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ME Awareness Week 2015 (11-17 May)

08 May 2015

Health Care

Next week (May 11 to 17) is ME Awareness Week and Southend University Hospital’s Chronic Fatigue (CFS) Service and its service users are spreading the message that being diagnosed with ME/CFS is far from game over and recovery and a fulfilling life is achievable.

ME affects around 250,000 (1 in 250) people in the UK including men, women and children of all social and ethnic backgrounds. As many as 25,000 young people and children may have ME.

The cause of the condition is as yet unknown. What we do know is that it is a condition consisting of various signs and symptoms, the main one being persistent and excessive tiredness or fatigue made worse by activity, and not alleviated by rest.

PHOTO: ME sufferer Colin Brodie, 47, from Basildon and Linda Simpson, a cognitive behavioural therapist at the Chronic Fatigue Service.

Case study: Colin Brodie, 47 from Basildon

Former electrician Colin Brodie used to be a very 'busy, busy, busy' man but when he developed pleurisy two year ago, his recovery signalled the beginning of a much longer and challenging illness: the neurological condition known as myalgic encephalomyelitis (ME) otherwise known as chronic fatigue syndrome.

In the space of weeks Colin literally became the opposite of who he was: his clear, quick thinking brain turned into what he calls 'brain fog' and he had to give up his adult education teaching job.

A former tradesman, Colin uses a battery-related analogy to explain how he feels: "I used to have super-duper rechargeable lithium-ion batteries, the sort of thing I'd have in my big power drills, which you could recharge in about half an hour and  would then be ready to go again. When I developed ME it was like someone had replaced them with horrible old NiCad batteries that discharge quickly, and never fully recharge."

At his worst, Colin's days consisted of just eating and sleeping.  He would flit between spending whole days in bed to not being able to sleep at all. He also has to deal with the stress of constant physical pain: "My fingers feel like someone has whacked them with a hammer," Colin admits, "and I know exactly what that feels like because I've accidentally done it to myself when I was a working tradesman."

Getting help from the Essex Chronic Fatigue Service

Colin was eventually referred to the Essex Chronic Fatigue Service, a county-wide service run from Southend University Hospital, with outpatient assessments and therapy sessions held throughout Essex.

The service assesses people holistically by looking at sleep patterns, diet and activity levels. If there are issues with sleep as in Colin's case, they can teach people sleep hygiene principles and how to relax and switch their minds off.

Linda Simpson, a cognitive behavioural therapist at the CFS Service, who has worked closely with Colin for the past 18 months, said: "Colin has made a lot of progress from when he first came to see us at the CFS Service.  I think one of the problems most people have is something we call 'boom and bust' activity, where sufferers continue their old ways and cram as much activity into one day and then just crash, literally wiped out for two or three days and then repeating that pattern. So we spend a lot of time trying to get people to find a baseline routine they can consistently achieve and then get them to do more over time."

The stigma of ME/chronic fatigue syndrome

As if there weren't already enough hurdles to leap, ME sufferers also have to deal with the social stigma of the illness and reluctance from both the public and professionals to accept the illness even exists.

Linda says: "A lot of negative messages appear in the press such as 'your life is over' and we even hear negative messages from other medical professionals such as 'you'll never work again, just forget it'. This is so negative because being positive and trying to understand it means people can get their lives back."

Colin has even lost good friends because of his illness and almost daily he reads or overhears disparaging comments. "People who don't have ME don't accept that the condition exists," says Colin. "I read a comment online this week saying: 'It must be great being able to go home and do nothing and not have to work'.  How insulting? You wouldn't say that to somebody who has got cancer or any other debilitating illness."

On the road to recovery

Colin's recovery has seen him fully accept that he has the condition and, more importantly, he has adapted his behaviour and thought processes to better manage and deal with it. Colin has also made new friends who understand his condition because he met them in online ME forums.

Colin has improved from spending almost all day in bed to swimming regularly, cycling on an exercise bike, finding new hobbies and interests like gardening, photography and entomology. He is also starting to consider resuming a few hours of paid employment in the not too distant future.

One of Colin's big hobbies used to be bird watching especially at Wat Tyler Country Park.  But the amount of walking and cold weather would completely sap Colin's energy.  With the advice and strategies gained from Linda and the CFS service, it means that rather than give up on his hobbies, like many sufferers do, Colin adapted.

"I now do insect photography which I can do in my garden," says Colin. "I'm improving my knowledge of UK flora and fauna too.  I now amble instead of rushing everywhere."

Linda adds: "One of the things people do is give up their hobbies and they lose their social life which makes them more down and fed up resulting in less energy. People can make good recoveries whether it's with the CFS service or on their own. Having the ability to be both positive and prepared to change your life path means you can still lead a productive and fulfilling life."

"You can't be negative and you need to keep a positive mental attitude," says Colin. "It's not game over."

The Essex Chronic Fatigue Service, runs from Southend University Hospital and can be contacted on 01702 385247. You can also email them at cfsservice@southend.nhs.uk.

Next week (May 11 to 17) is ME Awareness Week. More information is available on the Action For M.E website.