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Support Group for Severe M.E. Sufferers

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Lost Voices


'Lost Voices' is an exciting book and exhibition project organised by the charity Invest in ME. People who are severely affected by this illness rarely get a chance to have a 'voice' that can be heard outside of their small circle of contacts. They tend to be invisible to both the general public and those who are in a position to influence events impacting on their lives. This project enables severely ill sufferers to speak up about what has happened to them and reach a wider audience.

The book pages are designed using photos, images and written accounts of experiences provided by the individuals themselves, creating a mixture of documentary and more poetic and evocative material. It is an attractive book, encouraging the viewer to explore further and read the struggles of living with and surviving severe illness in the face of disbelief, often harmful advice, isolation and, frequently, lack of support. It brings tears to the eyes of those who know only too well the reality that lies behind the stories. It is, as one reader wrote, "saddening, beautiful, powerful, moving and angry all at once, as all tells a truth not listened to in so many circumstances."

Participants have expressed pleasure and appreciation at seeing their writing looking so professional in print and complemented by photos and images. Many describe having found the experience to be very rewarding; having the opportunity to share their experiences with others, and to constructively help to change a situation which has had such a harmful impact on so many people.

Dr Leonard Jason from Chicago's De Paul University, an active researcher into the issues around ME and CFS, has been very supportive of the project and has already written an excellent and very moving forward for the book.
Other contributors, who will write responses to and enlarge on the material, will include Neil Abbot from MERUK, Dr Chia from California, ( who as a result of his son's illness developed research into the illness leading to a cure for his son) and Jane Colby from TYMES Trust.

If there are any carers and /or 25% Group members who have not yet been able to participate, but who would like to take part in this valuable project, there may still be time.
If you would like to contribute please act quickly and leave contact details and a message or text on 0777 3861 029 and if possible email mebook@isophia.co.uk

UPDATE

Invest in ME are offering a new book which we hope will help health-care professionals, media, ME Support groups and people with ME in their quest to improve education and assist with publicising the illness myalgic encephalomyelitis (ME). The book is A4 landscape size with 120 pages, mainly in colour. Price £8.00 for UK delivery inc. p&p. To order email info@investinme.org with contact details.

 

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