Myalgic encephalomyelitis diagnosis has left Ella Engel bedridden

Ella is 20 years old, but it's been almost four years since her feet have touched the ground. She is unable to lift her head, to sit upright and she's often unable to talk or communicate.

She was 14 when she first became sick, but it wasn't until two years later that doctors finally diagnosed her with myalgic encephalomyelitis (ME). It's a condition that's often grouped together with chronic fatigue syndrome (CFS), and Ella's parents Sally Andrews and John Engel are frustrated with the lack of awareness about ME.

READ ALSO: Bed, theatres with a view at new $88m private hospital

Ella has a "catastrophic" case of ME and the condition has become worse in recent years. The last two years have left the once fit and energetic young woman in an often semi-comatose state and fully paralysed.

In comments Ella typed out onto her phone for this interview, she said the feeling of being in a semi comatose state and unable to speak is "utterly terrifying".

"To be fully conscious mentally, but also be in such a zombie-like state, and not have control over your own body, or even be able to wiggle your pinky finger is something I will never be able to describe," she said.

The severity of her ME means that stimulus, including noise and light, can cause her condition to deteriorate. Her room is often kept dark and her blinds have been down against the windows for four years.

Ms Andrews said Ella is able to use her phone for a small period of time each day, but she hasn't been able to watch TV, listen to music or have friends over for four years as it's too much stimuli.

"It's a complex illness, she literally cannot do anything at all," Ms Andrews said.

"It affects all her systems, including gastro, immune, nervous, cardiac, as well as the mitochondria cells, brain and spine."

When Ella was 14 she had a severe flu-like virus that completely wiped her out, prior to that she'd been an active teenager who loved running, surfing and water sports.

READ ALSO: Four drownings as rescue calls spike for lifesavers

"She hadn't been sick before so I didn't even have a regular GP," Ms Andrews said.

For the next two years Ella kept getting sick, and her parents estimate they saw 30-40 doctors before one discovered what was wrong.

"We were at our wits end, they were misdiagnosing her and in the meantime she was just getting worse and worse," Ms Andrews said.

"We're absolutely sure that if she was diagnosed earlier she wouldn't be as severe as she is."

One of her doctors likened Ella's condition to "end stage cancer or HIV".

In the last two months, Ella has regained some of her speech, she's even using her mobile phone to communicate with her much-missed friends.

It's not just the friendships that Ella's missing, Ms Andrews said the family is missing out on time together, and it's impacted their family "dreadfully".

"We used to eat around the dinner table and we can't even do that anymore," Mr Edgel said.

Mr Engel and Ms Andrews said ME does have symptoms that can cross over with other conditions, and they hope to raise awareness by speaking out.

READ ALSO: Recommended rate rise could be tripled under plan to help balance budget

Ms Andrews quit her job years ago to be Ella's full-time carer, and the couple advocate for people who have ME and CFS. The family receive no NDIS funding.

Ella's high school pal Mia Wilson has signed up to complete The Sydney Morning Herald Half Marathon on May 15 to help support her friend.

"Watching Ella's condition decline over the last few years has been devastating, and I felt something needed to be done to help Ella and her family," she said.

"Ella and I share the hobby of long distance running, so I thought what better way to show my support then by doing a half marathon in her honour.

"The aim of this fundraiser is to not only support Ella and her family, but to also create awareness about ME so that we can get one step closer to getting our friend back."

So far, Mia has raised more than $36,000 towards her $50,000 goal through her GoFundMe page.

This year Ella will turn 21 and she's painfully aware of everything she's missing out on.

"It's been really hard for me to come to terms with. My whole life and identity has been stripped from me," she said.

"Everything I loved to do, and everything that made me who I was is gone. At least until we find an effective treatment.

"It's hard to let that sink in as I had so many plans and dreams for my future. I was incredibly driven and ambitious. Not a day goes by where I don't think about the things I wish I was doing with my life."

Have something to say? Send a letter to the editor at: editor@northernbeachesreview.com.au

Our journalists work hard to provide local, up-to-date news to the community. This is how you can access our trusted content: