ME sufferers don't have to feel isolated thanks to new group

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Saturday, July 03, 2010
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This is Scunthorpe

A WOMAN who suffers from Chronic Fatigue Syndrome is starting up a support group for local sufferers.

Sarah Mann, who recently moved to the area from Newark in Nottinghamshire, has suffered from chronic fatigue syndrome (CFS) also know as myalgic encephalopathy (ME) for two years.

She said: "I used to commute to London daily two years ago, when I suffered from a series of viral infections followed by what was initially thought to be post-viral fatigue.

"After a year with no improvement I was diagnosed with ME/CFS.

"Two years later with the help of a support group, an understanding doctor and good friends and family I have made some progress.

"Unfortunately, not everyone is as lucky as me and can be housebound for many years." There is no recognised cure for ME/CFS and there is no test available to confirm the diagnosis of ME.

In some severe cases, the disease can leave sufferers bedridden.

"Because ME can be a debilitating disease, it often leaves people feeling isolated," said Sarah.

"This can often lead to depression."

ME usually affects people between the ages of 20 and 40 and is sometimes referred to as Chronic Fatigue Syndrome, as it often occurs after an infection.

Symptoms include severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory and concentration and is sometimes referred to as the "invisible disease".

Sarah said: "I think people who have not been affected by the disease are sceptical, as there are no tests for it.

"You have to be tested for everything else before a diagnosis of ME can be passed.

"People who suffer from ME can look well but, inside, they are not."

Currently, the nearest NHS services for ME sufferers are at Grantham – nearly 60 miles from Scunthorpe.

Sarah, 36, of Burringham, said: "The problem with having no local services is that ME sufferers don't have the energy to travel.

"With local support groups, people have the opportunity to talk about their concerns and share their worries."

Sarah explained ME can affect anyone, even the most active people. She said: "I was living a very active life in London, so it was very difficult going from that to not having the energy to do anything."

There are several national services available to sufferers of CFS/ME and Sarah stressed the importance of not suffering alone.

She said: "Everyone is affected by the illness differently. But for me, it limits my energy to a few hours of light activity a day, decreases my physical strength and concentration and disrupts my sleeping pattern.

"Obviously this has a consequence on my work and any social life I may have once had.

"It is quite common for people that have had a full career and an active social life to be affected."

Anyone interested in joining the support group run by Sarah should e-mail scunme@gmail.com

For more information on ME, visit www.meassociation.org.uk

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