Friday 29 July 2011

I am too tired to send CFS researchers death threats

It's an odd experience, having Radio 4 as your alarm clock. You wake up gently, with James Naughtie's mellifluous tones creeping into your ears, the news of the day quietly infiltrating your dreams. Which means that I'm never entirely sure whether the odder stories are entirely true or just the product of my crazed dream state. Super-antibody fights off flu: probably true. Queen Mother in fact a Time Lord and regenerated as Kate Middleton: probably not true.

People with Chronic Fatigue Syndrome sending death threats to researchers working in the field? Weirdly, true.

As far as I can tell (I have checked this while actually awake), the people in question are angry at any suggestion that the syndrome might be caused by psychological or psychiatric factors. Which I understand, up to a point: having fought with a series of doctors who dismissed me as a malingering hypochondriac (Dr Dickface McBullyo being the worst of a rubbish bunch), who took one look at my medical history and chalked every ailment down to Depression'n'Anxiety, I get the frustration of trying to make people understand that this is a real physical problem that is really limiting your options in life.

I guess the problem is that people think that "psychological" equals "all in your head" equals "not a real thing". Which says a lot about how seriously we take mental illness.

Everything is interconnected. Stress can exacerbate heart disease. Exercise can make you happier. Imagining The Mind as an ethereal entity which floats around without interacting with the physical body at all is, from a medical point of view, bollocks: how else could taking a pill change your mood?

The people protesting are concerned that all government funding is going into researching possible psychological causes of CFS/ME, rather than searching for a virus. (Some of the claims are just bizarre: Professor Myra McClure was accused of having a vested interest in not finding this virus, which, given that she's a virologist, is... yeah.) Which is a valid point: given that there's no hard evidence pointing either to a purely physical or purely psychological cause, it would make sense for funding to be split equally between the two.

I'm not fussed, personally - and I doubt many people with CFS are. Whether psychological, biological, or some mix of the two, any and all research is welcome because the more we know about it the better the prospects of alleviation or cure. If the One True Cause does turn out to be psychological, at least I can then get to work on tackling it.

I suppose the insistence on a purely physical cause could be seen as pragmatic, in a way: not the death threats, which never really improve one's public image, but the attempt to distance CFS from mental illness. Purely because our society really doesn't take mental illness seriously, so the headline CHRONIC FATIGUE CAUSED BY CRAZINESS would be read by many as CHRONIC FATIGUE NOT ACTUALLY REAL - JUST HYPOCHONDRIA. Pragmatic, maybe, but not helpful; it's just joining in the pile-on. "We're ill, we're not crazy, not like those people over there."

Or, in the immortal (and probably misquoted) words of Dumbledore: "Of course it's inside your head, but why should that mean it's not real?"

4 comments:

  1. <333 Have I mentioned that your comments bring massive joy to my life? Well, your comments bring massive joy to my life.

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  2. Being Friday afternoon, I'm not sure if this comment is related to the above, but whatever: Isn't is funny how probably every unusual physical happening can be attributed to stress and/or anxiety? "I am tired. Oh, stress! Headache - stress. Backache - yep, stress. Dodgy tummy/bowel - yep, that's a stress thing, Google says so. Hungry? Not hungry? Yeah, them too." And now: dry skin! I have some dry skin, I had a little giggle and pondered whether it went along with all the other stress-symptoms this week... internet says yes!

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  3. Maybe we should all swallow the Little Book of Calm a la Black Books...

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