Family who watched their daughter slowly die will feature in upcoming documentary about devastating disease

Date published: 19 April 2018

A heartbroken family who told of how they watched their daughter die after battling a devastating disease will be featured in an upcoming documentary about the disorder.

Merryn Crofts from Norden was just 21-years-old when she died after a six-year battle against Myalgic Encephalomyelitis (ME), a neurological illness that causes immense and insufferable pain that affects approximately 250,000 people in the UK.

Now Merryn’s family – mum Clare Norton, sister Amy Williams and step-dad Dave Norton –  are speaking out to raise awareness of the debilitating disease and change the future for other sufferers.

Clare said: “It was a very emotional day, but we hope we did Merryn and the ME community proud.”

The documentary, which focuses on severe ME, is planned to air during ME Awareness Week on 8 May.

It will be broadcast on BBC iPlayer on the Radio 1 channel, and is expected to feature interviews with families like Merryn’s, plus the Scottish MP Carol Monaghan. Filming is also understood to have taken place at the Biobank, which is conducting research into severe ME.

The ME Association lists the seven key symptoms of the disorder as post-exertional malaise or symptom exacerbation, activity-induced muscle fatigue, cognitive dysfunction, pain, sleep disturbance, ongoing ‘flu-like’ malaise, and autonomic symptoms. Of those affected in the UK, 25% are severely affected by the illness and 2% very severely affected. It affects four times as many women as men and a cause has not yet been identified.

When Merryn was 15, her face, hands and feet suddenly became severely swollen with what was originally thought to be an infection. 

Her mum, Clare, recalled: “She had these strange feelings, she was so white, she had heavy legs and problems breathing.”

In addition to excruciating hypersensitivity to touch, light and sound, the Oulder Hill pupil also suffered from severe migraines, brain fog, slurred speech, agonising stomach problems, and problems swallowing.

Her weight plummeted to just five-and-a-half stone (35kg) and she was also given a feeding tube before being fitted with an intravenous nutrition line.  She later developed an infection in spring 2017 which meant she had to stop using the tube.

Clare commented: “Each time Merryn came out of hospital, she was worse. The last time she said she was never going back in.”

By the end of her first year of falling ill, Merryn was no longer able to walk. After a recommendation, the family went to see a specialist at a private clinic, who diagnosed Merryn with ME. An NHS ME consultant in Wigan also agreed Merryn was suffering from the condition.

She even underwent mental health assessments, which showed her illness was physical. Despite a long battle, Merryn died just ten days after her 21st birthday in 2017. An inquest into her death will take place next month.

Merryn’s family have also set up a page in her memory, aptly named ‘Merryn’s Legacy’ (stylised as MErryn) and will be taking part in ‘Millions Missing’ on 12 May, a movement during ME awareness week (7 – 13 May) demanding change for sufferers. The day aims to bring sufferers together by laying out a pair of empty shoes, representing the life missed due to the illness.

Amy added: “We will be taking Merryn’s shoes to show her presence.”

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