At the time of her death, 21-year-old Merryn Crofts weighed about six stone—or 84 pounds. Merryn was from Norden, and she died on May 23rd of last year, which was only 10 days after her birthday.
Merryn was suffering from a severe case of myalgic encephalomyelitis, or ME. She had spent her last three years bed-bound, and she was living her life in pain.
ME is believed to affect 17 million people worldwide; however, many do not think the condition actually exists. Even many medical professionals do not think the condition is real.
Merryn’s family is now speaking out regarding the condition and Merryn’s death, and they are doing so in the hopes that awareness of the crippling disease will be raised. Her mother Clare has described the “torture” she experienced watching her daughter waste away.
Clare said that Merryn was quite passionate regarding raising awareness as well as understanding of the disease.
Her daughter—Clare says—would not want other families to suffer.
However, according to Clare, Merryn was also very embarrassed by the fact she had ME. When asked, she would simply claim she had a neuro-immune condition. That’s because there is still a stigma attached to myalgic encephalomyelitis. Clare said that the stigma exists even in the medical community, adding that there is also a lot of misinformation out there.
The situation that currently exists, she said, needs to change.
The first indication that something could have been wrong occurred when Merryn was only 15 years old. She developed severe swelling around her feet, hands, and face.
Doctors thought she might have an infection; they prescribed antibiotics for the Oulder Hill High School student. However, her symptoms got worse. She would go on to experience severe fatigue, which is one of the primary signs of myalgic encephalomyelitis.
Clare would have to quit her job as a counselor in order to take care of her daughter full-time. Clare described her daughter—when she was young—as a bundle of energy and also a “daredevil”. However, once she was afflicted with ME, she would arrive home from school and sleep on the sofa for six hours. Clare compared it to watching a “wind-up toy” that ran out of power. She said it just kept happening more and more.
Merryn would undergo multiple mental health assessments as her symptoms got worse. Doctors thought that her condition could be psychological, which is a pretty common misdiagnosis in cases of ME.
The possibility that she had conversion disorder, which was once known as hysteria, was brought up.
It was because of Clare’s own research that she suspected her daughter had ME—a possibility that she said scared her to death.
Clare brought up her suspicions to medical professionals, but they were skeptical. One doctor allegedly told her that they might diagnose Merryn with ME once everything else was eliminated as a possibility. Another doctor told Clare they didn’t believe in ME, and that was that.
Sadly, Clare’s experience is not an uncommon one. The condition has always been controversial and debated.
The condition is often referred to as “yuppie flu”. One of its several symptoms is extreme, lingering fatigue after exercising. The cause of the disease is unknown; however, it tends to develop after patients suffer from a viral infection. Also, women are four times more likely to develop ME than men are.
Merryn had experienced a case of glandular fever prior to developing the symptoms of ME.
Clare and Merryn were frustrated with the NHS, so they saw a specialist, and that specialist diagnosed her with severe myalgic encephalomyelitis. Later, a myalgic encephalomyelitis consultant for NHS would end up agreeing that she had the condition.
Clare said that it was a battle. ME is recognized by the World Health Organization as a neurological disease—and it has been for decades—but doctors were still telling them that they didn’t believe in it. Clare described the experience as similar to banging one’s head on a brick wall.
Merryn would end up wheelchair-bound; she couldn’t climb the stairs at the family home. In addition to her mother, she shared that home with her sister Amy and step-father Dave Norton.
In August 2015, Merryn wrote a blog post about ME. She described living with it, saying it is like being trapped in one’s own body every day. There is no rest, she wrote, and the sufferer is bed-bound every day.
In that post, she wrote that it snatches even simple things away from you, like being able to wash yourself. You have to be cared for in every way possible, and there’s pain from everything. There are months in the hospital, severe infections, low immunity, paralysis, and breathing problems.
Clare said that Merryn was a “huggy” girl; however, towards the end, she found it agonizing to be touched. She also said that going into the hospital was torture for Merryn. She would always leave the hospital worse than when she went in.
The ME would eventually impact Merryn’s muscles in her throat; that’s why she had trouble eating. According to Clare, whatever food she could digest would often be vomited up. Therefore, her weight ended up plummeting. She ended up having to be tube fed. She was also on massive doses of painkillers.
In the spring of 2017, Merryn ended up being diagnosed with an infection, so she had to stop using her feeding tube.
Merryn refused to go back into the hospital to receive a large dose of antibiotics; there was no guarantee they would work, after all. Merryn knew the consequences of her decision. She lasted three months. Her mother described those months as “absolute torture”.
When she died, Merryn called Clare into her room, and said that she had to be “getting off now” to her mother.
Merryn had asked Clare to call the district nurse. Clare was waiting downstairs for the nurse when Merryn died.
Merryn wrote letters for her family, to be opened after her death. Doing so took over a year, as even typing was painful for Merryn.
Merryn was also a shopper; she enjoyed ordering clothes online, even though she couldn’t actually wear them. They would be left in the original packaging, labels still attached. After her death, her family held a sale, and the funds raised were donated to the Grenfell Tower Appeal Fund.
Merryn is actually the second person in the United Kingdom to have ME listed as the official cause of death—the first “official” death from the disease occurred in 2005.
Clare says that it is essential that Merryn’s death is not overlooked. There needs to be research done on the condition, as consequences of the condition can and do lead to an early death.
More information about ME can be found at www.meassociation.org.uk.