Sunday, 8 November 2015

The clamjamfry of the PACE trial

It's quite a clamjamfry in the world of ME research at the moment. The dodgiest-of-dodgy-trials aka as the Oxford PACE trial is having the life shaken out of it in the form of American health journalist and academic David Tuller. Tuller has recently and comprehensively demolished the trial over on Prof Vincent Racaniello's virology blog. And James C Coyne, professor of health psychology - and visiting professor at Stirling University - is weighing in too. The Americans have come to save us.

I often speak of the ME narrative being taken over by the CFS narrative in the nineties, and by chance I came across an ITN clip from 1996 - lovely Trevor McDonald informing us that ME was no longer known as ME, but now officially called CFS, and Simon Wessely (not yet knighted) telling us that longterm cases of disability had a psychological component. All interspersed with an exhausted woman telling us how very tired she was - no disrespect, but she apparently had (slow onset) chronic fatigue, not the actual neuroimmune illness ME. And glimpses of a shady-looking medical panel making this name change decision. So now we have actual visual proof of when the trajectory began: Ramsay-ME being buried by the psychiatry-led UK medical establishment. I'm so glad I didn't see this in 1996, the television screen would have been cursed to hell. (And given that the feisty consultant neurologist who diagnosed me in 1983/4 had also studied psychiatry at Harvard, you'd think he *might* just have picked up on any psychological component...)

But it has all come back to bite them on the bottom, as PACE is, of course, rubbish in so many ways. Conflating a complex, poorly understood neuroimmune illness with chronic fatigue was never going to work, was it? Apart from the methodological flaws/holes, what enrages me is that the scaffolding of PACE is that ME is perpetuated by false illness beliefs - even if virally triggered - and that changing how you think about your illness (CBT) and a wee graded jog (GET)  round the park will make you all better. No matter that many people with ME are reporting becoming *more* disabled after graded exercise therapy. Once mild or moderately ill, now bedridden. No matter that you can't fucking exercise because your head shuts down and your muscles burn and you become exhausted and weak as  soon as you remotely overdo it. There is mitochondrial dysfunction, that's why. But PACE makes no allowances for post-exertional malaise (PEM).

Anyway, in response to Tuller, Simon last week wrote a defence of PACE - full of rather dull nautical imagery - which was quickly satirised by Graham McPhee, a former maths teacher who had to retire ten years ago due to ME. In the meantime, while PACE implodes, there is great research afoot. At last month's research collaborative meeting in Newcastle, virologist Professor Montoya of Stanford apologised to the ME community and said it was his wish that all USA doctors would apologise to ME patients for the way they been treated (and what a pleasure it was to meet him briefly and shake his hand). The Norwegian government has already apologised, a shame that the UK neither has the impulse nor grace to do the same. Here is the summary of ongoing and new research presented in Newcastle written up on ME Association's site by Dr Charles Shepherd. And the USA's NIH has just pledged a massive injection to research.

My 14 year old nephew sent me the first draft of his short story assignment for school, I love reading both nephews' writing. I'm bemused by the arc of good versus evil - the Americans are all powerful and good, fighting evil terrorists who want to nuke the planet. Of course, in real life, there is much more grey, but as far as PACE is concerned I'm very glad we have the Americans on board. One can sense they are flabbergasted at how the UK media has been bolstering the psychiatric lobby, presenting only one - very flawed - model of ME for the last twenty years.  And on the subject of nephews, my younger nephew, who's ten, almost eleven, dressed up as an assassin at Halloween. *

* update Welcome article by doctor/journalist James Le Fanu in Telegraph on the nonsense of PACE - rare to have intelligent articles on ME by UK journalist.

Sunday, 20 September 2015

Two papers and two films

I very much enjoyed this paper by Rose Richards: Writing the Othered Self: Autoethnography and the Problem of Objectification in Writing About Illness and Disability - she writes from the point of view of someone who has had a kidney transplant and notes that there are not many narratives around her particular illness. I found lots  resonated, although the paper refers to non-fiction/academic writing.

Also, a recent USA report via ME Research UK  is well worth a look, I have not read the whole report, it's very long, but the key arguments about ME are there. I've quoted a short paragraph via a tweet.

And I recommend two films I saw on DVD this month - both, by chance, about actors rehearsing for a play, and the lines they rehearse echoing real life. Cycling with Molière (in French with Fabrice Luchini whom I adore) is lighthearted and funny, though slight. Still, I probably enjoyed it more than the somewhat pretentious though clever Clouds of Sils Maria (with Juliette Binoche, but in English). We studied  Molière's  L'Avare  at university all those years ago and I recall the mirth like yesterday.

Saturday, 12 September 2015

Art and death and farewells in Glencoe and Greenland

Twitter can be wonderful. I first met artist and writer Nancy Campbell via Twitter, last year in March. Nancy had favourited a snowdrops photo, and I discovered she had produced a beautiful book, in the form of art cards, How to Say 'I Love you' in Greenlandic. I immediately got the book for my stepdad (I may have traded a copy of my novel for Nancy's work, I can't recall - I've done this several times, used my novel as currency for art).

My stepdad spent many happy hours reading through the cards, enunciating the Greenlandic words - I can see and hear him now - correcting me when I got the pronunciation wrong. Childhood memories are important in dementia, and we didn't know the old songs/fairytales/poems that would stimulate him, so these cards played a special role.  When he died, I wrote a message on one of the cards, wrapped gold ribbon round it - a bit 'blingy', but it was all I could find - and placed it in his coffin. You'd be surprised at what is not allowed in coffins for cremation - some of the other objects we'd wanted to place were not permissible. There is an instinct, I think, to put in many objects of comfort for the departing soul. Though that is, of course, more to comfort ourselves.

I was delighted when Nancy told me she'd applied for an art residency at Ilulissat's Emanuel Petersen Museum, which, before it was a museum, was my stepdad's childhood home. We could not have known that by the time she did the residency my beloved stepdad would have passed away. By sheer coincidence my mother had planned to scatter his ashes in Glencoe, the same week Nancy was in Ilulissat. Nancy kindly asked if there were any mementoes of my stepdad's we would like her to take to Greenland. We decided to send her his order of service with loving messages written on the back by various members of our Scottish/Scandinavian family. I asked Nancy to perform whatever ceremony she could, I suggested making a wee boat and floating it away, but was putting the event entirely in her hands. I knew she would know what to do.

Scattering my stepdad's ashes in Glencoe - or more accurately Glen Etive - was a peaceful and beautiful occasion. The sun shone and we played Local Hero soundtrack gently in the background - he loved this music - and my younger nephew played a sad folk song on the violin. Buachaille Etive Mor stood solid and strong in the background. There were deer,  and house martins diving all around. We put a few drops of whisky on the ground to send him on his way. I brought back some wild flowers and pink heather, the flowers died straight away, the heather has survived and is on my bookshelves.

Early on in their marriage, my mother had a local artist paint Buachaille Etive Mor for my stepdad as a gift. It was one of his favourite spots in the world. The painting hangs in their house and now when I look at the painting I know he is there, physically part of the landscape. Internet connection in Greenland and Glencoe is, unsurprisingly, fickle, so I did not know what Nancy had done on that day, but I did think about Greenland when we were in Glencoe and was curious.

Last week, Nancy sent me a beautifully detailed, long email of what she had done, I read it in tears, touched by her great thoughtfulness and creative gestures. She had placed my stepdad's memorial card on top of the harmonium in the museum for a couple of days, among the stunning Emanuel Petersen paintings. And she put sage leaves around him that she'd brought from her garden in Oxford. She said she liked the idea of sage helping spirits to rest. After the harmonium, for the final goodbye, Nancy chose to place his order of service in an Ilulissat hilltop graveyard, under a piece of gneiss she had chosen as an anchor. She placed him at the southern most tip of the graveyard, pointing towards Scotland. She told me that in Inuit culture, wide views of the sea are important for the location of burial sites. This is a photo of the cemetery taken by Nancy. There are harebells and blueberries growing, and mussel shells and plastic flowers on the graves.

                                                                     Ilulissat, photo by Nancy Campbell, 2015

Nancy and I have never met - though I hope we do, one day - and she did not know my stepdad, but by a quirk of fate, she became intimately involved in our bidding farewell to him. His twin brother, who lives in Copenhagen, hopes to scatter his remaining ashes in Ilulissat next year. Then the farewell will be complete.  I think of how our lives are threaded, my stepdad could never have known that the artist whose cards he enjoyed so much in the last year of his life would be taking him home to Greenland. And Nancy, when she favourited a photograph - garden snowdrops I'd taken on my very unsophisticated phone - could not have known where that would lead.

It is seven months now since my stepdad's passing, my own grief is more gentle, for sure, but it's without exaggeration when I say that he was my best friend. Now that he is gone I know this more than ever. I have yet to meet a kinder man. Thank you, Nancy, for what you did for him.

Thursday, 13 August 2015

Prof Julia Newton's excellent severe ME research; & active verbs & buffoonery

Terrific to see Julia Newton's recent research project: identifying those with severe ME in Newcastle area. 

Real science.  That might actually help people.

The buffoons are, to be sure, slowly retreating. The new BACME - those self-appointed experts - medical guidelines state that 'CFS/ME is not a mental health issue'. No shit, Sherlock! You can tell they are trying weakly to embrace the biomedical model, having, of course, previously supported the horribly flawed biopsychosocial model, but their true colours are still there - no mention of pacing, which is how people with ME fucking survive.

And still predictably promoting PACE/CBT nonsense -  psychobabble galore, it really is a hoot, active verbs and everything:

But they can't give up all their beliefs at once, can they? And who is regulating BACME? 

Perhaps being part of the ME Research Collaborative has reigned them in a  bit.

Sunday, 2 August 2015

Writing, Rituximab & a Japanese film about death

Three pieces on writing I have recently enjoyed:

An interview with Janice Galloway, who has a new collection of short stories out. Speaking about the blurring of memoir and fiction, she says: 'It’s all stories, as far as I’m concerned and your job is to tell the story interestingly and not be dull.'

I agree with her wholeheartedly.

Here, writer Fiona Melrose on how a Caravaggio painting she loves makes her think about story and construct: 'Someone central in your story has to want something that drives some sort of journey, even if the thing they want the most is to stop everything from changing.'

I think that's an interesting point. Writers learn early on their main character has to want something - I remember reading years ago that your character has to really want something, even if it's just a glass of water - but wanting things not to change is often a driving force in real life, so of course applies to fictional characters.

And a very interesting essay on ethnicity and writing - should ethnicity limit what a writer can write? - from  Susan Barker, who describes herself as 'British — mixed-race English and Chinese, but linguistically and culturally British'. I too am British, a Scottish mother and Pakistani father, and I certainly feel culturally and linguistically Scottish. 

I've been thinking recently that Helen Fleet my main character in 'The State of Me' is white, it never occurred to me that she wouldn't be. My novel is about illness, not race. Writing Caucasian characters is natural to me, whereas writing Asian characters is harder as I did not have much Asian influence in my childhood. I am less confident with Asian characters, but that does not mean I should not write them. After all,  fiction-writing is pretending to be someone else. And I am in the slow process. 

I tried to say more about this in the comment thread of an excellent blog post about diversity and fiction  back in June by Nikesh Shukla.

Going back to Susan Barker's essay, she says: 'In a best case scenario, what should determine the legitimacy of fiction is the writing itself, and though this is not always the case, fiction writers should not be deterred from writing from other cultural perspectives.'

Indeed, it's the writing, always the writing.

Also, good news on Rituximab last month, phase 2 of the Norwegian drug trial was published. I feel cautiously optimistic. Just so gratifying to see actual science in progress, after decades of buffoonery.

And I highly recommend this Japanese film from 2009, 'Departures', a gorgeous film about death.

Friday, 10 July 2015

'Trying out different fathers' - my thoughts on Omar Sharif

Had tears today, hearing that Omar Sharif has died. Sad for his family, but happy for him that he no longer suffers the ravages of dementia. To me, he is more than the handsome Egyptian actor who glittered in Dr Zhivago and Lawrence of Arabia.

I grew up hearing that my father looked like Omar Sharif. My father was my mother's first husband, she met him in the sixties when he was a doctor and she was a nurse, a Mills & Boon romance without the happy ending. My father died in tragic circumstances when I was eight. My memories of him are hazy. He looks handsome in photos, and I can definitely see the resemblance (though I think Omar had the edge). When I first saw Dr Zhivago - aged thirteen? - I couldn't watch Omar Sharif without thinking of  my father. The tram scene had me weeping, and not just because Yuri  doesn't get to see Julie Christie again. I've since seen Dr Zhivago many times over the years, and the tram scene is me watching my father dying, which sounds fanciful, but that is the truth. My memory also tells me that I first saw Dr Zhivago in Karachi, when we visited in 1974 (after my father had passed away), but that is not true, I watched it a few years later at the cinema in Glasgow.

And I still can't even listen to Lara's Theme without welling up.

In May, when the media revealed that Omar Sharif had dementia I had a lump in my throat, having recently lost my beloved stepfather to dementia. To know that this brilliant actor now had dementia  touched me. And when my stepfather passed away, five months ago, I was unable to contemplate even a sentence of the novella I've been slowly writing, based on my father. My head was full of Greenland, there was no room for Karachi (my father was my father for eight years, my stepfather was my father for thirty-eight years).

The character based on my father is called Omar, I'd juggled many names but Omar fits best. Recently, I've ventured back to the novella when I have 'spare' energy - creative writing is more physically and mentally demanding that you would think - but I'm a different person writing as I no longer have a stepfather, there is a huge gap where he should be. Moreover, fictionalising my father has its own griefs and complexities: I  think of Bernard MacLaverty who has spoken of 'writing as a way of trying out different fathers'.

I say to my mother sometimes, Did he really look like Omar Sharif? Yes, she says, he did.

RIP, Omar Sharif.  In the meantime, I will try out different fathers.

*I watched Monsieur Ibrahim last year, I recommend it.

Sunday, 21 June 2015

The longest day

Today is the longest day and also Father's Day - the first one without my beloved stepdad. I can hear his lovely voice. I think of the hours I spent with him showing him pictures of Ilulissat on the iPad. He couldn't grasp how they got there, he thought I had done it, I'd explain, it's the internet and he'd say I didn't know the internet was interested in Greenland.

Since he left, I wear his Harris tweed jacket when I'm cold or missing him, it feels like he's hugging me. Today, I miss him and feel cold, it's freezing, June in Scotland usually is. So the Harris tweed is doubly needed, and I feel like a student in eighties again, when we'd wear  mansized - usually, our boyfriends' - clothes.

An orange poppy bloomed this morning, of course I see it is a sign that he's here.

And below some gorgeous wee pink wildflowers that I rescued before my mother, who was visiting, mowed away.