The Sun: Devastating Disease – Family of girl killed by ME reveal how they were told by doctors it was all in her head, before it robbed her of everything | 09 May 2018

 


Please be sure to visit the article in The Sun online. It features a video clip from the BBC Newsbeat documentary, ‘M.E. and me’. The more visits The Sun register, the bigger the impact, the more people they will reach, and the greater the potential for raising awareness of these important issues.


By Natasha Wynarczyk, The Sun, 08 May, 2018.

Merryn Crofts was 21 when she died last year after battling chronic fatigue syndrome. A new documentary, ME and Me, takes a look at the disease that is still not taken seriously by some medical professionals.

Merryn Crofts, right, with her mum Clare, sister Amy and step-dad Dave Norton.

Chronic fatigue syndrome – or ME (myalgic encephalomyelitis) – is a highly debilitating illness and affects a quarter of a million people in the UK.

The 25 per cent who suffer from it most severely are often left be left bed-bound for weeks, months or years at a time – but those with the condition, nicknamed “yuppie flu”, are often accused of faking their symptoms for attention or to get out of school or work, or are told their illness is psychological rather than physical.

Her mother Clare watched on helplessly as her daughter, once a “bundle of energy”, started to feel extremely fatigued, falling asleep on the couch as soon as she came home from school.

“It was like watching a wind up toy run out of power – and it kept happening. “When she was 18 she hadn’t been outside for a year.” she says.

A rapid decline

ME sufferer Merryn Crofts died aged 21 in May 2017

Merryn’s decline was rapid – a year after the onset of symptoms, she was unable to walk and was in a wheelchair.

She was in so much pain, she couldn’t even bear to be hugged by her mum.

Merryn was initially diagnosed with “conversion disorder”, where symptoms are thought to have a psychological cause, before she received the diagnosis of ME from a private specialist in 2012.

Due to the stigma of the condition Merryn was “embarrassed” about having ME, and was reluctant to tell people that was what was wrong with her.

“It’s ridiculous, could you imagine someone with cancer saying that?” says Clare.

Merryn Crofts was a bubbly and energetic teen before ME took hold.

Eventually, Merryn was unable to eat as ME ravaged her body and caused her to vomit everything she consumed.

Weighing just six stone, she needed a feeding tube, until she contracted an infection that meant she could no longer be fed this way.

This is one of the factors which led to her tragic death on 23 May last year.

Killer disease

The coroner’s inquest into Merryn’s death is due to take place this month, however her family hope that ME will be recorded as the cause of her death – to prove just how serious the condition can be.

Clare says: “ME robs the smallest things from you. You can’t shower – Merryn couldn’t even have a wash in bed, even if I was doing it because it was a choice between do you wash her, or do you sit and hold her hand for a bit and talk to her?

A year after the onset of symptoms, Merryn Crofts was unable to walk and was in a wheelchair.

“She had so little energy. She was such a huggy girl and would feel so guilty about how she couldn’t hug me because she couldn’t lift her arm up.”

If Merryn’s death is recorded as such, she will be just the third person known to have died from the illness, after 32-year-old Sophia Mirza in 2006 and 18-year-old Victoria Webster in 2013.

Living with ME

ME and Me lays bare the reality of life with the condition, shining a light on severe sufferers, as well as looking at the latest research into the little-known disease.

It is presented by Emma Donohoe, 24, who like Merryn, was struck down by ME as a teen following  glandular fever – a viral infection causing extreme tiredness, swollen glands and fever.

Presenter Emma Donohoe, who has had ME since the age of 19.

Two years later, she was finally diagnosed with ME, after multiple visits to her GP, a barrage of hospital tests and months of being housebound.

Speaking to Sun Online she says: “Seeing the photos of Merryn before she was ill and to see the decline she went through was just shocking.”

“It took a long time to come to terms with this, I’ve never been as severe as she was but it’s scary finding out you have a condition that could kill you. It’s so unfair what happened to Merryn, and it made me really angry.”

A lack of understanding of the condition is something Emma knows all too well.

“At my worst, I spent 90 per cent of my time in bed,” says Emma. “All of my friends were going to university, but I couldn’t even stand up on my own long enough to have a shower.

What is M.E.?
It is thought 250,000 people in the UK have ME, which is also known as chronic fatigue syndrome (CFS). It can be triggered by a viral or bacterial infection, hormonal imbalances or immune system problems. There can also be a genetic link.
The main symptom of ME is intense fatigue that doesn’t improve with rest and worsens with activity. ME can affect people of all ages, but often develops in late teens or early 20s, with it affecting women four times more than men.
Other symptoms can include agonising muscle pains and spasms, light intolerance, stomach cramps, paralysis, memory and concentration problems called “brain fog”, and passing out when standing up. 25 per cent of people with ME are believed to be “severely affected’ meaning they are completely housebound and unable to work or do even basic tasks.
If people with ME do too much – in some cases it can be something many of us take for granted such as taking a shower, having a conversation with a friend or taking a short walk to a local shop – they can suffer devastating “crashes”, where symptoms intensify. For more information, see meassociation.org.uk

 

“I constantly felt as if I was simultaneously having the flu and the worst hangover of my life. Yet all I was offered was psychological therapy, and GET [Graded Exercise Therapy] which made me worse.”

Emma’s main motivations for making the documentary are to raise awareness of the condition and to create something that a young person who had recently been diagnosed with ME could watch and feel less alone.

It’s like ‘living death’

Sophie Cooklynn is bedbound due to severe ME, and can only see her son for five minutes a day.

One of the severe sufferers Emma meets is Sophie Cooklynn, 21, from Bootle.

Heartbreakingly, ME has robbed the former photographer of a simple mother’s right – spending time with her little boy Lucas, 2.

Sophie spends her days blindfolded and lying silently in a dark bedroom – something she calls a “living death” – as even the sound of her son’s voice can trigger devastating symptoms such as pain and paralysis. On a good day she is able to spend five minutes with Lucas.

Hope for a cure

Another ME patient is Hannah Steinbergs, who has recently lost a staggering 12kgs from her already small frame after being unable to keep down even water. But there is hope on the horizon.

Emma visits the UK ME/CFS Biobank at the London School of Hygiene and Tropical Medicine, which is running the main European study into the causes of the condition and is searching for better treatments.

Hannah having her heart rate measured as part of the clinical trial.

Hannah is one of those participating in study, donating her blood and having her heart rate measured.

ME patients who have died have shown a condition called dorsal root ganglionitis – inflammation in the nerves that carry information between the brain and the spinal cord so Merryn’s brain has been donated for scientific research.

A small proportion of people with the condition will get better.

Although she wouldn’t describe herself as “recovered” and says she still has bad days, Emma has greatly improved after seeing private nutritionists who specialise in ME. She is planning to study anthropology at university in September.

Emma Donohoe at an ME research lab.

“What works for one person with ME will not work for another, but every day I take a fistful of supplements, and I eat a paleo diet, avoiding processed food.

“I think ME is starting to be treated more seriously, and the research out there is promising – however there is a really long way to go.”

ME and Me is available on BBC iPlayer from today, Tuesday 8 May. It is also now available on the BBC Newsbeat YouTube channel.


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