A voice for those severely affected with myalgic encephalomyelitis
In 2009 the charity published and distributed the unique book on ME, Lost Voices from a hidden illness, which was compiled by Natalie Boulton and highlighted the situation of those severely affected by ME and their families.
This book was ordered by patients, support groups, healthcare staff and researchers in twenty countries.
Invest in ME ordered two batches of the book during the time it was available.
Lost Voices was also sent to medical and public libraries.
Invest in ME self funded the cost and distribution of nearly 250 copies of Lost Voices to politicians, journalists, television and radio presenters, doctors, ME advocates, healthcare staff and to others whom we thought would help raise awareness of ME or be instrumental in changing perception regarding ME.
Lost Voices has been included in study material for courses on 'The Chronic Illness Experience' at De Paul University, Chicago, USA, an important centre involved in ME/CFS research where Invest in ME have offered to supply the book for free for future courses.
The charity sent the book to two prime minister's wives.
Via one of our great supporters in the USA a copy of Lost Voices also found its way to the White House.
Lost Voices has met with widespread appreciation from patients, carers, family, friends, doctors, consultants, researchers and MPs concerned about the plight of sufferers. At the end of this article are some of the comments we received from readers of the book.
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.
The book was 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 was a high-quality, A4 landscape size with a laminated card cover with pictures, mostly in colour.
The book provided the following -
- 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 showed the evidence of the devastating impact this physical disease has on individuals and their carers and families.
- It brought to more public notice the plight of ME sufferers.
- It helped 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 educated the medical profession, the public and others such as wider family.
- It hopefully encouraged a sense of community among ME sufferers and those supporting them.
The stories and photographs were provided by carers,
families and, as far as possible, people with ME themselves.
' Lost Voices’ represented different families, showing the impact of the illness on all family members and sufferers and carers.
We also incorporated a section of informative material on ME written by experts including Dr Leonard Jason and Dr John Chia, and from Annette Whittemore - founder of the Whittemore-Peterson Institute in Nevada, as well as contributions from other charities.
Lost Voices provided a unique opportunity to hear from people with ME and their families, telling what they felt was important for others to hear, about their situation, about their lives.