Rather than attempt an extensive record of lives lost to ME, I have limited this page to those who were known to me personally. A more comprehensive list of people who have died from ME can be found here. Please also see my footnote on this page for more on why so few deaths have been officially attributed to the illness
Died 18th March 2012, aged 30
Emily was a fiercely determined, vibrant young woman. She was strong-willed and spirited, loyal and caring. She was passionate about raising awareness of ME through the media, and dedicated to improving the lives of all those affected by the illness. In the late 1990s she worked as PR officer for AYME, a charity for young people with ME (no longer in existence). From her bed she wrote press releases and campaigned for greater understanding of an illness that first struck her when she was six. During a spell of improved health, though still mostly bedridden, she wrote a detailed, highly regarded guide to living with severe ME. (Severe ME/CFS: A Guide to Living can be bought here.) The cost to her health was considerable, but her first concern was helping others survive the terrifying symptoms she herself had known.
Emily had many plans for her book and for further projects she wished to undertake. But she was to deteriorate again, and her latter years were overwhelmed by severe illness. It was during this time, having known one another for many years through AYME, that we became close friends. Although our communication was limited to text messages, which Emily painstakingly typed out on her Blackberry, we developed a close bond. I witnessed first hand both her extreme suffering and her indomitable spirit. In her final years, Emily was completely bedridden, in agonising pain that morphine couldn’t touch, paralysed, tube fed and doubly incontinent. She was diagnosed with immunodeficiency and had severe gastric problems that meant she vomited continuously for days at a time. Her sensory sensitivities were so acute that she was forced to live in complete darkness and silence. But her drive and determination never left her. Shortly before she died she wrote to me: “I have so many plans, so many things which I need to do that I have to find a way to keep going.”
Emily died in hospital when she suffered a respiratory arrest after a traumatic admission lasting three months. Although there were doctors and nurses who treated her with great compassion, others were rude and dismissive until the end. The severity of her illness should have been evident to everyone, but some staff were unable to believe that she could possibly be so ill – until she died. There is no doubt that the way Emily was treated in hospital played a significant part in her fatal decline. With more appropriate, understanding care, the outcome could have been very different.
Emily is a large part of the reason why this website exists. After her death I was determined to honour her in the way that she, as someone committed to raising awareness, would have wanted. The result was my first article in the mainstream media.
On the sixth anniversary of Emily’s death I wrote the following words, which are a perfect summary of my feelings: “Today, and indeed every day, we remember her wonderful, irreplaceable spirit; and also the neglect, injustice and abuse that allowed her to die needlessly.”
Died 23rd May 2017, aged 21
Before she became ill, Merryn was a lively, energetic girl. I met her through the online ME community a couple of years before she died. Her illness was already very severe and I sadly never had the privilege of knowing her well. Even in our limited contact, however, it was clear what a special young woman she was. There was a spark and optimism about her that belied her terrible suffering.
Merryn fell ill as a teenager and deteriorated steadily. For years she was totally bedridden and suffered relentless, excruciating pain. Acutely sensitive to all stimulation, she could barely tolerate any human contact. She suffered complete intestinal failure, meaning that she had to be fed through a line into her heart, and was regularly admitted to hospital with serious infections and other complications. The experience of being in hospital was always so traumatic that, as her infections became increasingly unresponsive to treatment, Merryn made the difficult decision to endure no further admissions. Her condition was now so severe that she was given a terminal diagnosis. The hospice team who treated her at home said that they had never witnessed such suffering, or such courage in the face of it.
During her final months, Merryn used what little strength remained to her to enjoy some special moments with her family. Christmas was brought forward and celebrated in March, with the house covered in decorations that Merryn herself was too ill to see. Clothes from her favourite designer, Ted Baker, were brought to her bedroom for her to look at. She was never able to wear the dresses she bought, but asked that they be sold after her death to raise money for charity. Merryn posted about these events on social media, her enthusiasm for life still apparent even as she neared the end.
It was impossible not to be moved by Merryn’s spirit and shocked by her death. At her inquest the following year she became only the second person in the UK, after Sophia Mirza, to have ME registered as the official cause of death. Her family have spoken movingly about Merryn in the media on numerous occasions. Her story is told in more detail in this news article.