Higher Education: Is there student life after ME?: Nick Holdsworth reports on post-viral fatigue syndrome, a debilitating disease that is increasing among undergraduates

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The Independent Online
Anne King, a history student at Leicester University, admits she is panicking about taking her finals this week. But unlike most other undergraduates who are in a last-minute flap, Anne's fears are about her health: will she be well enough to take all her exams or perform to the best of her abilities?

Anne, 21, has post-viral fatigue syndrome - also known as ME, or myalgic encephalomyelitis - a disabling condition with no single known cause and no cure, which currently affects more than 150,000 people in Britain - a third of them under the age of 25. The first international conference on the disease began in Dublin yesterday.

The number of students, particularly young women, with ME appears to be increasing. Last week the National Union of Students supported the first International ME Awareness Day at campuses throughout the country. The aim of the day, organised by the charity Action for ME, was to raise the level of awareness about a disease with a bewildering array of symptoms, intermittent effects and no single diagnosis.

Campaigners sum up how it feels to have ME as: like having flu, plus a hangover, plus just having run five miles.

Sufferers report symptoms that include muscle fatigue, pain and exhaustion, difficulties with concentration, memory and speech, plus nausea and digestive problems. The simplest tasks can leave people feeling debilitated for days and only 20 per cent of sufferers regain full health. The rest have to learn to manage their illness and lead much reduced lives. Some sufferers become permanently disabled, their lives blighted by a disease now recognised by the Department of Health but for which virtually no research grants exist.

The pressures and pace of student life - studying, socialising, meeting deadlines and cramming for exams - takes its toll on the healthiest of young bodies and minds, but ME strikes at the core of sufferers' ability to work, revise and demonstrate their competence in exams.

Anne is worried that the exhaustion she suffers will affect her exam performance, despite forecasts by her tutors that she is on track for a 2:1. 'I've managed to keep up with my course so far this year because my department has been understanding about my attendance at lectures and essay deadlines. But I'm finding revising increasingly difficult.'

Anne, who was diagnosed last October after failing to recover fully from a viral infection she contracted in August, is fortunate that at Leicester she has the support of an ME self-help group run by other students suffering from the disease.

Jackie Griffin, an archaeology student who set up the group last year, has had ME for six years, although it was only diagnosed two years ago. With the help of the university's new Study Support Centre, she applied for a disabled students' allowance to buy a computer and dictaphone to enable her to work at home. The centre, set up last year with a Higher Education Funding Council grant, has been instrumental at Leicester in promoting understanding of ME.

Bethany Elphick, an English student at the university and an ME sufferer, took a year out, with the blessing of her department. She returned to university last autumn for her final year fully recovered.

Months spent at home resting and taking part-time art courses, followed by a couple of months with relatives in America, seemed to work where conventional and alternative medicines had failed. But Bethany knows she must still pace herself and not push herself beyond certain limits.

But by the time Alison Whale, an Oxford University linguist, realised she had pushed herself far beyond the limit of her body to cope with her illness, it was too late merely to take a year out in the hope of recovery. Alison, now 27, left Lady Margaret Hall five years ago after completing three years of her four-year French and German degree.

Initially she coped at Oxford by strictly limiting her social life, but when she became bored she plunged into the summer term's social whirl. Three weeks later she collapsed and was bedridden for a week. After that, university life was a laborious schedule of study and rest, supported by close friends and understanding staff. Doctors were less enlightened - repeatedly telling her that she was depressed or homesick and the remedy was to go out and enjoy herself, precisely the wrong advice for an ME sufferer.

Determined to complete her degree, Alison insisted on going to Alsace for her year as a French assistant in a small rural school. It was a disaster. Most of the time Alison was bedridden, and faced with dwindling sympathy and understanding from her French hosts. 'The school sent me to see a French psychiatrist. He told me I was not mentally ill and what I needed was a passionate love affair . . . I got out before he could offer to help.'

Alison was too ill to return to England alone - her parents drove out and took her home to Kenilworth, Warwickshire, lying on the back seat of the car. The university has kept her place open indefinitely, but she now doubts if she will ever return.

Alison's life today is one of almost total disability, her days spent lying on a sofa listening to tape-recorded books. Kept going by a strong Christian faith and belief that she will get better eventually, she is bitter about the failings of the medical profession: 'It's disgraceful that people suffering so much should be dismissed as depressed or hysterical just because doctors have no explanation for their symptoms.' Her advice to those with ME is to listen to their own bodies and not to push themselves.

'It's better to take three or six months off than get to the state I did. In the end your health is just so much more important and you could be saving yourself years of distress.'

Action for ME would like to see government funding for research into the disease, and official guidance for GPs. For a disease that afflicts twice as many people as multiple sclerosis - and three times as many in the 17-25 age group - this is action long overdue.

More information on ME can be obtained from: Action for ME Student Factsheet, PO Box 1302, Wells, Somerset BA5 2WE.

(Photograph omitted)

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