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James Rodger, The Mirror, 08 May, 2018.
Chantelle Parry, 31, was an adrenaline who used to love skydives – but now she has to rely on others to look after her daughter, cook for her, clean her house and even wash her hair.
A young mum who described herself as a party animal adrenaline junkie was left unable to cook, clean or wash herself by a disease that some doctors don't think is real.
Chantelle Parry, 31, fell ill with glandular fever two years ago.
This set in motion a downward spiral that eventually led her to be diagnosed with myalgic encephalomyelitis, also known as ME or chronic fatigue syndrome.
The super-fit party animal loved to dance as much as she loved going out at weekends.
Now the mum to eight-year-old Alice can only dream about dancing.
“I was an adrenaline junkie who had done three skydives – now I can't work, spend weeks in bed and am unable to do anything,” she told Birmingham Live.
“I have to rely on others to look after my daughter, cook for me, clean my house and even washing my hair.
“I feel like I have lost my independence and have nowhere to turn to.”
Chantelle later found out she had ME.
She says even bright lights can put her back in bed and one of the most upsetting things about ME is being forced to justify her disability.
She said: “I almost feel like I spend my life trying to explain my illness to people.
“I always get the response ‘oh that's where you are tired, isn't it?'
“But it's so much more than tiredness – it's fatigue with the worst pain imaginable – and I've had a baby.
What is ME?
The most important recognisable symptoms are are: exhaustion not relieved by rest, exercise-induced muscle fatigue, post-exertional malaise/symptom exacerbation, problems with short term memory, concentration, attention span, unrefreshing sleep, problems with pulse and blood pressure control leading to feeling faint and orthostatic intolerance.
On going flu-like symptoms including sore throats and enlarged glands can also occure.
Other common symptoms include: pain – which can involve muscle, joints and nerves, alcohol intolerance, problems with balance and temperature control, sensitivity to light and sound.
It's not known what causes ME, but there are a number of theories – for example, it may be triggered by an infection, or certain factors could make you more likely to develop the illness.
Suggested causes or triggers for ME include viral infections, such as glandular fever; bacterial infections, such as pneumonia; problems with the immune system; a hormone imbalance; your genes – ME seems to be more common in some families.
ME is a fluctuating condition – meaning that the symptoms vary throughout the day and from day to day and week to week.
ME is diagnosed on the typical clinical history and excluding other causes of an ME/CFS like illness. There are no blood or other diagnostic tests available.
The most important aspect of treatment involves activity management – which involves striking the right balance between activity and rest. This is known as pacing.
Drugs can be used to help with symptoms such as pain and sleep disturbance.
There is no form of curative treatment at present – although several drugs are being assessed in clinical trials.
“I feel like my independence has gone yet I still have all the dreams of things I want to do.
“We shouldn't be the millions missing.”
ME affects the lives of 250,000 people in the UK, including children and teenagers. Millions worldwide are affected.
But there is some debate in the medical world about whether the disease is real, how it is caused or what is the best way to treat it.
Dr Charles Shepherd
The ME Association is fighting to improving access to care, treatment and research and removing the disease's stigma.
ME Association medical adviser Charles Shepherd said: “Despite being recognised by the World Health Organisation as a neurological disease, and a report from the chief medical officer of health calling for more research and a network of hospital based clinics, 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 is costing the UK economy around £3.5 billion in lost taxes, healthcare and benefit costs.”
This week is ME Awareness Week. More information is available here.
The ME Association
We help people with M.E. and their families.
If you would like show your support for our vital work then please donate whatever you can afford to our ME Awareness Week Just Giving campaign – Go BLUE for ME.
Help us continue to make the UK a better place for people with M.E.
Thank you.