There is no help – final message of woman with ME

Patient organisations and charities say the lack of understanding of the disease is reflected in poor support services across the UK.

Action for ME have also been involved in the DecodeME study.

Chief executive Sonya Chowdhury says services in Scotland are particularly poor, with very limited support available.

“ME, whether it is mild or severe, significantly impacts on your life,” she says.

“It takes away a lot of the things of the things people take for granted.”

Last week an inquest began in Devon into the death of Maeve Boothby who had severe ME.

The 27-year-old died after being discharged from hospital in Exeter in 2021.

Her mother said the NHS had no way to treat the condition.

A recent legal hearing into her death heard there was a gap in NHS services for severely ill ME patients.

Her family hopes that an inquest into her death, may change the way ME sufferers are treated by the medical profession

In one of her final messages, Edina made a plea for others left struggling.

She said: “There are a lot of people like me, they don’t get seen, they don’t get heard because they can’t.

“They are stuck at home, often in their bedroom.

“There is no help but there should be.”