What is Myalgic Encephalomyelitis Like? A Patient Perspective
A project by Pillow Writers
©2024. The authors consent to the use of material in this publication, in whole or in part, for the purposes of public and medical education.
Authored by Pillow Writers (2024).
The Pillow Writers are a group of peers who all have Myalgic Encephalomyelitis (ME) and come together to write. The enclosed essays attempt to answer the question, “What is ME Like?” The essays in this document are personal reflections of lived experiences and may not represent the feelings and thoughts of all people with ME. The enclosed essays are not intended to be fully comprehensive of the ME experience. The writers hope to expand their repertoire of essays in the future as each author’s ill body and brain allow.
For more information about Pillow Writers, please visit: pillowriters.wordpress.com
What is ME Like?
What follows are first-hand descriptive accounts of Myalgic Encephalomyelitis (ME) from writers who have the disease, covering prevalence and impact, post-exertional malaise, fatigue, cognitive impairment, and pain. Their stories are illuminating, even disturbing, but the authors hope their stories can be used to improve public and professional understanding of the condition. The descriptive accounts are provided in approximate 100-word and 1-2 sentence formats for ease of dissemination to the public.
Prevalence and Impact
100-word version:
ME? Resting in bed? How bad can it be?
Bad. Very bad, in fact. Look at Quality of Life, for example. This can be measured using internationally recognised questionnaires and when compared to those with twenty other conditions, including cancer, renal failure and schizophrenia, people with ME have the worst life quality. Rock bottom. Not surprising, given that a quarter of those with ME are either housebound or bedbound.
It’s bad, but is it common? Yes. Six times as common as multiple sclerosis. Twice as common as Type 1 diabetes. Even more common than rheumatoid arthritis.
One sentence:
ME is a nasty, misunderstood disease having a far greater impact on sufferers’ quality of life than many other serious diseases, including some cancers, and with 1.3% of the adult population affected by it, it’s not uncommon either.
Stuart, UK, 2024
Post Exertional Malaise
100-word version:
Today, my body jolts with each excruciating electrical arc in my brain, like lightning bolts one right after another. I can no longer tolerate light or noise. My brain has been altered since yesterday. I no longer know it, and I no longer know you. Not in the way of yesterday. My memory has forgotten your name, the conversation that gave us joy, and the waitress’ face. I only know that yesterday, a good ME-day, I existed with you. Today, I exist with darkness, isolation, and pain. So much pain.
You only see me on a good day. The day after is when you see ME.
Two sentences:
You only see me on a good day. The day after is when you see ME.
Jennifer, USA, 2024
Fatigue
100-word version:
Imagine your energy as a battery which is broken. It will only charge to 15% no matter how much you eat or sleep. If you exceed your energy quota by even a kilojoule you ‘crash’ and your battery will not recharge – for days, weeks or months. You are incapacitated until you recover to your 15%. Every day is a complex calculation, accounting for how depleted you are and what energy you will need for tomorrow and the next week – how much energy can you use today? Every day is a practice of accepting the frustration of living with ME.
Two sentences:
Imagine you must operate on 15% energy, at your best. If you go into the red it can take days, weeks or months to recover, and only to 15%.
Una, Ireland, 2024
Cognitive Impairment
100-word version:
I want to have a conversation. I want to listen, to think, to talk and be heard, but ME will not cooperate. It begins with the thought process. What is the word that I want? Does this word mean what I think it means? I’m in complete confusion, barely able to string thoughts together and totally unable to form those thoughts into spoken words. Mostly, I sit, alone and silent. Except when I must, I no longer communicate with people who don’t understand ME. I used to be articulate and loquacious. Now, I’m not even sure if those are the right words.
Two sentences:
My thoughts are mired in quicksand. Before I can speak one aloud it has slipped below the surface into oblivion.
Jenny, USA, 2024
Pain
100-word version:
Pain swallows my day. I overdid it yesterday. Again. This pain I feel from ME is a burning aching throb in my bones, my joints, my muscles, my head and my skin. Part of the difficulty is that the pain is so widespread. It’s exhausting. I spend the entire day in bed. It makes my limbs feel heavy, like they’re full of molten lead. It hurts to move. It hurts to lie still. Anti-inflammatories don’t help. Usually, the pain lasts three days. By day two, I am a cauldron of pain. Only rest and time help.
One sentence:
When I spend more than an hour out of bed each day, I’m a cauldron of wide-spread throbbing pain.
Lisa, USA, 2024
Lucinda Bateman, MD, is a renowned clinician, researcher, and educator. Her Johns Hopkins University Medical School training instilled an approach to care that she has employed throughout her career - the patient comes first and the unknown or unexplained does not equate to a lack of proper and compassionate care. Since starting her own practice in 2000, she has served on six boards or committees, been the principal investigator for 45 studies, authored/coauthored 40 journal articles, served as adjunct instructor and adjunct assistant professor in the University of Utah Departments of Preventative Medicine, Internal Medicine, and Anesthesiology, and lectured around the world.