Merryn Crofts

26 May 2018

Merryn Crofts was a young woman with very severe myalgic encephalomyelitis (ME) and also had suspected Ehlers-Danlos syndrome and mast cell activation disorder in the later years of her illness. She died on 23rd May 2017, 10 days after her 21st birthday. Her symptoms originally began in August 2011 when she was 15, and by the time of her death in May 2017, she had been completely bed-bound for the previous three years, had hypersensitivities to light, noise, touch, smell and movement, had gastrointestinal hypersensitivities which meant she had to be TPN fed by a Broviac line, was in total pain, among many more symptoms.

An inquest into her death was held on Friday 18th May 2018 at Rochdale Coroner’s Court. The coroner, and multiple medical experts, overwhelmingly agreed that her death was due to starvation due to having to be removed from her Broviac line which was ultimately caused by myalgic encephalomyelitis. A psychiatrist present stated there was categorically no mental health issues with Merryn and that her illness was ME which is clearly very physical. Other medical professionals present also stated that ME should be her cause of death. The coroner stated that all her gastrointestinal issues were a result of a hypersensitive gut which was caused by ME, so ME is ultimately responsible for her death. Merryn is the second person, and the youngest, in the UK after Sophia Mirza to have ME listed as cause of death. Her family hope the case will show how severe ME can be and that it can help sufferers of ME receive better understanding from the medical profession, and for more UK biomedical research to be conducted.

Her story was featured in the BBC Newsbeat documentary, M.E. and Me. Her family also have a Facebook page in her memory where they raise awareness for ME called Merryn's Legacy.

Ganglionitis

Merryn was bedbound and unable to eat. She weighed six stone (84 lbs) at her death; her autopsy revealed ganglia inflammation. It is suspected that in the later years of her illness Merryn also suffered from EDS and MCAD. Her death certificate is the 2nd in the UK to attribute a death to ME

• May 18, 2018, Young woman bed-bound for three years before dying of disease that some insist is all in the mind

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.

• May 19, 2018, Inquest Rules Merryn Crofts Died Due to Severe ME

The Rochdale Coroner’s Court reported 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, reported the ME association.

“[The pathologist] 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.”

Media coverage

• 'Bed-bound and in unimaginable pain, watching my daughter waste away and die from ME was torture'
• 'Heartbroken family tell of how daughter slowly died after battling ME'
• 'Young Girl Dies From Illness Some Experts Refuse To Believe Exists'
• 'Daughter died aged 21 after illness some experts don't believe is real left her bed-bound and wasting away'
• '"ABSOLUTE TORTURE" Heartbroken mum reveals how she watched her daughter waste away in "unimaginable pain" while suffering from ME'
• 'Devastating disease Family of girl killed by ME say doctors told her it was all in her head – before it robbed her of everything'
• 'Mother releases pictures of daughter who died aged 21 weighing just six stone after wasting away from neurological disease ME that some experts still do not think is real'
• 'Mother fights for more awareness of M.E. after daughter's death aged just 21'
• 'Drama student, 21, was killed by ME rules coroner even though some say condition is all in the mind'
• 'Mother fights for more awareness of M.E. after daughter's death aged just 21'
• 'Young woman who spent years battling ME died as a result of the "devastating and cruel" illness, inquest hears'
• 'Young woman from Norden cause of death attributed to Myalgic Encephalomyelitis'
• ME sufferer who was dismissed as hysterical vindicated in death

Learn more

• Facebook: 'Merryn's Magical Fund'

See also

• Causes of death
• List of deaths caused by myalgic encephalomyelitis or chronic fatigue syndrome
• Severe and very severe ME
• Dorsal root ganglia
• Pediatric
• Severe and very severe ME

biomedical research basic medical research on organisms, such as humans or other living things, that helps increase medical knowledge. (Learn more: me-pedia.org)