By Luke Traynor, Liverpool Echo, 15 April, 2018.
Rosie Halsall has coped with the condition since the age of nine
A 17-year-old girl has become virtually housebound because of ME, which at its worst leaves her unable to lift her head from the pillow.
Rosie Halsall has suffered from the illness since she was nine, and last properly attended school in Maghull in 2014.
The teenager now has a bedroom on the ground floor of her parents’ home because she is often too weak to make it upstairs.
Also known as Chronic Fatigue Syndrome, the condition leaves Rosie in a wheelchair and unable to walk or stand unaided.
In 2016, she spent six months in hospital as the illness ravaged her body.
She told the ECHO: “At my worst, I was completely bedbound, unable to lift my head from a pillow, spoon-fed, unable to sit at any further than 30 degress without fainting.
“I was admitted to hospital for approximately six months.
“Whilst I am slowly recovering from this relapse, and able to sit unsupported for minutes at a time and can leave my house on occasions, I still don’t have the strength to stand or walk and I haven’t attended school since 2014.
“I have a very good support system around me who understand my illness, however I have lost contact with people I used to talk to every day and friends who I grew up with.”
ME has really impacted on Rosie’s life since she was 13, and she remains sensitive to lights and sounds, meaning she regularly wears sound reduction headphones and sunglasses.
She added: “People don’t tend to see the bad days, the days when I’m crying in pain, when I’m too exhausted to wear ‘proper’ clothes, and the help I need from my parents with transferring, washing etc.”
Rosie first suffered ME symptoms at the age of nine when she contracted a viral infection, but failed to recover from it.
She now needs her parents’ help to move from chair to chair and can get brain fog and dizziness at any time of the day.
Currently, Rosie is studying for her GCSEs and is home tutored so she doesn’t have to attend school.
She added: “I don’t spend most of the day in bed any more. But I can’t remember the last time I went out for fun.
“My days are a lot of symptom management, with pain relief and I do a lot of stretching.
“ME brings me extreme tiredness, muscle weakness, dizziness and a fast heart rate.
“At home, we have two living rooms, one for the family, and my bedroom.
“ME can be incredibly frustrating as it is difficult to get used to and is very isolating as you don’t go out.
“But I’ve not been diagnosed with any mental health illnesses.
“I think people generally just think I’m just tired or you are just making it all up.
“There’s a real lack of understanding about ME.
“Now sitting my GCSEs, there’s been lots of thoughts of what I could have done if I didn’t suffer from ME.
“I could be in college now with my friends doing my A Levels.”
Around 250,000 people in the UK have the condition.
One in four are so severely affected that they are rendered housebound or bedbound – with some even reliant on tube feeding. There is no known cure.
The ME Association
MEA honorary medical adviser Charles Shepherd said: “There are many people, even within the medical profession, who continue to think ME is all in the mind. It’s about time we put this myth to bed once and for all.
“It is essential that youngsters like Rosie are not overlooked and the urgent need for proper recognition of, and research into, ME is recognised.
“Many doctors still don’t know how to diagnose and manage ME, and lack or research means that we still don’t have any effective forms of treatment.
“This is a completely unacceptable situation for a disease that is twice as common as multiple sclerosis and where a new report has estimated that it is costing the UK economy around £3.5billion in lost taxes, healthcare and benefit costs.”
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Rosie Halsall: “I’ve not been diagnosed with any mental health illnesses.” Yet there she is in a wheelchair. So why are Sharpe, Chalder, White, Crawley et al still pursuing psychiatric and behavioural studies rather than biomedical studies? To draw away attention and funding, from what is manifestly a biomedical problem, is nothing short of perverse.