Emily Rose Collingridge, 1981-2012

Please note: Emily’s mother has requested that her appeal from 2011 be reposted. I posted it here at the time and readers are invited to read the appeal.

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 (the Association for 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.

After her health improved somewhat (although she was still bedridden and in great pain), she wrote her book on severe ME, with the co-operation of experts including Dr Nigel Speight, and numerous friends in the ME community including fellow sufferers and carers. It was published through AYME which sold it at cost to most of those who bought it, and at a subsidised price to severely affected members of AYME. The book received widespread acclaim, including from the 25% ME Group which is opposed to AYME’s position on matters such as the NICE Guidelines (the PACE trial had not been published by then). Having corresponded with Emily’s mother Jane and others on the Facebook group set up to promote the book, it was clear that the Collingridges subscribed to none of AYME’s revisionist views about ME; they regarded it as a neurological disease and expressed dissatisfaction at the lack of biomedical research and the influence of Prof Simon Wessely and others like him. They also discussed the possibility of setting up special units for environmentally sensitive patients, including those with ME.

She suffered another major relapse after the book was published, and initially reported that she had found her own book to be of great value in managing it. She never recovered, and wrote of her terrible suffering on Greg Crowhurst’s Stonebird website. She remarked that, if you saw her, you would think she was about to die. She was admitted to hospital some time in late 2011, after being on the “urgent list” for some time, and her family turned over the group and promotion of the book to others.

Some articles that Emily wrote or contributed to:

I won’t let M.E. curse ruin my life: how Emily, 18, is fighting back (appears to be from the Daily Mirror)

An interview conducted when Emily was 19

Fatigue Not Worst Symptom of ME from the BBC, quoting Emily as then AYME press officer

“I had three years of nothingness, of hell …” from the Daily Telegraph in 2008, after the death of Lynn Gilderdale (it is Lynn, not Emily, in the accompanying picture)

From 6 to 30: A Life with ME, describing her condition since her last relapse, published last year

Emily’s ME Awareness appeal, published here (among other places) last year

Emily also features in the book Lost Voices, published by Invest in ME, and a picture of her briefly appears in the film Voices from the Shadows. In the credits to this film, there was a message that some of those featured in the film had deteriorated inexorably during its making; her young death clearly highlights the urgency for serious biomedical research into the cause of, and potential cure for, this devastating neurological illness.

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