ME Association blog post by John Siddle, 18 May 2018: Inquest Ruling: Young drama student Merryn Crofts killed by M.E.
A devastating disease that some experts insist is all in the mind led to the death of a young drama student, a landmark inquest today ruled.
Merryn Crofts, 21, weighed less than six stone and had spent the last three years of her life totally bed-bound with severe ME – an incurable condition that affects 250,000 people in the UK.
The youngster was unable to take more than two teaspoons of food before suffering immense gut pain and vomiting, a coroner was told.
Merryn, from Rochdale, today became only the second person in the UK to have M.E. – myalgic encephalomyelitis – listed on a death certificate.
Despite being classed as a real neurological disease, many think the condition is not real – even within the medical profession.
Merryn’s mum, Clare Norton, sobbed as she told Rochdale Coroner’s Court how her “beautiful” and “energetic” daughter was left wheelchair-bound and reliant on tube feeding.
She said: “As a child, she was a bundle of energy. She didn’t walk anywhere – she would hop, skip and jump.
“She was the kind of person that people gravitated towards. They wanted to be her friend.
“She was very social and loved drama. She was a total fashionista, a typical teenager. Her bedroom was a mess of clothes, hairspray and tan.
“But she was also stubborn, and I think that helped her cope with her illness in a lot of ways. She never gave up.”
In August 2011, Merryn, then 15, was diagnosed with hives and swelling shortly after coming back from a family holiday in Mallorca.
Tests in early 2012 revealed that at some point she had contracted glandular fever – a virus which can trigger M.E.
Despite dozens of medical appointments – including mental health checks for panic attacks – Merryn’s condition deteriorated as she suffered breathing problems, exhaustion and excruciating hypersensitivity to touch, light and sound.
She was eventually diagnosed with M.E. in the summer of 2012.
The would-be theatre star, who was forced to wear an eye mask, also suffered from severe migraines, brain fog, slurred speech and persistent infections.
Stomach problems, and problems swallowing, meant that her weight plummeted to just five-and-a-half stone.Coroner Katherine McKenna was told that Merryn could take on just 100 calories a day because her gut was in so much pain, and that, by 2015, even two teaspoons of nutrients were intolerable.
Merryn was eventually fitted with an intravenous nutrition line but suffered intestinal failure and was given a terminal diagnosis in 2016.
She died on May 23, 2017, just days after her 21st birthday.
Mrs McKenna today concluded her cause of death as starvation caused by a withdrawal of supportive nutrition, caused by M.E. She described Merryn as someone who “bore her suffering with dignity and good grace”.
She said: “Merryn had suffered with M.E. since 2012 which caused severe fatigue, gastrointestinal failure, chronic pain, global hypersensitivity, loss of mobility and function.
“Despite extensive investigations no reason for her gastrointestinal failure which led to her reliance on supportive nutrition was found and it most likely it was caused by her M.E.”
Mum Clare, who attended the inquest with daughter Amy Williams and Merryn’s stepdad Dave Norton, told of her long-standing belief that M.E. contributed to her death.
She said: “With M.E. the key symptom is post-exertional malaise. That means if someone’s energy is pushed beyond what they can tolerate, it will trigger all their symptoms.
“The best advice we were given was for Merryn to do just 50% of what she felt capable of.
“But Merryn didn’t even have 50% to give. She was always crashing, so everything that happened to her kept pushing her further behind.”
Pathologist Daniel DuPlessis said that a post-mortem showed low-grade inflammation of nerve roots. It was suggested that this inflammation could have made her bowel hypersensitive to processing nutrients.
Dr DuPlessis pointed out that Merryn had inflammation of the ganglia – gatekeepers to sensations in the brain. A post-mortem into the only other UK death attributed to ME, Sophia Mirza, 32, in 2006, also found ganglionitis.
M.E. expert at Salford Royal hospital, Dr Annice Mukherjee, said she was convinced that the illness was responsible for triggering Merryn’s intestinal failure.
NB While it is possible that only 2 people have been recorded as dying of ME. Other people in the UK have had CFS listed as a cause of death on their death certificates, 1 known in Wales.
The Oakdale Trust
ME/CFS is under recognised and massively underfunded, and through the campaign #StopIgnoringME the goal is for people to do just that, to stop ignoring the 250,000 people suffering from ME in the UK.
On Saturday 12 May, representatives from around the world will gather at Place des Nations in Geneva at 12pm, at the Broken Chair monument.
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