shared
experience whether it be suffering, courage, love, hope or determination; a book
with key information about ME; a book to be moved by; a book to enjoy.
Please buy Lost Voices and use it to help fight the ignorance and
injustice that results in so many ME sufferers struggling invisibly and unheard.
The purpose of this book is to educate in the broadest possible sense and it is
not being sold for profit by Invest in ME."
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Voices - A Hidden illness -
07 February 2009