Emily Collingridge

Emily Collingridge (1981-2012) was notable for her advocacy work despite having had severe myalgic encephalomyelitis (ME) since childhood.

Illness

Emily contracted mumps in 1987 at the age of six, developing ME as a result, although it would be nine years until she received a diagnosis of ME in 1996. By this time she had become wheelchair-bound and her education had suffered as a result.

Despite her compromised health, she started a job as the Public Relations and Fundraising Manager for the Association of Young People with ME (AYME). She then worked as a project adviser for several other charities.

Emily's teens were painfully restricted and her twenties destroyed by her disease. She suffered greatly and came close to dying on more than one occasion. Emily suffered greatly from sensory stimulation which left her with surging pain, on the verge of vomiting, struggling with each breath. She could not be touched to be washed, was unable to raise her head and could not be lifted from her bed. Emily could not look out a window, watch television or listen to music.

Although on a cocktail of medications, her suffering was incomprehensible. She suffered transient paralysis and at times she was blind and mute. Emotionally she was in fear of a medical crisis that would drive her to the hospital. Unsuitable hospital environments, with lights, sound and other stimulation contributed to her relapse in 2009/10.

Death

Emily died in hospital in 2012. An inquest into her death recorded a narrative verdict, stating the cause of death as "respiratory arrest in an individual with clinically diagnosed ME due to the possible side effects of prescription drugs and aspiration of gastric contents."

Advocacy

Charity Public Relations had been Emily's career choice in school and when her disease remitted enough to campaign for ME she did so even though often it was from her bed. She worked for Home-Start. She wrote a guide book "Severe ME/CFS: A Guide to Living".

She wrote "Emily's Appeal," a history of her devastated life from a horrible disease and navigating an ignorant healthcare system. She wrote about the lack of research as being scandalous and the lack of necessary support for those who are suffering from ME.

Book

Emily had periods of her ME remitting when she could write. The book Severe ME/CFS: A Guide to Living was written during one of these time periods. This book is for patients, caregivers, friends or relatives of ME patients or anyone interested in severe ME. It is being sold at cost.

• Severe ME/CFS: A Guide to Living

Synopsis: "This book provides help to patients with severe ME (Myalgic Encephalomyelitis) as well as the loved ones and professionals caring for them."

ME Awareness: Emily Collingridge’s appeal

"This article is an open letter by Emily Collingridge, who is best known as the author of Severe ME/CFS: A Guide to Living, a guide for patients and those involved in caring for them to the various aspects of life with severe ME. Emily has had ME for 24 years, since she was just six years old, and in the last few years has been bedridden and suffered numerous major health crises; she is probably one of the worst-affected people right now."

Articles and interviews

The Guardian

ME is often dismissed – but sufferers like Emily Collingridge are dying

"On Sunday 18 March, Emily Collingridge, a beautiful 30-year-old activist and author, died after she was apparently no longer able to struggle against the chronic illness that had afflicted her since she was six."

The Telegraph

Emily didn’t 'only’ have ME

"Exactly a month ago today, an inquest ruled that Emily Collingridge, an ME (Myalgic encephalomyelitis) sufferer, died from the side-effects of prescription drugs she was taking to alleviate her terrible pain."

Obituaries

ME Association

Emily Collingridge, 1981-2012: such a short life, such a huge legacy

"Emily Collingridge, who died in hospital on Sunday at the age of 30, had hardly lived – but she leaves a huge legacy.

It will endure in the form of ‘Severe ME/CFS: A Guide to Living’, the 140-page book which she researched and compiled when all the health odds were stacked against her. It’s been on the ME Association’s highly recommended list since it was first published two years ago."

ME/CFS Australia

Emily Rose Collingridge, 1981-2012

"Today I heard the very sad news that Emily Collingridge, the author of the book Severe ME/CFS: A Guide to Living, had died. She passed away in hospital last Sunday afternoon, after a long admission. She was 30 years old and had been bedridden since her late teens, during which she had worked in a voluntary capacity for AYME (Association of Young People with ME) and the family support charity, Home-Start. She did both of these jobs from her bed, but was forced to stop when she suffered a devastating relapse in 2005."

Remembrance

Invest in ME Research

In Remembrance: Emily Rose Collingridge, 17th April 1981 - 18th March 2012

In Remembrance: Emily Rose Collingridge was published by the 25% ME Group shortly before the 4th annual day for understanding and awareness of severe ME. It includes several articles written by Emily before her death, and a description of Emily's last hospital admission, written by her mother who stayed at the hospital with her.

Learn more

• 2016, For severe ME day, August 8th, mother of the late campaigner Emily Collingridge writes article
• 2016, "Body Count: the tragic stories of severe ME" by Russell Logan

See myalgic encephalomyelitis.

See Association of Young People with ME.

Association of Young People with ME (AYME) - AYME was a UK national charity supporting children and young people affected by ME/CFS with members under 25. It's lead medical advisor was Doctor Esther Crawley. In April 2017 the charity merged with Action for ME, forming its Children's Services department run by Mary-Jane Willows.

adverse reaction Any unintended or unwanted response to a treatment, whether in a clinical trial or licensed treatment. May be minor or serious.

See chronic fatigue syndrome.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.