Tired of all this miserable ME stuff

The cynics call it yuppie flu, the long-term sufferers peddle doom and gloom. But you can have chronic fatigue syndrome and recover to see it as a normal illness
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The Independent Online
Aaargh. Not another moaning article about ME. The Royal College of Physicians, Psychiatrists and General Practitioners produced a report this week about chronic fatigue syndrome (unhelpfully called ME or yuppie flu) showing that 1-2.5 per cent of the population are affected by it. And, as always, a report on chronic fatigue syndrome (CFS) acts as cue for another round of depressing arguments in the papers and on TV.

If it isn't some cynic sneering at "yuppie" malingerers, it's the dismal story of a sufferer condemned to year after dreary year of inactivity. But don't worry. I promise the next 1,000 words will be a drone-free zone.

Here's some good news. Lots of people get CFS for months or for years, and they get better. And I mean properly better, not just well enough to drag themselves to work four days a week, or well enough to sit quietly in a corner at a party before catching an early bus home. They (or should I say we, for I confess I was once a sufferer) recover enough to be as bouncy and as boisterous as ever we were before we got ill.

The trouble is we rarely get a word in edgeways. To one side of us the long-time persistent sufferers, their friends and their relatives, suggest we didn't really have CFS at all. The other - the "it's all in the mind" lobby - claim our recovery shows the illness was just stress or emotional trauma that passed once we pulled ourselves together.

Desperate to leave all the limpness, and the fuzzy-headedness far behind and get on with our lives we never mention CFS again. After all, people will think we are bonkers, unstable, susceptible to relapse - or just deeply boring. The result is that the cynics and the chronics hog the airways.

So it's time to correct the balance. I was sent to see a specialist in chronic fatigue syndrome, Dr William Weir, a consultant physician at the Royal Free and Coppett's Wood Hospital in north London. According to Dr Weir, 80-90 per cent of people who get chronic fatigue syndrome recover within two years. Even those who remain ill for a long time still have a chance of making a full recovery. As Dr Weir points out, "I've seen people who've recovered after 10, 15 or even in one case 17 years."

In my case, the suffocating fatigue took three years finally to lift. Admittedly the first year was grim: nothing but Richard and Judy, the rollicks of Ramsey Street and trashy magazines to fill my days. I couldn't walk as far as the tube station without crumbling from exhaustion, nor concentrate on anything more complicated than Mills and Boon. After 12 months, as I started to recover and began working part time, my strength slowly grew. After two years, I returned tentatively to full-time work, although for a while I was unusually susceptible to colds and flu.

Now I climb mountains, canoe rivers, swim regularly, and work long hours without even thinking about my health. Friends who found me a calm and soothing presence while I was too exhausted and spacey to communicate much are once again exasperated by my lively, stroppy behaviour.

Am I cruising for a relapse? I don't think so. My father suffered from something similar - his lasted about a year - 30 years ago. Whatever it was, it never returned.

Nor was my illness, as the cynics would like to suggest, merely a temporary mental aberration. If I was bonkers then, I am still bonkers now in my rude good health. Nothing has changed in my emotional state or my outlook on the world. I suffered no trauma, no unusual stress, and I wasn't depressed. At least I wasn't until I'd been ill for several months, when the full horror of incarceration with daytime television became clear. Misery took hold, I swallowed a few Prozac, and misery went away again. But I was still ill.

In fact the evidence that chronic fatigue syndrome is completely distinct from depression is overwhelming. The brain scans of CFS sufferers and the depressed display very different patterns. Dr Weir believes that sooner or later scientists will discover a single common denominator for all cases of chronic fatigue syndrome, whether it lasts six months or six years: "It may well be a very common virus that affects lots of people, but doesn't cause illness in most of us."

The trouble is that until that virus - or whatever it is - is identified, people with CFS will continue to be told that their problems are psychological, and blamed for their inability to leap up and recover.

Faced with a sceptical public, and a media caricature of the illness as yuppie 'flu, the reaction from ME support groups is perhaps understandable. To convince us the illness is real and awful they provide us with gloomy case studies of people confined to their houses for years. Dealing predominantly with those who have not recovered, they tell us the prognosis for CFS is terrible. And they bemoan the lack of sympathy they receive from the medical profession and the outside world.

Unfortunately such gloom-mongering is counter-productive. A potentially sympathetic audience is turned off by the portrayal of CFS sufferers as victims. What starts as pity for their terrible plight turns quickly to contempt and boredom.

More important, sufferers are made to feel even worse by the overwhelming impression that they have no hope of recovering. The most dispiriting thing I did when I first fell ill was open a self-help book on ME. Within three pages, I was convinced my illness would last forever. Luckily, I had doctors and family who treated CFS as an ordinary, if unpleasant, illness, from which I would naturally recover.

I don't feel like a victim for having had chronic fatigue syndrome. I never did at the time either. Infuriatingly for others, I actually feel quite proud of the fact that I endured an extremely boring and frustrating few years without going completely crazy.

Nor, sadly, can I say with my hand on my heart that I became a better person because of CFS. For a few months when I first got back to health I rejoiced in silly things like riding a bike, I enjoyed the world, and I felt great empathy with the elderly, the heavily pregnant, the disabled, and anyone who had trouble moving fast. Now I tend to take everything for granted again - just like everyone else.

I feel normal again. We should start treating CFS as a normal illness.

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