Mum wins minister's backing for campaign to prevent chronic fatigue syndrome deaths - following daughter's death

A Rochdale mother’s campaign to prevent deaths from chronic fatigue syndrome has received a major boost after a Government minister announced a review of NHS services for people suffering from the condition.

Rochdale MP Paul Waugh received the update from Health minister Andrew Gwynne after lobbying on behalf of Clare Norton, whose daughter Merryn died of myalgic encephalomyelitis (ME) in 2017.
 

Read more: Gifts to make severe ME sufferers smile posted in Merryn Crofts' memory by Smile for ME charityPublished: 13 May 2021

In a letter to Mr Waugh, the minister announced that a long-delayed public consultation on the disease would be published this month [December], and a final NHS-wide “delivery plan” produced in March 2025.

The plan, long demanded by families affected by ME but delayed since 2023 under the previous government, will focus on more research and training of doctors to better help the 250,000 people in the UK who suffer from ME, or chronic fatigue syndrome.

ME is a debilitating illness that causes flu-like symptoms, severe fatigue, sleep difficulties, brain fog, and chronic pain.

Sensitivities to light, sound, and other stimuli can make daily life overwhelming for many sufferers - and in severe cases it can lead to death due to malnutrition.

Merryn Crofts became the second person in the UK to have myalgic encephalomyelitis (ME) listed on their death certificate. She was just 21 years old when she died.

Read more: Young woman from Norden cause of death attributed to Myalgic EncephalomyelitisPublished: 18 May 2018

In his letter, Mr Gwynne said: “The Government is aware of the devastating effect ME/CFS [chronic fatigue syndrome] can have on those suffering from the condition and recognises that it is an under-researched area.

“The plan will focus on improving research, attitudes, and education, and bettering the lives of people with this disease.”

Rochdale MP Paul Waugh, who met Clare in his constituency surgery, said: “After speaking with Merryn’s mother, Clare and hearing their family’s story, it is clear that this plan is desperately needed.

 

 

"We must improve the quality of care received by people with ME/CFS and invest in research and education to better understand its causes.

"This is a vital step forward for thousands of families.”