The mother of Merryn Crofts believes attitudes about the disease haven't changed since her daughter's death two years ago
- Merryn was bed-bound for the last three years of her life
- Then she suffered problems with her stomach and ability to swallow
- Her neurologist told her mother ‘ME is not a real disease'
- Only second person in the UK to have ME listed on a death certificate
Clare Norton struggles to talk about the day her “beautiful” and “energetic” daughter took her last breaths just days after her 21st birthday.
As a mother, she’d felt helpless as she watched Merryn’s agonising six-year fight with severe myalgic encephalomyelitis, known as ME.
The disease had left her bed-bound for the last three years and forced to lie permanently in the dark in her bedroom with ear plugs in – hyper-sensitivity to noise, sound and touch caused her agony.
Problems swallowing and with her stomach meant that her weight plummeted to just five-and-a-half stone, and she needed to be tube fed.
Last year, Merryn, became only the second person in the UK to have ME – also known as chronic fatigue syndrome – listed on a death certificate.
For years the illness was dismissed as psychological – not helped that there is no formal diagnosis, cause or cure established – but it is now recognised as a biological illness.
However, as the two-year anniversary of Merryn’s passing on 23 May approaches, Clare is speaking out because she says many – even in the medical profession – still believe ME is ‘all in the mind’.
|“A neurologist even said “ME is not a real disease.” The medics made her doubt herself and feel ashamed.”
Dismissed as ‘panic attacks’
Merryn was 15 when she developed a sore throat and a cough that wouldn’t shift. She later tested positive for glandular fever, a known trigger for ME.
She was exhausted, struggling to walk and suffering breathing problems. A few months later she collapsed and was taken to hospital.
From then she deteriorated further with severe migraines, brain fog, slurred speech and persistent infections. She would need a wheelchair.
Merryn tried to struggle on and go to school on a reduced timetable.
“She was that sort of person,” said Clare, 50, from Rochdale, Greater Manchester. “A live-wire, a people person, she loved drama. Her school was very supportive.”
|“But, eight months after she first became ill, the school rang because she couldn’t move her legs or stand up. She was totally paralysed from the waist down. She couldn’t go anymore after that.”
The theatre lover tried to study performing arts at college but only lasted two weeks.
The family faced a frustrating battle to get answers from medics. “Merryn was told she was suffering from panic attacks and was offered diazepam. One doctor told her it was all in her head.”
“We ended up going to a private doctor who had been recommended to us who diagnosed her with ME about a year after her symptoms began. Then he suggested an NHS doctor who we could go to.”
Diagnosis not accepted
Merryn’s excruciating hypersensitivities became so extreme her mother was unable to hug her.
“Normal noise became so painful to her. Her bedroom was downstairs and the sound of the kettle would hurt her.
“She could feel the vibrations if a neighbour was mowing the lawn and it was unbearable.”
“I couldn’t touch her in the end, I’d just lie on her bed but even the slight movement of me doing that became too much for her.”
Even when Merryn had her official diagnosis, there were medics who didn’t accept it, including when she spent nine months in hospital with severe stomach problems.
“When her weight dropped the hospital staff said she was anorexic. They wouldn’t accept she had ME, even though it was official.”
“We had to really push for a swallowing expert to take a look at her and they confirmed that she had physical problems swallowing.”
|“We saw one neurologist who said ‘ME doesn’t exist’. I said it’s recognised by the World Health Organisation and NICE (National Institute for Health and Care Excellence) and he said “I don’t have to follow NICE guidelines.”
Merryn’s condition deteriorated and she was diagnosed with intestinal failure and given a terminal diagnosis in 2016.
She was fitted with a feeding tube, but her delicate stomach couldn’t cope with it. Eventually she had an intravenous nutrition line, but that became infected and she opted not to have an operation to insert a new one.
“It got to the point where she said no more hospital stays. She knew she was dying and she wanted to be at home.”
The coroner for Merryn’s case was told she could take just 100 calories a day because her gut was in so much pain. It was concluded that her cause of death as starvation caused by a withdrawal of supportive nutrition, caused by ME.
ME expert Dr Annice Mukherjee, from Salford Royal Hospital, said: “I haven’t come across a case of ME with life-threatening malnutrition before, but I have come across many patients with severe ME that are bedbound that have global sensitivity issues and severe gut issues. But every single patient with ME is different, so I never see the same case twice.”
|“It got to the point where she said no more hospital stays. She knew she was dying and she wanted to be at home.”
‘ME can be fatal’
Last week i reported on the story of teenager Georgia Whyard who was housebound by ME yet had been threatened with fines by her school for being truancy.
“I know one mother of someone with ME who is being accused of fabricating the illness and the daughter is being threatened with being sectioned,” said Clare. “I worry attitudes haven’t changed one bit since my daughter’s death.
“It needs to be recognised how serious ME is – and that it can be fatal. I suspect there are many more deaths from ME but they haven’t been recorded as such.”
The ME Association is calling for better awareness for the illness which affects a quarter of a million people in the UK.
|“Despite the number of people affected, and the devastating effect this disease has on patients and their families, it is still very much a hidden illness.”
“Laughed off as ‘yuppie flu’, and misunderstood by doctors and politicians alike, ME receives little funding, and treatment is often damaging. We cannot allow that to remain the case any longer.”
John Siddle, PR Manager, ME Association.
Signs of ME found in patients – and a diagnostic blood test is in the pipeline
Frustration, anxiety, low mood and depression are sometimes experienced by people with ME because of the impact of symptoms on their lives.
A parliamentary debate last year was told how sufferers are more than six times likely to commit suicide. But as NHS Inform points out: “This does not mean that ME-CFS is a mental health condition.”
Indeed, in 2017 US researchers from discovered molecular changes in the brain of people with CFS. Another study found sufferers showed a higher levels of a protein linked to inflammation in their blood, suggesting the condition is triggered by overactive immune system.
Now experts say the first blood test capable of diagnosing the illness could be in sight. US researchers, led by Stanford University, have found a way to measure differences in the electrical signals given off by cells in the immune systems of people with ME.
The ME Association
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