Monday, November 23, 2015

Calling Bullshit On This

(It's taken me a while to decide whether or not to post this; I guess I will, there are far more eloquent blogs out there but I wrote this on the day this ridiculous study came out, feeling frustrated, confused and angry. It's still smarting now, even though the results have been somewhat dismissed, so here we are:)

I am not an Oxford academic and to be frank, I am glad I am not.

What I do have, unfortunately, is an intimate knowledge of life with ME/CFS. So it's completely disheartening when articles like this surface and reinforce the prejudice that this illness is all in the head and can easily be resolved if we'd all just pull our collective socks up and get on with it.

As it stands research into the actual causes of ME/CFS is underfunded, the symptoms are under such a large umbrella that they're regularly misunderstood and there seems an almost deliberate reluctance in wishing to resolve these facts.  Instead sufferers are dealt with by medical staff sometimes impatient at having to listen to the litany of ailments and then there are the friends, family, public who think we're all malingering.

Before I had this I didn't know anyone with it, hadn't paid much attention to it at all. In a way the disheartening attitude towards it startled me. I'd had thyroid issues before and it was a quick diagnosis then on to treatment and back to normal life - sorted.  No one thought it an imaginary friend, or rather foe, as here were the tests, here were the results and this is our plan of action. This time at each and every hospital visit I expectantly waited for them to say "this is what you've got and here's how we'll cure you."  At each and every hospital visit I gave up 'nearly an armful' of blood in the hope that this time it would definitely be something curable by a magic pill.  Meanwhile my life before ebbed away.

Who would choose that? In all seriousness who would choose to have this damn illness, disease, syndrome or, if these damned 'professors' are to be believed, fiction? I've gone through the CBT that's meant to be a cure.  Yes, it helped me cope, allowed me to forgive myself over not being able to do what I wanted and taught me to pace so I could fit things in (including such mundane tasks such as laundry), including inevitable crashes when life is too busy. I learned to say no (although it is still a massive struggle).

The GET taught me I had limits and when I tried to stretch those limits, in my usual gungho manner, I suffered the consequences and unless you've had ME/CFS you might not know how terribly those consequences play out.  So, not going to do that again in a hurry. To say this is beneficial is actually quite dangerous as sufferers want to be well and will push themselves over those limits time and time again. I have yet to hear of a single person with ME/CFS who has found GET to be anything but frustrating and painful.

So according to the exalted professors I should now be fine and dandy.  Let's shut up shop, stop the poor attempt at finding cause/defining symptoms/cure. We can all go home.

'Tis yet another kick in the teeth. Front page news has established ME/CFS as 'not a real illness' in the minds of people now. Whenever someone has to explain why they are not as they used to be it will be all side-glances, cat bum mouths and dismissals over just how fucking bad this really, truly is and haven't you tried just, you know, not being ill.

No comments: