Category: N&S Press

Myalgic Encephalomyelitis

by Eira Stuart

Publication Date: 21 March 2023
Nightingale & Sparrow Press

Genre: Poetry

M.E. is arguably the most stigmatized illness of this century! It stands for Myalgic Encephalomyelitis which means inflammation of the brain and spine with muscle pain Prof. Malcolm Hooper). It is a neurological-immune disease comparable with MS and polio Dr Bryron Hyde, Nightingale Foundation Canada).

However, a lack of research and funding have caused this biomedical disease to be stigmatised as a psychological/ psychiatric disorder for decades by some members of the medical profession, until research in recent years has begun to substantiate the organic biomedical nature of this disease for which formal recognition and policy changes were gained in 2015 (USA) and 2021 (UK).

I have dedicated this collection solely to raising awareness of this disease through my own journey and personal experience, in the hopes of shining a ray of understanding in to the metaphorical and literal darkness associated with this disease. It’s my most fervent aspiration to contribute to the paradigm shift regarding perception and understanding of this condition. While policies and clinical guidelines have formally changed, attitudes and perspectives have not yet fully caught up on a mainstream scale. This is a necessary breakthrough if patients are to have the medical, social, and community support they greatly deserve and require.

This collection is a labour of seven years. I began writing these poems in the dark while I was blind and paralysed in a nursing home, memorising them, then dictating them letter by letter through tracing on my carers hands over weeks, sometimes only managing a word a day. Sometimes with weeks of rest in between. To have them now in print to share with you is nothing short of miraculous and I’m truly grateful. I hope you find value, insights, and understanding in my creative offering.

About the Author

Eira Stuart is passionate about social justice and has written extensively in support of M.E. patient advocacy as guest writer for the M.E. Association. Her article M.E.; A Conundrum in Care has recently been published in nurse Gregg Crowhurst’s (a well regarded advocate nurse and expert on M.E. care) guide on M.E. care: More Notes for Carers.

Eira’s recent literary publications include featured micro poetry in Nightingale and Sparrow’s “Heat” issue press release, publication in an anthology entitled Screaming from the Silence, in support of victims of domestic violence (Vociferous Press 2020), But You Don’t look sick, an anthology to raise awareness of invisible chronic illnesses such as M.E. and Fibromyalgia (Indie Blu(e), Jand a nonfiction series of reflections on unity conscious entitled Eudaimonia. She has two published poetry collections: Sophistry (2012) and Metanoia (2020).

Eira has been nominated for Sundress Presses Best of the Net Anthology 2020 and short-listed at The Brit Writers Awards 2010.