Merryn Crofts

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26 May 2018

Merryn Crofts was a young woman with very severe myalgic encephalomyelitis (ME) and also had suspected Ehlers-Danlos syndrome[1][2][3] and mast cell activation disorder[1][2] 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. [4]

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[edit | edit source]

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
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.[5]
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.”[6]

Media coverage[edit | edit source]

Learn more[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

  1. 1.01.1 Tillman, Adriane (May 19, 2018). "Inquest Rules Merryn Crofts Died Due to Severe ME - #MEAction". #MEAction. Retrieved Oct 27, 2018. 
  2. 2.02.1 "Young woman from Norden cause of death attributed to Myalgic Encephalomyelitis". www.rochdaleonline.co.uk. May 18, 2018. Retrieved Oct 27, 2018. 
  3. "Ben Nevis Trek - Fundraising for 25% ME Group for The 25% ME Group on MyDonate". MyDonate. Retrieved Oct 27, 2018. 
  4. Bed-bound and in unimaginable pain, watching my daughter waste away and die from ME was torture
  5. 5.05.1 Siddle, John (May 18, 2018). "Young woman bed-bound for three years before dying of disease that some insist is all in the mind". mirror. Retrieved Aug 16, 2018. 
  6. 6.06.1 Tillman, Adriane (May 19, 2018). "Inquest Rules Merryn Crofts Died Due to Severe ME". #MEAction. Retrieved Mar 27, 2019. 

myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.