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Friday, 25th July 2008

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ME: more sufferers, more support


How a local man used his own experience to bring chronic fatigue syndrome patients together to talk

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Published Date: 25 October 2007
How a local man used his own experience to bring chronic fatigue syndrome patients together to talk
Oliver Rooke was 19 when he was struck down by glandular fever.
The Seaford resident was studying at Kent University when he first became ill.

He said, "I went to the university doctor and did some tests and they came through positive for glandular fever. She said to rest for about four - six weeks and it would just pass."

But Oliver, now 31, was so ill that a couple of months later he had to leave his course because he was suffering continuously from mental tiredness.

A year later he was diagnosed with Chronic Fatigue Syndrome (CFS).

Oliver said, "The unique thing about CFS is it's an umbrella term for lots of things which may have different causes. Mine was triggered by glandular fever and it can be triggered by stress or trauma."

The illness, which is also known as ME (Myalgic Encephalomyelist) and can affect anyone of any age, meant he was unable to return to university.

It is estimated that around 250,000 in Britain are affected by this illness of unknown cause, which has many different names and symptoms.

Oliver said, "It's a case of managing the symptoms, managing day to day and trying to live with the illness.

"They set up a clinic in Haywards Heath a couple of years ago that is seeing patients who have been referred by GPs because they recognise the cases are increasing."

Oliver's illness has affected him in that he sometimes has difficulty with concentration, for example, reading a book, watching a TV programme or playing a board game can be challenging for him. But other sufferers find they are physically tired rather than affected mentally and may even struggle to get out of bed.

Oliver says the best way forward is to keep positive and pace yourself when doing various activities.

He is currently kept busy with running the Defenders of the Ouse Valley and Estuary (DOVE) website and is a volunteer for Newhaven Community Employment Partnership (NewCEP), which aims to assist local people to access work, learning and volunteering opportunities.

Because of his illness Oliver decided to set up a local branch for fellow sufferers two-and-a-half-years ago.

He said, "There were groups in existence in the area through the Sussex ME/CFS Society (a registered charity). There were groups in Lewes and Eastbourne and I went to a few of these and I thought I would try to start a local group operating in Seaford to see what the reaction would be.

"In the early days it was quite small but as time has gone on it has gradually grown and is now quite popular."

The group, which meets once a month at Nott's Coffee House in the town, chat to each other about their symptoms and how they have been coping.

"It's general support, having someone to listen to and talk to.

"It's good for people because often others they speak to do not thoroughly understand the illness and how it affects them."

Oliver, who is hoping to eventually work full-time in a job that is computer-related, has been referred to the clinic in Haywards Heath where various activities he does are being assessed.

The aim is to build up activities to a level he can manage without stretching himself.

He added, "I think awareness is better now and this is particularly down to the numbers of sufferers, more and more people are starting to suffer with it and seeing their doctors and talking to their friends about it. There are more people who know someone with ME or who have ME.

"I have to try and look at things, things could be worse and so I have got to try and look at the positive and think of what I can do rather than what I can't do .

"There are some people who can't get out of bed and are worse off than me."

Anyone who would like more information can call the information line on 01273 674828 or visit the website www.measussex.org.uk

Or you can contact Oliver direct on 01323 896741 or e-mail him.

The full article contains 694 words and appears in n/a newspaper.
Page 1 of 1

  • Last Updated: 25 October 2007 5:17 PM
  • Source: n/a
  • Location: Eastbourne
 
 
  

 
 


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