Tuesday, 12 May 2015

12 May: ME Awareness Day; and people who think they are made of glass (updated 17 May)

Today, 12 May, is ME Awareness Day. I have nothing new to say, nothing that I haven't said a million times before. My friend Catherine has written a brilliant post for mumsnet blog about life with ME, I urge you to read this if you want to understand more.

I also want to thank the ME Association for all they do for us.

Yesterday, I came across an article about people who think they are made of glass, it fascinated me, this exceedingly rare mental illness. I imagined 'glass delusion' sufferers - almost mythical, fairytale creatures - perhaps being prescribed CBT (cognitive behavioural therapy) and graded exercise (GET). I thought of them protesting: But we can't do graded exercise, our legs will break! I thought of them being told, your legs won't break, there's nothing wrong with you, it's in your head that you're made of glass. In the case of believing you are made of glass, this would indeed be true, that it's in your head. In the case of the neuroimmune illness ME, our legs do indeed break when we are *forced* to do exercise. Our muscles cannot cope and we might as well be made of glass, so fragile do we feel. But the PACE brigade continue to support the insupportable theory that ME is perpetuated by false illness beliefs. GET and CBT as a primary treatment for sufferers of ME is a grotesque fairytale, the PACE trial, an evil stepmother.

***Update 17 May: Have just listened to 'The Glass Delusion' programme on Radio 4, v interesting, though tainted somewhat by the appearance approx 20 mins in of  Prof Edward Shorter, a medical historian in Toronto, who has been in the past extremely hostile towards ME sufferers. He wrote this article in February in response to the USA's Institute of Medicine proposing new criteria for and naming - Systemic Exercise Intolerance Disease (SEID) - of  CFS. He seems to have edited the original article to make it slightly less unpalatable.  I see Shorter is actually mentioned in the original BBC article I posted above, but I didn't notice, is very far down, near end. This is what comes of not reading the whole article...seems anyway that my blog post was prescient. Also, good to see Dr Enlander challenge Shorter when his nasty article came out. 

Still, 'The Glass Delusion' is very worth listening to.  I liked the novelist's comment that Cinderella's slippers would be much less fascinating were they made of velvet.

1 comment:

Lesley said...

I listened to a podcast about the glass delusion today. Some very interesting analysis by Adam Philips about barriers and transparency and protecting oneself. You can find it on the BBC site.