For the past year, 28-year-old Natalie Price has been living in darkness and silence.
In 2014, she was diagnosed with myalgic encephalomyelitis, commonly known as ME or chronic fatigue syndrome. Sufferers complain of symptoms including extreme tiredness and fatigue, constant pain, extreme headaches and sensitivity to light and sounds.
Since being diagnosed, Natalie’s condition has deteriorated. She is now confined to her bedroom and is almost totally reliant on her fiancé, Jonathan Vaughan, to care for her. Over the past month, he has kept a video diary on his phone for our current affairs programme ‘Y Byd ar Bedwar’.
He says the condition has robbed him of a relationship with the woman he fell in love with:
“From my point of view, I’ve fallen in love with someone and I’ve virtually lost them even though they’re just upstairs. I barely get to see her most days.”
“It’s not a relationship as you’d expect, it’s me helping her as much as I can.
We’re lucky we can get about 10-15 minutes maybe a day together, and a hug before bed time.”
The couple met five years ago, when Natalie was a student at Cardiff University. She was born in Stoke and moved to Cwmbran when she was three years old.
An active person, she enjoyed running, travelling and playing with her beloved dog Lucy in the park. But after collapsing several times on her way to university and during a shift at her part time job, she underwent a series of tests. Eventually she was told she was living with ME. But according to Jonathan, the doctor didn’t have much advice for her:
“When Natalie was first diagnosed the GP told her there are no specialists and I don’t know anything so you’re going to need to Google it.”
Around thirteen thousand people in Wales are thought to be living with ME. There is no cure and little understanding of what causes the condition.
NICE, the body which sets guidelines for treating illnesses, are currently reviewing guidance for doctors on treating patients. The guidance currently states patients should be offered cognitive behavioural therapy (CBT) and graded exercise therapy (GET). But patient groups have voiced concern as to the suitability of these treatments, claiming that GET especially can cause more harm than good. The review findings will be released next month.
As honorary medical adviser to the ME Association, Dr Charles Shepherd is a co-opted member of the committee set up by NICE to review the guidelines. He says provision for ME patients in Wales is particularly poor.
“The situation in England is not perfect, but at least we do have a network of hospital-based referral services. In Wales, where there just aren’t hospital-based services for people to go to, [the situation] is even worse there.”
“I think the response from the Welsh Government has not been satisfactory. There has been a taskforce set up, it has been doing this work for many years, but it really hasn’t made the progress it should have done. People in Wales, as far as I can see, are no nearer getting these services.”
In a statement, a spokesperson on behalf of the Welsh Government said:
We understand the challenges faced by people living with this condition and the impact it can have on their lives and their families. That is why we are working with healthcare professionals and the third sector to strengthen ME services available across Wales, this includes piloting the use of digital technology to support the delivery of our care programmes. We recently launched guidance for health and social care professionals to support people who have been in pain for longer than 12 weeks. Living with Persistent Pain Wales also provides information about treatment approaches to patients and to their families.
Jonathan Vaughan and Natalie Price feel there is insufficient support available to them through the NHS in Wales. They have opted to raise money online for experimental treatment. Although there is no robust scientific proof these treatments will improve any of the symptoms of ME, the couple feel they have no other option.
“These treatments are totally experimental but that’s the problem we have with ME. Nothing has really been proven. We’ve got to look into all the options, including experimental treatments and investigate them ourselves.”
Y Byd ar Bedwar will be broadcast tonight at 9.30pm on S4C. English-language subtitles are available.