IMAGE DESCRIPTION: An image of flowers next to a candle. Title: BBC News: Scotland: There is no help – final message of woman with ME. The ME Association Logo (bottom right).

Scotland: There is no help – final message of woman with ME

By Lisa Summers, BBC Scotland Health Correspondent

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.

Warning: Some people might find this article upsetting.

Article extracts

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…

Before she was ill, Edina was a keen hillwalker, cyclist and swimmer.

“This disease has taken everything from me.

“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 Slayter-Engelsman

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.

Scotland

In Scotland, assisted suicide and euthanasia are currently illegal but a bill has been proposed to allow terminally ill people to end their lives in certain circumstances.

The bill proposed from Lib Dem MSP Liam McArthur is very different to the Dutch law and would be limited to adults who are dying of a terminal illness – not those suffering from a severe long-term condition.

It would not be available to someone like Edina whose condition is not a terminal illness. The bill will be debated in the Scottish Parliament soon…

A Scottish government spokesman said that severe ME/Chronic Fatigue Syndrome (CFS) can be debilitating and people should have access to the care and support they need to manage their condition.

“The latest NICE guidance includes clear and specific recommendations regarding the care of people with severe ME/CFS,” he said.

“Service provision is the responsibility of NHS boards and we expect all boards to provide care that is person-centred, effective and safe.

“We are currently updating health board data on ME/CFS care in Scotland with the aim of identifying areas where there is potential to progress service development.”

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