About This Website
Claire developed ME in 1993 when she was 10. Over the next six years she experienced a general decline in her health until she became housebound. After taking her GCSEs at home the overload on her body finally took its toll and Claire became bedbound. Over the next six years Claire experienced the many sides of severe ME. Her different symptoms meant the majority of doctors who had difficulty understanding the illness in its less severe forms were completely perplexed at the severity of her illness.
Discovering that the medical profession could offer almost no help to her Claire’s Mum gathered advice from other sufferer’s carers on ways to deal with the illness and its many varying symptoms. Claire decided that a book on severe ME was needed, which sufferers could use as a reference guide on how to cope with the many aspects of life with severe ME.
Over the next three years Claire slowly dictated the book. Unable to read or write due to the severity of her illness she dictated a couple of sentences each day to her Mum who wrote it down for her. Once completed Claire called on family and friends to help type up the mass of papers.
Claire approached the Association of Young People with ME (AYME) who agreed to print the book now dubbed Surviving Severe ME. They achieved funding from the Co-op to pay for printing and free distribution to all of AYME’s severely affected members.
Claire’s work with the severely affected continued after writing the book. She was already volunteering for AYME as a Regional Contact; but now took on the role of Severely Affected Members (SAM) Advisor, despite still being severely affected herself. She worked her way up to becoming coordinator for the team involved in running all services for the severely affected.
Claire’s experiences have lead her to realise the voluntary sector is where she sees her future and has now set up her own voluntary organisation called Holidays From Home sending free virtual holidays to people who are bed or house bound and are unable to travel due to illness or disability.