Edina Slayter-Engelsman lived in Scotland for more than 30 years, but last month the Dutch national returned to the country of her birth to end what she describes as the “unbearable suffering” she had experienced living with severe ME.
The 57-year-old went back to The Netherlands - where euthanasia and assisted suicide are legal for citizens under strict controls - to end her life in what she described as an "off-ramp" from her suffering.
Before Edina died, her family approached BBC Scotland News to share her experience, in the hope of raising awareness of the lack of research and support for people with Myalgic encephalomyelitis (ME) in Scotland.
The condition, also known as Chronic Fatigue Syndrome (ME/CFS), is believed to affect at least 250,000 people in the UK, with the symptoms varying from mild to severe like Edina's.
There is no known cause or cure for the condition, with treatment only available for specific symptoms.
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Edina was diagnosed in February 2020 and within a few weeks was bedbound
Individual symptoms of ME vary widely but extreme tiredness is a common factor.
NHS guidelines identify four levels of severity from mild, where patients can carry out some domestic tasks, to severe, where patients are unable to get out of bed and can need help feeding.
Research has suggested that one in four people with the condition report they have its most severe symptoms.
In video messages recorded before her death, Edina- who formerly lived in Aberdeenshire - described the most extreme symptoms which left her unable to leave her bed even to shower or use the bathroom.
She was diagnosed with the condition in February 2020 and within a few weeks, she was bedbound.
Four years later, in the videos from her new home in Almere, near Amsterdam, she described it as like being stuck inside a spider’s web.
She said: “Every time you try to get out, the web just gets tighter and tighter around you."
Edina said the condition had taken everything from her
Before she was ill, Edina was a keen hillwalker, cyclist and swimmer.
"This disease has taken everything from me, she said.
"I feel trapped physically, cognitively and emotionally.
“I exist but I don’t live and this condition has become unbearable to me and has been for a long time now, to the point where I want to end my life.”
She said: “I am isolated from the world outside but also from my own family and friends.
"I am very sensitive to sound, noise, any kind of stimulation, so I can’t really have any kind of get together.
"I have not been able to read books, or watch telly - everything is too much.”
Edina before she was diagnosed with ME
In 2023 Edina returned to the Netherlands to begin a year of psychological and psychiatric assessments, as well as an assessment by Amsterdam's institute of chronic fatigue.
They concluded there were no other treatment options for her.
So Edina got her wish to end her suffering.
With her husband, two sons and close family beside her - doctors administered a lethal injection which ended her life.
From BBC