M.E Stories

This section is dedicated to our members who wish to share there experiences of living with ME (Mylagic Encephalomyelits). Some of the stories may be disturbing to the reader, but they are telling their own story about the reality of living with this dreadful disease, while other ones will be offering helpful ways to cope on a daily basis.

As an organization, we are here to portray the truth and reality of living with this condition and will not try to ‘cover up’ anything in order to please others

Lynn’s case has been in the news recently, not because she died and not because she had severe M.E., but because of the public interest that surrounds assisted suicide. The issue of assisted suicide is of course extremely important to me. No one should be trapped in that place where there is no escape, no choice. However, my priority is to highlight what took Lynn to that place of no escape. It was M.E. M.E. led her there, minute by minute, day by day, year by year, slowly and painfully. It destroyed her body and put her through indescribable suffering on a daily basis for 17 long years. Morphine toxicity might have been the ultimate cause of death, but it was M.E. that took her there. Read More

Extract supplied by Sophia’s mum, Criona

Sophia died from M.E. in November 2005. The day before she died I promised her that her life would help many other people. My youngest child, Sophia, suffered from severe Myalgic Encephalomyelitis (M.E.) for at least six years. This disease is also controversially known as Chronic Fatigue Syndrome (CFS). Since 1969 the World Health Organisation (WHO) has categorised M.E. as a physical neurological disease. The doctors and psychiatrist threatened Sophia with sectioning in a mental hospital if she refused to go into a particular M.E. Clinic. They carried out their threat in July 2003. The effects on Sophia’s health were devastating. She died on 25th November 2005. She was only 32. Read More