Providing a voice for
those severely affected with myalgic encephalomyelitis
The name 'Lost
both to the fact that people who are severely ill with ME are generally not in a
position to make themselves heard, and also to the way that the prejudiced
denial of ME - as an ‘aberrant belief’ rather than a devastating physical
illness – has meant that often others are incapable of actually hearing and
seeing what is being said and shown - our voices drop into a void.
Art has the power to move people, and combined
with documentation 'Lost
Voices’ brings the situation more vividly to life.
is primarily written by people affected by severe ME- whether as
sufferers, carers or families - those very severely affected – house-bound or
bed-bound - are represented.
is a high-quality, A4 landscape size with a laminated card cover with pictures, mostly in colour.
provides the following –
provides an opportunity for people who are usually invisible and unheard to
speak for themselves, so that their situation can be seen and understood
- It clearly and movingly
shows the evidence of the devastating impact this physical disease has on
individuals and their carers and families.
- It will
bring to more public notice the plight of ME sufferers.
- It will help change a widespread lack of comprehension based on general
misinformation, vague definitions, guessed numbers and statistics, to the
development of empathy and concern for those who are so ill.
- It can
educate the medical profession, the public and others such as wider family.
- It will, hopefully,
encourage a sense of community among ME sufferers and those supporting them.
The stories and photographs are provided by carers,
families and, as far as possible, people with ME themselves. 'Lost
Voices’ represents different families, showing the
impact of the illness on all family members and sufferers and carers.
We have also incorporated a section of informative material
on ME written by experts Dr
Leonard Jason, Dr John Chia and Dr Vance Spence, and from Annette
Whittemore - founder of the Whittemore-Peterson Institute in Nevada, as well as contributions from other charities.
Lost Voices provides a unique
opportunity to hear from people with ME and their families, telling what they feel is important for
others to hear, about their situation, about their lives.
Please use the order form to order
images from the Lost Voices pages are copyrighted)
07 September 2010