💙❣️ 𝔉𝔯𝔞𝔤𝔪𝔢𝔫𝔱𝔢𝔡 𝔅𝔢𝔩𝔩𝔞 ❣️💙

@meactnetuk
Sean O'Neill writes movingly in The Times about the failure of medicine to treat ME/CFS and also reveals the inbuilt cruelty of the UK's inquest system

'When Sean O’Neill’s daughter Maeve died at 27, he faced years of waiting for an inquest and then the ordeal of reliving her decline due to poor treatment of her severe ME, to find out why the system failed her.

In the early hours of October 3, 2021, my eldest daughter, Maeve Boothby O’Neill, died, aged 27, at the home she shared with her mother in Exeter.

Maeve had suffered since her teens with the poorly understood disease myalgic encephalomyelitis (ME). The illness, which developed after a viral infection, stopped her going to university and piece by piece stole away her hopes, ambitions and independence. In her twenties she became housebound and was for long periods bedbound. In the last seven months of her life she became so unwell she could not chew or digest food.

She was admitted three times to the Royal Devon and Exeter Hospital; she hoped for artificial feeding to keep her alive. She knew such support was offered to some ME patients in the UK and around the world. But there were no NHS pathways and little knowledge about how to treat someone with an illness that many in medicine seem to believe is a physical manifestation of a psychological disorder.
In August, feeling the hospital could not help her, Maeve elected to come home and spend her remaining time with those who loved her.

After her death, her GP referred the case to the Devon coroner. He wrote, “There is no guidance about the management of severe ME. Several doctors involved in her care stated they do not believe ME is a medical problem. I do not feel I can put myalgic encephalomyelitis on her death certificate without raising this case for your personal attention.”'

https://ow.ly/u9bz50TPg8g

#MyalgicEncephalomyelitis #VerySevereME

Image: Left hand photograph of Sean O'Neill, a white man wearing glasses and a white shirt with a young Maeve Boothby O'Neill a white girl with long hair and wearing a red top. Right hand photograph is of Sean O'Neill sitting down wearing a grey t-shirt with The Clash and a dragon on.