gloves off (or why M.E. is real)

Disclaimer: I write this post with no apologies.

I am sick of apologising for being exhausted, for having a headache, for not being able to do anything. I am tired of being let down by the medical profession and people who I thought gave a damn. I have lived with ME and all its evil daughters (fibromyalgia, endometriosis, IBS, chronic migraine) for 20 years and I can tell you it is real, it does exist and it does not miraculously go away when you get out for a walk once in a while.

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That very English medical institution, The Lancet, announced the results of what it claims to be the “biggest ever study” of treatments for Myalgic Encephalomyelitis (ME) – more commonly (and rather inaccurately) known as Chronic Fatigue Syndrome. The results were (fanfare) that a mixture of CBT (Cognitive Behavioural Therapy – used to help us change negative thought patterns that affect the way we act) and GET (Graded Exercise Therapy – where the patient is encouraged to become gradually more active over a period of time) is the best way forward, that with these two simple steps we can move from a lifetime of ill health to becoming the sort of person who bounds out of bed at 6am and runs 10 miles.

Simple as that right?

Wrong. Let me count the ways.

I was 16 years old when I was first diagnosed with ME. Initially it was thought to be brought on by a particularly bad bout of glandular fever. Other theories abound – from crop spraying in the 1970s to the luck of the gene pool. Whatever the cause I have been plagued by a plethora of symptoms for the last two decades, symptoms that have made me, at various points in my life, give up on dreams, leave jobs and cancel more plans than I care to remember.

The BBC ran with this picture – a girl looking pale and wan, a little tired, maybe a touch of the vapours. All you need is some fresh air. They listed the symptoms thus:-

“severe tiredness, poor concentration and memory, muscle and joint pain and disturbed sleep”

That doesn’t even come close.

Sometimes every day feels as though you are battling through a sea of jam, your memory is so bad that you have forgotten what you want to Google before your fingers hit the keyboard, there isn’t a part of your body that doesn’t ache so wildly that even prescription painkillers don’t touch the sides and while you can quite happily fall asleep in your dinner it’s very rare that you actually sleep at night.

This new study proves nothing that wasn’t known already. ME is an illness with wildly disparate symptoms and a cause completely unknown, and as such it is unlikely that a “cure” will ever be found that works for everyone. Different strokes for different folks.

The Lancet may claim that this new PACE study is the largest but at only 641 participants I would say it pales into insignificance in the light of the study by Action for ME in 2008 in which over 2000 sufferers were questioned. The Guardian ) did run the results of that study alongside the PACE study results. As you can see the most worrying thing about that study being that 34% of people with ME found their symptoms worsened after GET.

I am one of those people. I have spent many years and gone through many doctors trying to feel better. In 20 years I have only found one sympathetic medical person and these days I use my own knowledge of yoga therapy, pilates based movement practice, nutrition and mediation to help me through the bad days. Several years ago, before I knew all the things about exercise, nutrition and movement that I know now, I was put on a Graded Exercise Therapy programme. My symptoms got rapidly worse in a matter of days.

CBT helped hugely. But it didn’t cure me, it just helped me cope. It doesn’t take away the problem, it just gives you the tools to deal with it. I spent three years in my mid-twenties completely free of symptoms, only to find them return once I started working full-time again. It’s all about finding what works for you. There is a very thin line between gentle exercise and doing too much.

I am one of the lucky ones. My ME has never rendered me bedridden or in a wheelchair like some people I know. I have pretty much always been able to work. In some ways I have always thought being diagnosed at such a young age was a blessing. Yes it meant I never did the degree I’d dreamed of since I was 6 years old but it also meant I didn’t have to completely change my life halfway through. I have known people with amazing careers completely crash and burn and lose everything – job, spouse, friends – for this sickness.

There are many people with ME and related issues who cannot work, who cannot run their own businesses, who do not have a Himself to look after them. All this study has done is to reignite the flame of belief that ME is the Malingerer’s Disease. That there is nothing wrong with us and we just need a bit of fresh air and exercise.

I don’t know what is to be done. I don’t know if ME will ever be considered with the seriousness it deserves. But the cynic in me cannot help noticing that the PACE survey was partly funded by the Department for Health – just at the time the government wants to cut Incapacity Benefits and get the malingerers back to work.

Ultimately all these numbers are nothing but statistics and statistics can be presented to show any conclusion you want. I used to know a statistician who told me that with the right statistics presented in a certain way you could “prove” that 90% of the British population believes the moon to be made of green cheese.

Far more important than any of this to me is this quote from the Guardian article:

“Doctors involved in the new trial say they are looking only at treating the symptoms, not the cause.”

And that right there readers is everything that I believe is wrong with Western medicine.

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Footnote: I haven’t gone into the non-conventional treatments and lifestyle changes that have helped me over the years but if anyone is interested in knowing more about that do let me know.

This entry was posted on Friday, February 18th, 2011 at 8:47 pm and is filed under ME, health. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.