Saturday, January 09, 2010

ME and me, and the Daily Mail

The Daily Mail upsets people. A lot of people. It's a rubbish newspaper, so I never read it. However, last week it upset people with ME because of its online poll, asking, "Do you think ME is a genuine illness?" So far, most people have voted yes. This was after they published a report headed, "British experts say ME virus is a myth," which was widely interpreted as suggesting that ME is a myth. ME/CFS sufferers got very indignant.

The basis of the Mail's story was the news that British researchers had failed to replicate the results of some hastily published research in the US that appeared to link ME with a retrovirus called XMRV. There were some premature claims that this might mean a "cure" was possible, and some ME patients started pestering their doctors for antiviral drugs, in the expectation that they'd get better.

Trouble is, few people understand ME, let along the science being reported in sensational terms in the newspapers. There are a number of conditions that are poorly understood, including Multiple Sclerosis and other diseases of the central nervous system. Although the World Health Organisation has classified ME as a neurological condition, a British committee at NICE (the National Institute for Health and Clinical Excellence) haven't agreed to accept this, as some of them say that there isn't sufficient evidence for the cause of ME to say that this is true. The campaigning organisations for ME patients have been cross about this, especially as there's a body of opinion that ME is psychosomatic. I don't believe that's NICE's position and suspect that their caution is justified. It's likely that ME is neurological but, so far, it's been hard to prove. There's certainly no agreement that it's caused by a virus though, again, this is likely.

So, on the one hand you have ignoramuses like the Daily Mail journalists (I use the term loosely), and on the other hand you have thousands of ME patients who are desperate for something, anything, to offer them hope that they can get well. Some do get well, or much better than they were, without any special treatment, just a sensible health management system, like my friend's daughter. She was ill at school, took things easy through her A levels, graduated from university despite catching meningitis, and is now happily married and working full-time. She has to eat sensibly and get enough rest, but she's much better than she was. I, on the other hand, have got steadily worse, but our circumstances (and ages) have been very different.

It saddens me that so many ME patients waste an awful lot of money and energy searching for effective treatment. One of the problems with a poorly understood condition is that there are always quacks, some very impressive ones, offering hope. I've heard of people spending tens of £thousands, making themselves more ill in the process. The only thing that gets better is the quack's bank balance. One was overheard laughing about his gullible ME "clients", saying it was easy money. He probably read the Daily Mail.

One of my online friends with ME/CFS has blogged about the Daily Mail and the suggestion that the illness isn't real, and I've commented on her blog. My apologies to those of you who've read my previous post about it, but here's what I wrote:

Everyone with ME/CFS seems to suffer a different set of symptoms, or some different ones. I know a lot complain of pain, but that's not one of my problems, fortunately, as I have enough pain from arthritis in my spine.
Most of the time I try to ignore my ME. Of course I'm conscious of my limitations, but I don't actually spend much time thinking about it or worrying about it. I don't spend any time at all looking for a cure or treatment, as I'm pretty sure that's a waste of time. It's easier (for me) to just take each day as it comes and avoid situations that I know will exacerbate my problems. There are, of course, occasions when you know that doing something will inevitably make you feel like shit for days afterwards, but if they're worth doing, I'll still do them.

I don't much care whether other people think that ME isn't real either. The people who really know me, the ones who love me, they know what's real. I've refused well-meant offers of "help", such as suggestions about various forms of quack therapy, and been accused of not wanting to get well. I really can't be bothered explaining myself in those situations.

My history (the potted version) started 23½ years ago, at about the same time that I had bleeding from a nipple. 2½ years later, I was diagnosed with ME and breast cancer, after several hospital consultations. A young hospital doctor asked me if I thought there was any connection. I said I thought that the only one was likely to be that my immune system had a lot to cope with. If the cancer hadn't been slow-growing, I'd have been dead before they got around to working out what was wrong. It showed up on a mammogram ordered by a consultant who probably thought it would shut me up to find there was nothing there.

I was working as a supply teacher when I became ill. Ironically, I often covered for a teacher who was frequently absent with ME. It's been prevalent in schools, among staff and students. After a few months, I found that I couldn't walk the length of a school corridor without clutching at something for support. I was so unsteady on my feet that I wouldn't have blamed some kids for thinking I was drunk. Then there were mornings when I started to drive to a school, only to have to turn around and come home, I felt so ill. The jelly legs have continued to this day.

I had to give up teaching, since my health was so unreliable. Because I was a supply teacher, I didn't get any sick pay or a pension, so it was difficult, especially as I was a single mother. Eventually, with my GP's permission (he said he thought a limited amount of work would be good for me or I'd get bored, then depressed), I started doing some freelance work from home. I started doing funerals too. At one stage, they became so popular that the workload was making me more ill, but I trained more people and handed over the work to them.

I've had to have surgery several times over the last 23½ years; two operations for the cancer, one major operation for a prolapse, and another to pin a broken ankle (I fainted after a few days with a stomach bug and woke up under the kitchen table). They tried to do two of them using regional anaesthetics, because of my ME and heart problems, but they didn't work, so I've had four general anaesthetics and each one has set me back considerably. After the last one, the physiotherapists at the hospital didn't understand why I couldn't stand, let alone walk, while I was recovering. They expected me to use crutches. I couldn't.

I do use a whole battery of aids though - a Motability car (used less frequently these days), a mobility scooter, a wheelchair (when there's someone to push it), a stairlift, an electric bed, a board over the bath so I can shower (I can't get in or out of the bath), a walker I use around the garden, walking sticks (different colours for different occasions), and various other small tools. Now that I'm not working much, I have more energy to cook, instead of relying on deliveries of ready meals. That helps now that I'm aiming to lose 4 stone, so my poor tired body has less weight to carry.

On bad days, I sometimes cry from frustration. I swear a lot. But most of all, I'm glad to still be here, and I'm trying to do more reading and painting while I can, because I'm losing my sight with macular degeneration. Within the next few years, I'll have to give up the car. Living in the country, that won't be easy. Ho hum. Shit happens.

The Daily Mail prints such a lot of rot, why should we be surprised that it suggests we're imagining all this? Sod them.

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