Claire says “don’t ignore M.E.” as part of awareness month

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A Wallsend woman battling M.E. is urging people not to ignore those with the condition as part of an awareness campaign.

Claire Burn, 53, is one of those suffering from the disabling neurological condition who is sharing her story as part of M.E. Awareness Month with a simple message – don’t ignore M.E.

She said: “I first became ill in 1988 after glandular fever. I have never really recovered from it.

“In 2002 I woke up one morning and couldn’t get out of bed. I was bedbound for three months. I then spent about nine years mostly housebound.”

Claire added: “I have to be very proactive in getting visitors.

“It’s just that everyone gets on with their own lives and forgets you when they don’t see you.

“I have three very good friends who visit when they can and always bring flowers, herbal tea bags or fruit.

“They always love seeing me and vice versa, but they have kids so can’t come all the time.”

People with M.E. experience severe, persistent fatigue associated with what’s called post-exertional malaise (the body’s inability to recover after expending even small amounts of energy; sometimes also called ‘payback’) and chronic pain.

Any physical or mental activity can trigger a flare-up in symptoms.

Claire said: “I’ve had to give up just about everything. I can occasionally manage to do a teeny bit of a hobby, but it always has massive ramifications on my health.

“I always have to weigh up whether the happiness it brings will be worth the pain and fatigue it will bring in bucketfuls. I avoid doing anything that will make me bedbound again; it is very hard way to live.”

Clare copes with the symptoms by balancing what energy she has with regular rest periods. However, it is not a cure – there is no pharmacological cure for M.E.

She said: “Pacing, as far as it is possible, does work.

“But in the real world, rather than on paper, it is very difficult to keep up constantly. If I paced all of the time, I would rarely do any activities at all, which is not good for my mental health.”

For more about M.E. visit www.actionforme.org.uk or call 0117 927 9551.