Blackfen ME patient vows not to suffer in silence
PUBLISHED: 09:23 16 May 2013 | UPDATED: 09:23 16 May 2013
"I suffer from nausea and sickness and I'm very stiff with extreme fatigue, sometimes to the point of not being able to walk," says Blackfen resident Cathy Hannon.
To many, ME remains a mystery, which is why sufferers are keen to lift the lid on the condition and show people what it’s really like to live with it.
It stands for Myalgic Encephalopathy and is similar to chronic fatigue syndrome, but the two are not interchangeable.
According to Cathy, who has lived with the condition for the past 11 years, it is much more than feeling tired and stiff.
She was forced to give up her two-decade banking career when she could not carry on working. She also has a young relative who has had ME for the past seven years who did not want to be named out of fear of embarrassment.
What is ME?
ME is a neurological condition whereas the main symptom of chronic fatigue syndrome is constant tiredness.
There are about 30 symptoms connected to ME and they vary from person to person.
About 250,000 people in the UK have some form of ME/chronic fatigue syndrome, while one in 100 children are affected.
“More people have heard of it now than when I was diagnosed, but it’s still very misunderstood,” says Cathy.
“A lot of people think it’s just tiredness and that’s simply not the case. There are about 30 symptoms you could get, including migraines and a poor immune system. It’s very hard to explain, but I would describe it as constantly having really bad flu.”
The NHS website says: “Myalgic Encephalopathy (ME) is the term preferred by some people who feel that chronic fatigue syndrome is too general and does not reflect the severity and different types of fatigue. It also highlights the fact that fatigue is not the only symptom of the condition. Anyone can be affected, though it is more common in women than men, but patients, especially younger ones, can improve over time.”
Mother-of-two Cathy, of Orchard Rise West, was medically retired at 38, about 18 months after diagnosis – something in hindsight she now regrets. “It was as if ME was taking everything from me,” she comments.
As a previously healthy professional mother, being told she had the condition came as quite a shock.
“When the symptoms started I had no idea what was wrong with me. I went to the doctors and all the tests came back clear.
“Then my husband Ned read a newspaper article about someone with ME who had almost exactly the same symptoms as me. We took the article to my GP and when he couldn’t diagnose me, we went to a private neurologist, who put his finger on it. It was a relief but very scary.”
Cathy says she has been helped most by The Lightning Process, a three-day training programme, not a therapy, which involves telling yourself you are OK when you feel symptoms coming on. This is because founder Phil Parker believes ME is caused by a breakdown in the nervous system.
When her relative was diagnosed with the condition seven years ago, Cathy decided to hold a charity coffee morning to support the Association of Young People with ME (AYME). She has repeated it every year since and last month it was held at the Jolly Fenman Pub in Blackfen to fit more people in. It raised £380.
“Having two of us with ME takes a lot out of the whole family. I’m convinced there might be a genetic link but more research needs to be done and awareness needs to be raised.”
For more information on AYME, visit ayme.org.uk.