An inquest into the death of Merryn Crofts, 21, concluded that she died from starvation due to severe Myalgic Encephalomyelitis (ME) – making her the second person in the U.K to have ME listed on a death certificate.
Merryn weighed less than six stone (84 pounds) at the time of her death, and had spent the last three years of her life totally bed-bound with extreme hypersensitivity to touch, light and sound. It was also suspected she had Ehlers-Danlos Syndrome and Mast Cell Activation Disorder. She was only able to take 100 calories per day because of the pain in her stomach, and was eventually fitted with an intravenous nutrition line. Merryn died on May 23, 2017.
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.”
A mental health expert confirmed that Merryn did not suffer from depression or an eating disorder.
In 2011, Merryn had developed hives and swelling after a family trip to Mallorca. Later tests showed that she had contracted glandular fever at some point. She was diagnosed with ME in 2012.
Merryn’s story was featured in the BBC Newsbeat documentary, M.E. and ME. ME affects an estimated 250,000 people in the UK.
After NICE held its roundtable to discuss the new ME/CFS guideline, Forward-ME (which #MEAction UK is a member of) have produced the below statement. Clinician and Patient Support Confirmed for new NICE Guideline on ME/CFS. On Monday, Forward-ME and member charities attended a roundtable to review the new ‘NICE guideline on ME/CFS’ with representatives from