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ME sufferers plead for research into their illness

Wednesday 15 July 2009

ResearchThe South Wales Echo reports:

ME is one of the most misunderstood illnesses. Ceri Isfryn spoke to three sufferers whose dreams have been shattered by the condition

CAN you imagine not sleeping for 48 hours, then running a marathon with a hangover and a dose of flu? That’s how it can feel to have ME.

Myalgic encephalomyelitis, or chronic fatigue syndrome, causes long-term and in some cases debilitating exhaustion which is rarely relieved by sleep.

The first symptoms are often similar to flu, but they do not go away and, in many cases, may become worse.

It is estimated that 250,000 people in the UK have the condition. Anyone can develop it, although it appears to be more common in women, who make up 75% of cases.

Someone who knows full well the impact of the condition is ex-flautist Eleanor Dent, who tutored young musicians at the Royal Welsh College of Music and Drama. However, since developing ME six-and-a-half years ago, she has been unable to play her flute or work at all as she doesn’t have the mental or physical energy to do either.

Eleanor lives with her husband John and two teenage children in Heath, Cardiff. Eleanor gets frustrated as her husband has to do all of the household chores while also holding down a full-time job as a project manager with the Vale of Glamorgan County Council.

“My muscles are too weak to even use an iron, so I have to pay somebody to come in. If I do too much housework, I make myself ill and it takes days to recover.”

“I can just about walk 100m once a week if I’m lucky, but some weeks I can’t even manage that.”

“I’m 49, yet I feel at least 30 years older because of ME.”

Remarkably, there is no diagnostic test available for the illness on the NHS. As a result of this, Eleanor has never been referred to a consultant and she cannot be prescribed any drugs other than basic painkillers.

She is angry at the government for not providing more funding for ME research.

“I’ve been writing to my MP for the past six years to no avail. I’ve given up.”

Eleanor noted that there are great similarities between the symptoms of ME and MS, yet the difference in research funding between the two is vast.

The full article can be found here.



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