Wednesday, November 4, 2009

Just tired - or chronically exhausted?

From today's Irish Independent

Are you really, really tired? It's not all in your head. . .
Often dismissed as hypochondriacs, ME sufferers have been vindicated by science, says Susan Daly

Tiredness is a common complaint in the modern world. Shift work, long commutes, offices shut away from natural light, hectic social lives: all of these factors can wreak havoc on our energy levels.

But what if the exhaustion becomes so severe that it stops you from looking after your children, going to work -- or even getting out of bed?

For decades, the medical world has wrestled with the idea of defining such extreme fatigue, along with a host of other debilitating symptoms such as muscle pain, digestive problems and inability to concentrate, as a real disorder.

In Europe, we refer to it loosely as ME (Myalgic Encephalomyelitis); in the States they use an umbrella term called CFS (Chronic Fatigue Syndrome).

Yet there has been bitter debate and division between sufferers, the sometimes disbelieving 'healthy' public and doctors on the symptoms and causes of such a syndrome -- or if indeed it really exists as a purely physical condition.

As sufferer Marie Coffey explains, ME feels like one is constantly living with an excruciating hangover and it can be difficult for people to take it seriously as a physical ailment.

There was some excitement then last week when Science journal published a study that seemed to establish a link between ME/CFS sufferers and a recently discovered virus called XMRV.

"Since the original Science paper was submitted, we have continued to refine our test for XMRV and have surprisingly found that 95pc ME/CFS samples tested positive for XMRV antibodies in the plasma," said Dr Judy Mikovits, who led the research at the Whittemore Peterson Institute (WPI) in the University of Nevada, Reno.

"This finding clearly points to the retrovirus as a significant contributing factor in this illness," she added.

Tentative though the findings are, they seem a vindication of what sufferers have been saying all along: it's not all in our minds.

Because of the difficulty of diagnosing someone with ME, and the reluctance to see it as a definite syndrome anyway, there has been a tendency to dismiss sufferers as hypochondriacs.

In fact, when Dr Daniel Peterson of the WPI started a practice in Nevada in the 1980s and began diagnosing a large number of patients coming down with a new type of chronic fatigue illness, the media derogatively tagged it 'yuppie flu'.

The implication was that it was a type of psychological burnout particular to the social circumstances of Dr Peterson's affluent patients in the Lake Tahoe area.

This was incorrect, as the illness was being documented across lots of other areas, but it stuck for several reasons, some of which were to do with the health insurance industry in the US who didn't like the idea of categorising a new illness that they would have to pay out for.

Declan Carroll of the Irish ME Trust explains that the symptoms being diagnosed by Dr Peterson were not actually new to Europeans who had been loosely coining the term ME since a study in a London hospital in the 1950s.

A population study taken by a Prof Leonard Jason in the US of figures for CFS worldwide concluded that it affects a mean of 0.3pc of the population. In Ireland, that figure translates to around 12,000 people.

Questionnaires submitted to Irish GPs by the Irish ME Trust came up with a similar number, although the Trust admits that this is not conclusive.

"Basically what the uncovering of this new virus has done is to further demand a proper diagnostic approach," says Declan Carroll.

The best way forward for ME sufferers here -- at least to diagnose them -- is for doctors to apply Canadian guidelines which set out a number of fixed criteria for diagnosing the illness.

"What happens fairly regularly," says Declan Carroll, "is doctors are busy, they can't see anything untoward in regular blood tests, and they pass the patient onto a consultant that deals with the prevalent symptom, say a person with muscle pain gets sent to a rheumatologist.

"Otherwise they take the view: you have muscle pain, you're tired all the time, it may be burnout, stress, so go exercise and I'll give you an antidepressant. And that is not really satisfactory."

The Irish ME Trust is an information and support service for ME sufferers. See for more details, or lo-call 1890 200 912.

'Let me get better, I thought, or let me go, because this is hell'
MARIE COFFEY (47) lives in Enniscorthy, Co Wexford. She began experiencing ME when she was just 31.

"I had been suffering from chest problems and some bad colds but I just collapsed one day in a friend's house in April 1993. I spent two full years in bed. I couldn't walk, I couldn't move, it was hell.

"My husband Tom had to carry me to the bathroom, and the doctors were telling me to exercise.

"I had been a very active person, I worked, I had two children. Dominic was six and Christina was eight. My son wouldn't remember me as a healthy mammy running around the place. I knew it wasn't psychological. I was pulling my hair out listening to doctors saying, 'Ah Marie, you just have to get up'. I did try but it got to the stage where I couldn't hold a cup.

"I never considered suicide but at one point I did ask God to take me if this was what it was going to be. Let me get better, I thought, or let me go because this is hell. My own mother dismissed me. I remember her looking at me one day and saying: 'Marie, you can't be that bad'.

"I'm still recovering -- it's baby steps. I like to say that ME doesn't manage Marie, Marie manages the ME! I speak to people on the phone, trying to help them go through it. I tell them to listen to their body, and I would beg doctors to listen to their patients.

"My son was a great man with the football -- I used to sit in my car watching him but other days I would be in bed crying because I couldn't go see him. I missed weddings. I missed my mother's funeral. We weren't close but I would have liked to have gone.

"I know now to give the body time to recharge. I meditate, I do stretches and yoga and I practise Emotional Freedom Therapy, which is like acupuncture without needles.

"When you first wake up you can be in burning pain. There is no doubt in my mind it's a virus -- your lymph nodes swell up, you're continuously dehydrated. You feel out of this world, they call it a 'brain fog', like your body has been invaded from outer space.

"I don't think ME should be fobbed off as a psychological problem. I have learned to be assertive and if a doctor doesn't listen to me today I just walk out.

"But I'm a firm believer that if the spirit is good, the body can recover. I have a grandson who is a wonderful boy of seven months. I can't hold him but I can still love him. It was a rough journey but I am thankful for where I am now."

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