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.
On this page (jump to section):
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.”
Emily’s story is told in more detail in my Telegraph article and on her book’s website.
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.
Alley Briar Daley
Died 11th February 2022, aged 27
Alley was non-binary and used the pronouns they/them.
Alley was a warm, friendly and caring person. We were friends on social media for many years, and I was always struck by their incredible strength in the face of adversity. Alley was seriously ill with a number of conditions (one of which was ME) and was regularly rushed to hospital with life-threatening complications. Yet despite so many setbacks, Alley faced life with resilience, and with a determination to make the very best of what they had.
Alley had a strong Christian faith, a love of animals (particularly their own treasured pets) and a warm and giving heart. When I suffered a close bereavement, Alley – who had been through a similar loss – got in touch and offered to listen any time I needed to talk. From the accounts of others, this was typical of their caring nature.
Alley’s bright smile lit up many lives. They had recently become engaged and were looking forward to the future. Although Alley had nearly died on numerous occasions, their sudden passing was a shock to all who loved them.
(NB. Alley’s ME was not the direct cause of their death, but played a significant part in their overall ill health.)
Died 25th December 2022, aged 38
I knew Anna for several years through social media. When she became too ill to maintain a presence there, we stayed in touch through Christmas cards. I didn’t know her well but was always struck by her bright smile and resilient spirit.
Anna was completely bedridden for many years. She was unable to sit up or use her arms, which were permanently locked in spasm. But she created the best life that she could in painfully restricted circumstances, including holding an Hawaiian themed party from her bed for her 30th birthday. She was a treasured friend to many people.
Following a deterioration in her health she was admitted to hospital, and died on Christmas day with her family surrounding her.
Died 2nd January 2023, aged 32
Kara was a young woman whose body was broken but whose spirit soared high. Despite enduring extreme levels of suffering, she remained strong and determined until the very end. As a friend she was warm and loyal, with an infinite capacity for caring for others.
Kara and I met through Facebook in 2015. By that time she was already so ill that doctors did not expect her to live long. She’d had ME since childhood, but for many years her symptoms had been more moderate, and she’d managed to attend university in a wheelchair. She was passionate about the performing arts, and spent her spare time helping the homeless and teaching disaffected young people. Her instinct in life was always to make a difference to the world.
But when her fellow students moved on to start careers and families, Kara’s world shrank as her health deteriorated. She became completely bedridden, her pain so severe that even morphine couldn’t relieve it. She required oxygen and a catheter, and needed nursing care day and night. Her immune dysfunction was so profound that she suffered almost constant serious infections, which frequently progressed to sepsis. In her final years she was in hospital more than she was at home. Kara survived against the odds many times, but her suffering became increasingly intolerable, and she questioned why God – in whom she had a strong faith – hadn’t let her slip away into peace.
It’s important to speak of Kara’s suffering because it shaped so much of her life. Loss ran through everything: she lost her career, her adored partner, her independence and her freedom. Eventually she lost the ability even to wash and dress herself; to leave her bed; to eat normally. In her final months she largely lost the ability to communicate, too. No longer able to hold her phone, she had to relay messages through a carer – a slow and painful process that eroded the last of her privacy.
But even though Kara’s suffering shaped her life, it never once defined her as a person. As I wrote in a tribute published on her website: “To know her was to know a unique human being, whose spirit never wavered despite the most tremendous suffering.”
To the very last she was caring and full of warmth. At Christmas, just a week before she died, she was keen to know whether I had been able to spend time with my family. She was never bitter and rarely complained about the agony she was in. Just weeks before her death she downplayed her latest infections and a pressure sore as “minor inconveniences”. When – suspecting the end was near – I told her how remarkable she was, she seemed surprised. She never realised how courageous, how unbelievably resilient, she really was.
My closest involvement with Kara, and the source of my most special memories of her, came with the creation and release of her album It’s Still M.E. Knowing that recording an album was her final wish – and having heard demo recordings of her beautiful songs – I wrote an appeal here on A Life Hidden, asking for musicians to help produce the album. When BBC News picked up the story she was inundated with offers of assistance, and over the following months her album was produced by an amazing team of who gave their time and talent for free.
For several weeks in the summer of 2020, Kara and I – along with her producer Liam – worked hard promoting the album. Kara’s dream was to raise £100,000 to fund a centre for post mortem research into ME, and she never wavered in her enthusiasm for the project. Between her gruelling hospital admissions we held video calls to discuss the album’s release, and Kara was always full of ideas. She knew exactly what she wanted and had a very persuasive way of making sure it got done! The joy we shared in seeing her album reach the top of the Amazon and iTunes charts, and then reach number 8 in the official download chart, is a memory I cherish. But the chart success mattered far less to her than raising awareness of severe ME and funding quality research. Her greatest wish was that others would never have to suffer as she had – both in terms of the illness itself and also the medical attitudes that had caused her such harm.
As she wrote in a blog post in 2019:
“I’ve had a doctor, who sadly I’ve seen more than once, openly admit that she doesn’t believe in ME – so God only knows what she thinks I’m there for when I cross the threshold into the hospital yet again. This is not ok. It’s not ok for someone to be able to decide whether they believe in my disease or not, and letting this influence their treatment decisions about my case.”
In her final months, Kara was receiving end of life care at home from a hospice. And yet the focus of her messages to me (when she was able to send them) was the work she was doing on her second album, or small things that she’d been able to enjoy. “I’ve treated myself to some of the softest pjs in the land – it’s like putting on a cloud!” she wrote one day. She died of sepsis, but ME was recorded as the underlying cause of her death – something she would have viewed as the ultimate validation of her suffering.
In one of my final messages to Kara I wrote the following words, which summarise everything I could wish to say about her:
“I honestly don’t know how you’ve endured all that you have, but your greatest achievement has to be holding onto your Kara-ness. Despite the unimaginable suffering, you are still boldly, wonderfully you. A you that has touched my life and always will do.”
3 thoughts on “In Memoriam”
These are very moving stories and you have given them justice by descibing them so well. I felt so incredibly sad to read them, but you have brought out the reality of very severe ME that remains a subject quite closed in the ME community and the general public. Thank you. x
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Please include Anne’s story. It is very moving. https://www.healthrising.org/blog/2018/01/10/farewelll-last-post-anne-ortegren/
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It is indeed.
I have limited this page to people I knew personally, but I’m glad you’ve included the link to Anne’s story.
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