Saturday, 6 January 2018

“It has taken my life” – Sheringham woman speaks out about living with the debilitating disease ME | 06 January 2018

 


Eastern Daily Press, 05 January, 2018.

When former barrister Jo Byrne-Green was struck by a mystery virus 23 years ago, she expected to be back on her feet within a few days.

Former barrister Jo Byrne-Green, who suffers from ME, chats to north Norfolk MP Norman Lamb. Photo: KAREN BETHELL

But, when her symptoms dragged on into weeks, and then months, she began to suspect she had more than just a case of the flu.

“It just hit me, I felt like I had never felt before, I could almost feel the blood coursing through my veins,” she explained.

Although her GP could find nothing wrong, Mrs Byrne-Green, 67, was struggling with symptoms ranging from joint and muscle pain, to insomnia, tremors and an overwhelming sense of complete exhaustion.

And when her condition deteriorated so far that she needed to be hospitalised, she decided to take matters into her own hands.

“I was crawling around my flat, I couldn’t look after myself, I couldn’t wash, I couldn’t do anything,” she said.

After being sent home, she arranged to see a consultant privately and, six months after first becoming ill, she finally received a diagnosis of myalgic encephalomyelitis, or ME.

Also known as chronic fatigue syndrome, the disease is associated with up to 60 symptoms ranging from debilitating fatigue and headaches, to vertigo, digestive problems and cognitive impairment.

After spending three years feeling too ill to be able to leave her flat, Mrs Byrne-Green began to improve and, after meeting future husband Richard, moved to Sheringham in 1995.

She has since relapsed and now spends most of her time in bed and is forced to rely on a wheelchair to get from one room to another.

She is unable to watch television or read without becoming exhausted and her only social interaction consists of visits and phone calls from friends.

“I was fit, I went rambling and went to the gym,” she said. “But ME has taken my whole life and any fulfilment I might have had.”

Keen to help raise awareness of the disease, Mrs Byrne-Green invited north Norfolk MP Norman Lamb to visit her at home ahead of a screening at Sheringham Little Theatre on January 11 of the oscar-nominated film Unrest, which charts one couple’s experiences of the disease.

“I don’t think a cure will come in my lifetime,” she said. “But I would like to think there is some hope for the future for youngsters being diagnosed now.”

ME or chronic fatigue syndrome: facts and figures

ME, or chronic fatigue syndrome, affects around 250,000 people in the UK and around 1.7 million people worldwide.

Women are four times more likely to be affected than men.

Sufferers are six times more likely than the average person to take their own life.

One of the main symptoms of the disease, which most commonly affects the nervous and immune systems, is persistent, debilitating fatigue, but each sufferer has a different pattern of symptoms, which can fluctuate and change over time.

In the US, tens of millions of dollars have been put in to funding research into the disease and, in the UK, a project to establish the country’s first centre of excellence at Norwich Research Park is in the pipeline.

There is no cure, but patients can be offered treatments including sleep therapy, nutritional advice and cognitive behavioural therapy to help manage their symptoms.

Film charts struggle of couple living with ME

The oscar-nominated film Unrest tracks the story of Harvard PhD Jennifer Brea, and that of her partner Omar as they are both struck down with ME.

While Omar rapidly recovers, Jennifer ends up bed-bound with mysterious symptoms which are initially misdiagnosed as being psychosomatic.

The film, which has been screened at venues all over the country, as well as in parliament, will be followed by a Q & A session with a panel of Norfolk-based experts and patients.

Mr Lamb, who will be attending the screening, said: “I have been conscious of this issue both as an MP and as a lawyer for some time, and of the wholly inadequate support people get from the NHS. But people with ME don’t make the front page, so this initiative is very valuable as it puts a spotlight on a condition that is poorly understood.”

 

Tickets for Unrest, which will be screened at Sheringham Little Theatre on January 11 in partnership with North Norfolk ME/CFS Support Group, are available from the box office on 01263 822347.

The group meets at 2.30pm on the first Saturday of the month at St Peter’s Church hall, Sheringham. For more information, phone 01263 740044.




from ME Association
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