The Struggle To Gain Adequate Care While Living With Myalgic Encephalomyelitis (ME)




By Corina Duyn in ME Advocates Ireland.


I have been ill with Myalgic Encephalomyelitis (ME) for twenty years. But it is only in the past year, and more so in the past six months that my most basic needs are not being met, at a time when my illness has become more severe again and my health has deteriorated.

Not anticipating that I’d be ill for so long, and that my illness would so quickly result in disability, I initially received care from friends, and lived for one month with my brother and family in Kenmare. Returning to Lismore, I looked for support at home.

I was told that home help (as it was called in 1998) was for the over 65s only. Local council representation secured me a few hours of care per week. Having several severe relapses in which I found myself totally paralyzed, leading to several hospitalisations, my home help hours were increased to seven days a week, up to 4 hours a day.

This meant I was able to live in my own home, and not be taken into care.

I am immensely grateful that this intervention was presented to me by the HSE. As my GP at the time suggested, if I was taken into the local nursing home for older people I would have died.


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