Lost Voices

Providing a voice for those severely affected with myalgic encephalomyelitis

The name 'Lost Voices’ refers 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.

'Lost Voices 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.

The book is a high-quality, A4 landscape size with a laminated card cover with pictures, mostly in colour.

The book provides the following –

  • It provides an opportunity for people who are usually invisible and unheard to speak for themselves, so that their situation can be seen and understood more clearly.
  • 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 Lost Voices.   Lost Voices Order

(Please note images from the Lost Voices pages are copyrighted)



Last update: 07 September 2010