From the Daily Mail, 28 January 2010 (by Daily Mail columnist Martin Samuel)
The day she was diagnosed with ME, Lynn Gilderdale would not have felt doomed. She would not have believed it to be a death sentence. She would not even have imagined the dreadful excuse for a young life that lay ahead. She would, with tragic irony, probably have been happy. Her family would, too.
She would have welcomed confirmation of the illness because, on diagnosis, the initial feeling is relief. Relief that finally there is a name for what is wrong with you; relief that there is at last an end to those dreadful, debilitating, demoralising trips to the GP which are met with little more than well-intentioned bafflement.
Diagnosis represents a conclusion to those random referrals to specialists who are valued experts in illnesses that are not yours; consultations that promise hope but lead only down blind alleys.
Diagnosis at last lifts the demeaning suspicion that, deep down, everyone thinks you are mad, or acting up, or delusional. That you could feel better if you really wanted to. That it is all in your mind.
You may suspect personal experience here, and you would be right. My wife, Deborah, has ME. Not like Lynn Gilderdale had it. There was a ferociousness in Lynn’s symptoms, as recalled by her mother, Kay, that would be unrecognisable even to many sufferers, but few ME cases present alike.
Deborah never lost the will to live, but her illness was serious enough to be life-changing and to be diagnosed and treated by a specialist. I remember the day he did that. I was working at Cheltenham races and she phoned to tell me. We were so happy.
Imagine undergoing every test and finding nothing conclusive until you are at your wits’ end. Imagine a day when your GP, a thoroughly decent man, says: ‘Unless you’ve got any ideas, Mrs Samuel, I really don’t know what to do.’
And then, by luck, an article in a newspaper gives you just an inkling of what is wrong. You find a specialist doctor and get a diagnosis. Imagine being on a waiting list for months, being told you have a chronic, incurable disease and wanting to punch the air with joy that your problem now has a name, a method of treatment and a doctor who doesn’t think you’re just a bit low and your symptoms are psychosomatic. That is how it feels to be diagnosed with ME.
So, of course, there is a mental side to the illness, as the sceptical suggest. If you feel sick and tired every day, it gets you down. If you do not know why, it makes you miserable. If you think nobody believes you, it makes you sad. That is an effect, though, not the cause.
The cause is myalgic encephalomyelitis, and it is a neurological illness, believed to be triggered by viral ailments affecting the brain stem. That is why it presents differently from case to case, that is why it kicks up old infections: such as chickenpox.
And because conventional medicine shunned ME sufferers for so long, it is what leaves them open to quack alternative practitioners, furthering the falsehood that it is some bogus ailment, the preserve of people with too much time on their hands: the yuppie flu of popular myth. And it’s called ME.
ME. Get it? They are all self-obsessed, these people. They just need to get over it. Incredible, really, that the perception of a disease should be governed by its abbreviated form. That was Lynn Gilderdale’s problem: damned by acronym.
The fact is, some people do recover better than others; some people can roll with it. Deborah’s ME has never been as serious as Lynn Gilderdale’s. It is manageable. Who knows why? No two sufferers will have the same symptoms, so every plan of action is different, too.
Deborah’s doctor recommended a yoga class to help blood flow to the brain. She used to wrap up warm because the hall was cold. There was another patient there who would attend in a T-shirt and sandals because she felt hot constantly, even in mid-winter.
Some think it helps to set goals; others believe targets are dangerous. The fact is, we don’t know.
Certain aspects of the illness can be approached from a psychological perspective because if you feel unwell all the time, if you are by necessity forced into constant evaluation of your physical health, you are going to be depressed; but that does not make it a disease of the mind.
If the death of Lynn Gilderdale, and the crass court ordeal of her mother, achieves one positive, it is that in the past few days, there has been genuine sympathy towards ME sufferers, not the usual outpouring of halfbaked, spiteful, theories. And Lynn donated her body to ME research in the hope it would offer some clues. Like that first happy day of diagnosis, it is not much: but it is a start.