13/05/2026
Have you heard the story of Merryn Croft?
Remembering Merryn today on what would have been her 30th birthday, May 13th.
Merryn’s legacy lives on as we reflect on her story and the seriousness of Severe Myalgic Encephalomyelitis (ME).
We committed some time ago to keeping Merryn Crofts’ story in the spotlight in the hope that her untimely death is never overlooked; that the urgent need for proper recognition of ME, compassionate care, and biomedical research is addressed; and that ME is no longer trivialised.
Merryn, pictured, died in 2017 from Severe ME and related complications, just ten days after her 21st birthday.
Please note that the following may be a difficult read.
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Merryn's Story
In a landmark inquest in May 2018, Merryn became the second person in the UK to have Myalgic Encephalomyelitis (ME) listed on a death certificate.
In early 2012, tests revealed that at some point Merryn had contracted glandular fever, a virus known to trigger ME in some people.
Despite dozens of medical appointments, Merryn’s condition deteriorated as she suffered breathing problems, profound exhaustion, and excruciating hypersensitivity to touch, light, and sound. She was forced to wear an eye mask and suffered severe migraines, brain fog, slurred speech, and persistent infections.
Doctors initially suggested that Merryn was having panic attacks, and her family were later told she may have conversion disorder, a psychiatric condition formerly known as hysteria. Her family knew this was not the case. Merryn herself began to question whether it was “all in her head” because of the dismissive attitudes she encountered within the medical system.
In a radio interview, Merryn's mum Clare described her daughter as a “live wire” growing up, with a packed social life and a love of drama, but said she “lost her bounce” when she started to develop symptoms of ME at the age of 15.
Merryn was eventually diagnosed with ME in the summer of 2012 by a private doctor and began receiving treatment.
Within six months of falling ill, Merryn was using a wheelchair, and within a year she was housebound.
Around 25% of people with ME are believed to suffer from Severe, Very Severe, or Profound ME. Many are permanently confined to bed, living with relentless pain, severe hypersensitivity to light and noise that forces them to remain in darkened rooms, skin so painful that even the lightest touch can hurt, malnutrition issues, cognitive impairment, swollen limbs, and many other devastating challenges.
These were just some of the awful symptoms that Merryn endured. Severe stomach problems and difficulties swallowing caused Merryn’s weight to plummet to just five-and-a-half stone. At one stage she could tolerate only around 100 calories a day because her digestive system was in so much pain, and by 2015 even two teaspoons of nutrients had become intolerable. She was eventually fitted with an intravenous nutrition line but later suffered intestinal failure.
The pathologist said that a post-mortem examination showed low-grade inflammation affecting nerve roots and the dorsal ganglia - gatekeepers to sensations in the brain.
It was suggested this inflammation could have made Merryn’s nervous system abnormally sensitive, including potentially contributing to gut hypersensitivity and intolerance to nutrition.
Similar findings had been reported in another ME-related death of Sophia Mirza in 2006, also referenced during her inquest.
To address misinformation surrounding Merryn's illness, her family shared some of the severe symptoms she experienced over several years while living with Severe ME, stressing that it would be impossible to fully convey the complexity and severity of what Merryn endured.
Intestinal failure and a hypersensitive gut requiring intravenous feeding
Severe weight loss
Severe stomach pain
Nerve pain (neuropathic pain)
Body pain including constant burning, itching, crawling, and throbbing sensations
Unpredictable muscle spasms affecting limbs, head, and body
Post-Exertional Malaise
Profound exhaustion
Painful swelling of hands, feet, and face
Severe cough
Head pain
Severe Migraines
Ear pain
Tinnitus
Dizziness
Eye pain
Visual disturbances
Blackouts
Loss of proprioception [a reduced or absent ability to sense the position, movement, or orientation of your body parts without looking at them]
Loss of mobility, eventually becoming wheel-chair bound and then completely confined to bed
Loss of function
Persistent infections
Severe cognitive dysfunction affecting speech, memory, word recall, interpretation, concentration, and processing
Slurred speech
Muscle dysfunction and weakness
Nausea and vomiting
Periodic paralysis
Swallowing difficulties
Numbness and pins and needles
Loss of temperature control and temperature sensitivity, overheating, and shivering
Extreme hypersensitivity to light, touch, sound, smell and movement
Hypoglycaemia
Intolerance to heat and cold
POTS
Sleep disturbance
Urinary and bowel problems requiring catheterisation
Breathing problems and air hunger
Recurrent infections
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Merryn's sister Amy described the final three years of Merryn's life as horrendous, saying that Merryn's hospice doctor likened it to “having a heart attack in your stomach.”
Amy added that one of the best pieces of advice the family received was from a doctor who told Merryn to do only 50% of what she felt able to do, so that she would always have some energy in reserve. Tragically, in her final years Merryn had no reserve left; she was constantly borrowing from the following day.
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“Having Severe M.E is like being trapped in your own body every single day. There is no rest, you are bedbound all day every day. It snatches the most simple things away from you like being able to wash yourself, even in bed. Being cared for in every way possible. In terrible pain, from everything. Not being able to talk on the phone or have visitors and feeling worse about saying no every time someone asks again.
Months and months in hospital. Severe infections. Breathing problems. Low immunity. Problems anywhere and everywhere in the body. Paralysis. Severe hypersensitivity. The list is endless, and if I was physically able to type I would carry on. Spread awareness and remember all of us and all of those who have lost their lives.” - Merryn, aged 18
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ME is truly devastating for people with Severe ME. Many are among the sickest patients in society, yet continue to face misunderstanding, inadequate healthcare, isolation, and a lack of urgently needed biomedical research.
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We remember Merryn today, and also honour all those who have lost their lives to this devastating disease, those living in unimaginable suffering, and the families who care for and fight for them every day.
Thinking of Merryn's mum and family today.
