A 22-year-old woman from Birstall has described the energy-sapping effects of an incurable illness which often leaves her with so little energy that she can't even put on her make-up.
Catherine Allen spent years going to the doctors as a teenager, only to be told that her tiredness was just like that of any other adolescent.
However, a visit to a specialist ME clinic at Seacroft Hospital in Leeds revealed that Catherine has ME, an energy-sapping illness with no known cure.
The former TV reporter now wants to highlight awareness about the issue that which affects around 250,000 people across the country.
She told our sister title ExaminerLive: “You can see the difference between how bright I look when I have the energy to put make-up on, and how tired I look when I don’t.
“The truth is that inside I feel constantly exhausted, no matter how much sleep I get.
“Sometimes getting up feels like I’ve run a marathon after drinking two bottles of wine and then been beaten all over.
“ME is seen by some people as just being tired - but it is a tiredness that goes so deep that your bones ache.”
ME (myalgic encephalomyelitis) is a brutal incurable condition also known as chronic fatigue syndrome. It can affect some patients so severely that they spend their days in darkened rooms, unable even to watch TV or listen to music.
Even touch is intolerable and many are tube fed. There is no cure or even a diagnostic blood test.
Catherine, a former TV reporter, was diagnosed in 2017 when studying at Worcester University.
She said: “I’d been going to the doctors for years telling them I constantly felt weak, tired and just washed out.
“The blood tests would all come back completely clear and I’d just be told ‘she’s just tired, like most teenagers are’.
“I’d done some research and I felt sure I had ME.”
Catherine secured a referral to Seacroft Hospital in Leeds, which has a specialist ME clinic.
She said: “In my first appointment, I explained all of my symptoms and the trauma I’d been through and my occupational therapist confirmed I had ME.
“I cried - but with relief. It sounds ironic but I was just glad to know it wasn’t in my head and there was a reason I felt so rubbish.”
ME causes extreme exhaustion, pain, brain fog, and a variety of other symptoms - with the cruel hallmark that they are made worse through even bare minimal exertion.
So even going for a shower, or going to the toilet, can strike down an ME sufferer for days or even weeks.
Catherine, who works part-time from home, said: “ME has changed my life in the sense that I’m now more aware of what I can and can’t do.
“It’s changed my family dynamic, I live with my mum, dad and sister and we’ve all had to work really hard together to understand this condition and they now understand me a lot better.
“They understand why I’ve been moody and unable to get out of bed at what they might have deemed a reasonable time.
“They understand my pain levels and sensitivity to light and noise now and they support me in the most incredible way, I wouldn’t have got through my appointments or my bad days without them.
“My life isn’t limited but I know if I didn’t take time to rest, or pace myself, then I would be a lot worse.
“But my life is different, I’m a very positive person and so will never let it define me, but I’m very much aware that it’s there and that too much of anything could land me in bed for days.”
The ME Association is at the forefront of improving access to care, treatment and research and removing the disease’s stigma. In November, the charity announced it had put £200,000 towards three new research projects.
Dr Charles Shepherd, medical adviser to the ME Association, said: “There are an estimated quarter of a million people in the UK suffering from ME.
“Yet this cruel condition remains significantly misunderstood because those affected are often hidden away.
“We urgently need more funding for research into treatments for ME so people like Catherine can have hope of reclaiming their lives.”
For more information on ME, or to support research through donations, visit www.meassociation.org.uk.
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