Great Article!

http://www.thesouthernreporter.co.uk/news/ME-sufferers-reach-out-to.5239081.jp

ME sufferers reach out to raise awareness

Published Date: 07 May 2009

By Andrew Keddie

A NEW support group has been formed to help the estimated 100-plus ME sufferers in the Borders, writes Andrew Keddie.

And it hopes to raise the profile of the neurological illness, which hits the central nervous and immune systems, at two fundraising events next week.

These will be held in Kelso on Tuesday, which has been designated International ME Awareness Day.

The group, which also holds monthly support meetings in Kelso and Galashiels, was created six months ago by Carole Carrick of Duns and Miranda Brackenbury from Greenlaw: two long-term sufferers who became close friends last year.

“The prevalence in the Borders of myalgic encephalomyelitis, also known as chronic fatigue syndrome, is relatively high, given that there are an estimated 240,000 sufferers in the whole of the UK,” said Carole. “So we set our minds on helping fellow sufferers and offering them the chance to meet over a cup of tea and have a chat which people who really understand this complicated and devastating illness.”

These regular drop-ins take place at the Mayfield Garden Centre coffee shop in Kelso on the second Tuesday of each month at 11am, and at Asda’s cafe in Galashiels on the fourth Monday at 2pm.

But the pair, who have each had ME for 10 years, see Tuesday’s big day as crucial in taking their initiative forward and raising funds for future meetings and advice-sharing newsletters.

So what is the impact of ME on sufferers?

“Imagine you have just woken up with a really bad dose of flu,” said Miranda. “You ache in every fibre of your being, you feel absolutely drained of energy and are totally exhausted even after a trip to the bathroom. Your head pounds, your muscles are throbbing and you feel light-headed and nauseous. All you want to do is curl up in bed and sleep until it goes away.

“This is how ME sufferers feel almost every day. Each day feels like a challenge and, on some days, you feel like you have run a marathon even without leaving your bed. It’s an overwhelming and life-changing illness that leaves many people housebound and unable to live normally.”

Carole accepts there is no specific diagnostic test – and still no known cure – for the condition.

“Research into finding a cure is obviously vital but, apart from that, all we sufferers ask is that our illness is understood and recognised because many people have to endure constant scepticism and disbelief, even although ME is classified as a neurological illness by the World Health Organisation and has actually been documented for centuries. As a result, sufferers often feel overwhelmed, isolated and don’t know where to turn.”

May 12 was chosen as International ME Awareness Day because it is the birth date of Florence Nightingale, the nurse who inspired the founding of the International Red Cross.

“It’s believed Florence Nightingale suffered from a paralysing ME/CFS-like illness in her mid-thirties and spent the last 50 years of her life virtually bedridden,” said Miranda.

“Despite her illness, she managed to found the first school of nursing and it is fitting the Lady of the Lamp now shines as a ray of inspiration and hope to modern-day victims.

“One of the most difficult aspect of having ME is that most of the symptoms are invisible making it hard for others to understand what living with the illness is really like. That is why Tuesday is so important, not only in highlighting the need for further research, but promoting a better understanding of the condition, in particular with regard to health and welfare provision. Help and support are absolutely paramount to sufferers.”

Carole revealed the supported monthly drop-ins have been well attended and many new friendships formed.

“As word spreads, we hope to reach out to more people, perhaps those who are housebound. Many people can’t make it along to the meetings due to the severity of their illness, so we propose to produce a newsletter to bridge the isolation these people feel.”

But Miranda admitted: “We urgently need funding to assist the work of the group and its team of dedicated volunteers.”

The group will hold two Kelso fundraising sessions on Tuesday at the Mayfield Garden Centre, Glebe Street, from 10am till noon, and at the Somerfield supermarket in Roxburgh Street from 2pm till 4pm.