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.

Monday, 30 March 2015

Michael Wolf's 'bastard chairs'

I love this project bastard chairs by German photographer Michael Wolf. I want to sit on them all (I am always looking for somewhere to sit and wish there were more benches, though Edinburgh is not too bad).

Wednesday, 25 March 2015

Didn't expect to see ME mentioned in Neel Mukherjee's novel

Am enjoying Neel Mukherjee's 2010 novel A Life Apart - a novel within a novel -  and was surprised to come across this observation from the main character Ritwik Ghosh, a student from Calcutta studying English Lit at Oxford in 80s/90s:
 'And then there is the steady rise of illnesses Ritwik's never heard of - glandular fever and ME, chronic fatigue syndrome and RSI. God, these are the very people who take a  dozen jabs before they go to India and carry a whole pharmacy with them! At least you get nothing more serious than diarrhoea or worms out there but here you get incurable, unheard of things such as BSE and CFS and ME, the acronyms themselves trying to hide the dreaded nature of the new-fangled confections.'
It's not often you come across references to ME in fiction. Ritwik has had an impoverished, traumatic childhood in Calcutta, at the hands of a violent mother - those passages are hard to read - and the point here is that these new 'British' illnesses scare him - in a way, India is safer.  

I would  like Ritwik to read The State of Me,  though it was not yet written then, but Helen Fleet,  also an English Lit student in eighties, was of course already ill with ME.

I also love this paragraph:
'These presences and shadows scare him sometimes. He has taken to sitting with his back firmly pressed to the corner where two walls meet at right angles. He has become like a cat: at least two sides are covered and nothing can startle him from behind. Whatever encounter there is in store for him will be face to face; he's prepared for it, ready to look it in the eye.'

Heartbreaking, he has become like a cat.

How I love novels.

Tuesday, 10 March 2015

Sliding down Mt Everest

This is utterly gorgeous footage of the Himalayas. Made me think of both my dad and my stepdad. In the seventies, we visited Murree Hill Station - in the Himalayan foothills -  with my dad's family in Pakistan, after his death. And a couple of years ago, my step dad had taken to telling us that he had climbed Mount Everest in a day and slid all the way down. He was very well travelled, but we are sure this didn't happen. We got used to his false memories and stopped contradicting him, it was more gentle just to listen.

Thursday, 19 February 2015

It's hard to be original about grief

It's very hard to be original about grief; it's a time to be got through, that is all. Today, I find it hard to believe that I lost my beloved stepfather two weeks ago. After the phone call, the immediate minutes, hours, days passed in a blur. I veered between wailing and relief for the first week. He was 85 years old and had been spiralling further into severe (vascular) dementia, but we did not know he was so poorly, we thought we had him for a good while longer. He died peacefully in his sleep, but his passing was a shock, especially for my mother. He will be spared the indignity of not knowing who he is, not knowing who we are, and so will we. But he has left a huge gap, he was a wonderful man, the kindest man I knew. I was lucky to have him for my stepdad for thirty-eight years. A few weeks ago, I had underlined and tweeted a quote from Damon Galgut's In a Strange Room: 'In every departure, deep down and tiny, like a black seed, there is the fear of death.' I could not have known then I would not see my stepdad again.

The day before he died, he was sitting up in bed eating trifle and reading one of his many Greenland books. When, a few days later, my brother and I accompanied my mother to register the death, the registrar asked us what my stepfather's father's occupation had been, we answered, the governor of western Greenland. The registrar half-smiled as she typed and said, I've never heard that one before. We smiled too and the sun shone and we glimpsed a time when the ache of not having him will have given way to gorgeous memories. Meanwhile, we wait.

Monday, 26 January 2015

The pantomime of PACE

More nonsense from the PACE trial/biopsychosocial gang in mid-January. The BMJ and the Lancet and the Telegraph and the Times and the Guardian and the Independent and the BBC and god knows where else reported with varying degrees of ignorance and insult that people with ME were exercise phobic, as insulting a red rag as you can get. And they wonder why people with my illness feel hostile towards such  'research'. It's a fucking pantomime. The BMJ did not at first post my comment but a week later, it has appeared. You can see the other rapid responses too, though the fact it took them a week to put mine up is not exactly rapid (and my comment should read biomedical research consistently *ignored*, ignored is missing). Lots of great comments from doctors and patients and charities. We all keep saying there is a wind of change, that this idiocy has been stamped out, finally, and then they pull another mendacious rabbit out of the bag. Professor Trudie Chalder, one of the lead actors in the pantomime - but not the only one in a tightly-knit clique of offenders - has been gloriously satirised here, described as having an advanced degree in rocket science from the church of behave therapy. That sounds about right, considering the nonsense she comes out with. I was also amused to discover that chalder is an old Scots word for a measurement of grain. The possibilities are endless.

Monday, 29 December 2014

Carlos Acosta on BBC4

With television so dumbed down and dispiriting, was a joy to come across Carlos Acosta on Boxing Day night. My favourite dance was this piece, 'Derrumbe', about a marriage ending. The female dancer is Pieter Symonds. She is mesmerising. The music is spellbinding too. The whole BBC4 programme is available here for a while.