ME; the devastating mystery illness!

We felt a little like the England bowlers this morning. It was raining heavily when we arrived at the allotments and things went downhill from there. Some roofing had blown off during the night and creatures unknown had gained entry to our corn store. But life, as with cricket, is like that. Sometimes everything goes well, sometimes the opposite. With that in mind I was back at home by 11.00am to watch Sir Lanka resume their innings at Lords. England couldn’t possibly bowl as badly as yesterday. But they did!

But whatever the day’s fortunes, I always feel grateful for the things that I haven’t got. And top of the list is ME or, to use its medical title, Myalgic Encephalomyelitis. It is often the case that when the medical profession labels something ‘itis’ it is a clear indication that it hasn’t a clue as to cause or cure. In the case of ME it is even worse than that for there is a sizeable section of clinicians who deny its very existence despite the fact that sufferers are often weakened to the point of total exhaustion. One such once asked a friend if his walking stick was a psychological crutch. Tom answered that without it he would fall flat on his face.

I was reminded of all this when Yvette Cooper, the shadow home secretary, chose the Hay Festival to talk about her own nightmare. The illness – also known as Chronic Fatigue Syndrome – struck when she was 24 and working as a researcher for the late John Smith. She contracted flu one January and, in effect, it never went away. She recalls it as a horrible time; “I didn’t know when it would ever end. I couldn’t leave the house, I couldn’t even get out to buy a newspaper. All those things you take for granted like running for a bus were totally beyond me”.

Compared to some sufferers from ME, Yvette was fortunate in having an enlightened GP. Instead of ludicrously suggesting that the whole thing was simply in her mind, he said that he believed it was triggered by some sort of virus and treated her accordingly. But it was a very long and depressing experience. It was brave of her to open up publicly on this for right now there are many sufferers who are totally debilitated and endure advice about ‘pulling themselves together’. I know from my pal that there were periods when he could hardly pull the sheets on the bed!

It is estimated that at any one time the illness affects around 250,000 in Britain alone. It leaves then severely lacking in energy and struggling to recover, there being no agreed cure. I did once chair a large conference on the subject. I was struck by the brave determination of so many for whom simply getting there had been a huge achievement. Various doctors came along to lead the discussion and one particularly impressed me. She had suffered herself and was convinced that the answer lay in finding a beneficial regime of vitamins.

Other speakers included a top-class athlete who had been suddenly stricken down. One day she could run ten miles without pausing for breath, the next she needed help to climb the stairs. My lasting impression was of a condition that strikes at all ages and which takes away all hope. And at that time many GPs were dismissive of the what some then chose to call ‘yuppies disease’.

There is now an active ME association and much more clinical involvement in research and the provision of help. But the battle goes on for many and it is hard to imagine suffering from something that suddenly renders you bedridden and yet is claimed by some to be an invention.

It must have cheered many that Yvette Cooper, essentially a private person, decided to publicise her own ordeal. Knowing that we are not alone is the greatest comfort anyone suffering from anything can have.

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THOUGHTS FOR TODAY;  HOUSEWORK;   “I hate housework. You make the beds, you do the dishes, and six months later, you have to start all over again”…..Joan Rivers     “Cleaning your house while the kids are still growing is like shovelling the path before it stops snowing”……Phyllis Diller     “As far as I know, a single man has never vacuumed behind a couch”…..Rita Rudner    “I buried a lot of my ironing in the back yard”…..Phyllis Diller     “My second favourite household chore is ironing, my first being hitting my head on the top bunk bed until I faint”….Erma Bombeck     “I’m 18 years behind with my ironing. There’s no point in doing it now, it doesn’t fit anyone I know’…….Phyllis Diller   “I would like to marry a nice, domesticated homosexual guy who has a fetish for wiping down Formica and different vacuum cleaner attachments”……Jenny Eclair     “In painting a ceiling, a good rule of thumb is that there should be at least as much paint on the ceiling as on your hair”….P J O’Rourke    “Our terraced house was so small that the mice used to walk about on their back legs”…..Les Dawson   “A neighbour is someone who has just run out of something”……Robert Benchley   “I’m a wonderful housekeep. Every time I get divorced, I keep the house”….Zsa Zsa Gabor

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4 Responses to “ME; the devastating mystery illness!”

  • Angela Whitbread:

    Delighted to see someone writing about this. It is an applling experince and can drag on for years. Only now are doctors taking it seriously

  • Bill H:

    A friend has been laid low for almost two years with this. At one point he was too weak to lift his teacup. More research is desperately needed

  • MS Victim:

    Too many GPs work on the basis that if a drug company doesn’t offer a researched treatment a conditiion doesn’t exist and many made lives a total nightmare. I was told to take counselling…for two years I was too shatterd to get there.

  • Philip Barton:

    Self-help groups have helped by enabling me to meet other victims thus reassuring me that I was not imagining the exhaustion that had overtaken me.

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