Thursday, 21 September 2017

Good news: NICE review - and a science writer who listens

Finally, some good news from NICE, they dug in their heels for ten years with an absurdly harmful guideline - recommending graded exercise and CBT for mild to moderate ME - which they conflate with fatigue - and simply ignoring severe ME - but now they have agreed to a full  review. We can only hope that all the cosiness and networking behind the scenes will be broken down by actual evidence and science. The Royal College of Psychiatry, who naturally did not want an update - must be disappointed that their big cheeses are losing their cold grip over this illness.

Meanwhile, some great research explored at the recent CMRC 2017 (if we can ignore Esther Crawley's involvement). With names like Avindra Nath, Jose Montoya, Julia Newton etc, we are getting to the truth. 

Slowly, slowly.

I rarely go to writers' events - I'm sociable, but mingling usually means standing and I always have to sit down after five minutes - separate myself off from everyone - but in August I attended an event where I met a freelance science writer with a 30 year career in virology/biochemistry laboratory work. I told him about my illness and novel and he was very interested and we agreed to send copies of our respective books. He has since read my novel and has been reading up on PACE. He has a comment piece on ME in the pipeline for an Irish  medical journal. I have been struck by how  receptive and respectful he has been of  my illness experience. He may even have looked at my own blood for Coxsackie, as samples from patients with 'presumed ME' were being sent from Glasgow to Edinburgh in early/mid eighties when I was being diagnosed. The stuff of fiction.

I am enjoying dipping into his (accessible for non-medics) text on clinical virology (1999). Have learned that enteroviruses are the same size and shape as rhinoviruses but can survive in acidic conditions. I've been thinking of when I first got ill - thirty-five years ago this month - and Coxsackie unbeknownst to me had taken up residence in my gut.

Saturday, 5 August 2017

The scandal of PACE trial continues to shock

Last week the Journal of Health Psychology published a special edition on the travesty that is the PACE trial. Editor David F Marks knew nothing of the trial until a year ago and when he looked at the evidence he realised - as anyone rational would - that this highly spun - harmful - research is abject nonsense from start to finish. By pitting himself against the UK medical/academic establishment he has learned just what ME patients have been tolerating for decades.

Of course, the Science Media Centre's psych-driven lobby hit back with petulant, sour punches as toys were thrown out of the pram. The PACE researchers have nowhere to go, so this barrel-scraping for experts is entirely unsurprising. (Though they have rarely in the past ever used actual experts to comment on ME research, they prefer to use friends of PACE.) David Tuller has  done a great job of describing these recent dirty punches on virology blog.

Meanwhile, in the important, relevant world of research,  we have new findings from Professor Montoya's team on elevated cytokines and illness severity. And next week scientists meet at a Stanford community symposium: a gathering of great minds, including a Nobel Laureate, who have ME patients' welfare at heart, putting the medical mafia here to shame (although those mafiosi remain, as always, unshameable and impudent).

Sunday, 9 July 2017

'Re-writing the hurt' (Jeanette Winterson)

Podcasts can fill me with dread because *sometimes* they are dull and you (often) can't fast-forward. I listened last night - lying down with my eyes closed - to a Jeanette Winterson podcast from 2012, it is a joy and delight. Her clarity and honesty soar and you could listen to her forever. She talks about 're-writing the hurt' in order to be able to cope with the narrative or the memory of what happened. On the writing of truth versus fiction she says she realised - with sadness - after Oranges are Not the Only Fruit that she had written a story that she 'could live with', the other was too painful, she 'could not survive it'. 

As I write slowly, slowly about my Pakistani father, often weeks, even months, with no writing - always thinking, though, always - I understand this more than ever: the stories we (re)write often make the truth bearable. I often say truth comes more easily through fiction. I think it's one reason I had to fictionalise my illness for The State of Me - the physical hell and wilderness of  this illness  -  being a political football, to hell with actual patients - is just too painful.

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I'm reading (non-fiction) The Upstairs Wife by Rafia Zakaria. It's beautifully written and the Partition elements resonate for me, particularly descriptions of Saddar in Karachi, as that is where my father's family migrated to from north India in late 1940s/early 1950s.




I'm also reading (fiction) Memoirs of a Polar Bear by Yoko Tawada, which is funny and clever and heartbreaking, told from the point of view of three polar bears, an unnamed grandmother/memoirist, her daughter Tosca (though Barbara, her trainer, narrates parts too), and Tosca's son Knut (based on the real Knut in Berlin Zoo). The memoirist polar bear starts off in the circus and when being trained to get up on hind-legs by appliance of heat says: 'I'd always thought it was the floor feeling pain - not me - so it was the floor that had to change - not me - to make the pain go away'.

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I watched Toni Erdmann on DVD a couple of weeks ago, very different, funny and quirky, if a little unsettling. It is three hours long though and I had to watch it in two parts, no big hardship. It doesn't feel long, and that is the main thing. And is a film that leaves you feeling happy.

Wednesday, 10 May 2017

Dr Avindra Nath's research. And lovely books

I'm so very, very heartened by the research that is currently going in USA at the National Institute of Health with Dr Avindra Nath as principle investigator (PI). Dr Nath is a neuroimmunologist and exactly the calibre of scientist we need in ME research. His hypothesis is that ME is 'triggered by a viral illness that results in immune-mediated brain dysfunction'. His work is described as a 'deep-diving' into the disease, he is looking at not just one aspect but every aspect. Long overdue!!! Brian Vastag is a former science reporter for the Washington Post, now disabled by ME - he got ill almost five years ago. He's one of Dr Nath's patients - you have to have had a clear infectious trigger and been ill for less than five years - and has been tweeting some interesting details of the study. This is a lovely photo of doctor and patient (from Brian's timeline) - such mutual respect and warmth on display (can you even begin to imagine that scenario here with our so-called 'CFS experts'?).



More than thirty years ago, Peter Behan, the consultant neurologist who diagnosed me, was  looking into viral damage and mitochondrial dysfunction (I recently came across this article from 1985 in the The Journal of Infection. He describes muscle abnormalities in fifty ME patients, I'm uncertain if I was one of them but I had all the tests he refers to):


His paper states: 'The illness was severe, with a high morbidity, and a disastrous effect on their lives'. Of course, medical technology is way more advanced now and I'm optimistic about what will be uncovered in the years ahead. Just tragic though that a core in the medical profession, specifically UK psychiatrists, have held back biomedical research with their self-serving theories of false illness beliefs, and their wilful and sinister conflation of ME with 'chronic fatigue'. That's thirty-three years of my life I'll never get back - thanks, in no small part, to their biopsychosocial idealogy.

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Been meaning for a while to mention Marion Michell's book Supinely Sublimely (2016).




Marion is a German-born artist, based in London. She is very severely ill and I can imagine what it cost her to produce this slim book of meditations and art. I love the cover, which if you look closely has tiny paper boats as faces. There is a sense too of being shackled, at least, I see chains, and what is ME if it is not a kind of prison, in all its grimly fluctuating, punitive severity. The book is perfect for dipping into and there are gems such as: 'Limbs, jaws, skull, the hair on my head hurt, my hands had been stamped on, and something pounded my ribs and stole my air. Half a week later, I am still returning''.

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Another book I very much enjoyed recently is Zeeba Sadiq's 38 Bahadurabad (1996), a gorgeous mix of fiction and autobiography, it describes a young woman growing up in Karachi in 1960s with a doctor father who has spent time in Britain. I loved it, especially the chapter called 'Lame Auntie', the writing is exquisite. I was truly sad to learn that Zeeba had passed away suddenly in 2010 after suffering a brain aneuryism, we're almost the same age.

Monday, 10 April 2017

A Book of Banished Words

Delighted to have a short piece in Nancy Campbell's just published The Polar Tombola: A Book of Banished Words (photo from @BirdEditions).



More on  Nancy's live literature event  here: What happens when a language begins to disappear?


I first met Nancy on Twitter via a photo of a snowdrop three years ago and we came to 'know' each other through my dear late stepdad. My own banished word is described in 'The Hoot of an Owl', here is a fragment:

Coxsackie – pronounced cook-sah-kee – is the name of a small town on the Hudson River in upstate New York. Derived from Native American language, it’s said to mean the ‘hoot of an owl’. Poetic when whispered, but Coxsackie can also be a bully, swaggering its hard-sounding ‘C’s.
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Life is truly stranger than fiction. How could I have known in winter 1982 that the hellish illness that had ruined my year in France - yet to be diagnosed as Coxsackie virus, which in turn triggered ME - would, thirty-five years later, be represented in a piece in a beautiful art book whose author had (by then) done a residency in my stepdad's childhood home in Greenland?

Monday, 20 February 2017

Bath Flash Fiction Anthology - To Carry Her Home

Delighted to receive this gorgeous anthology of longlisted, shortlisted and winners in past Bath Flash Awards. My own story 'A widow with a bowl of wine and lipstick coming off' - longlisted in early 2016 - was inspired by seeing my dear stepfather in the funeral home just two years ago. I still can't go to that image in my mind without feeling shock.


Someone has remarked this cover has a feel of Vanessa Bell, I agree. I very much look forward to reading the other flash fictions (144 of them). If interested in getting hold of the book, you can order here. And if you want to know more about what flash fiction is, some descriptions here.

Tuesday, 24 January 2017

A change of mind...

Fiction titles are sometimes changed to be more nuanced and suit the country of publication. For example, Miss Smilla's Feeling For Snow by Peter H√łeg, translated from the Danish - I gave it my dear late stepdad in 1993 - was published as Smilla's Sense of Snow in the USA. Smilla - a half Danish scientist with an Inuit mother -  has 'a feeling for snow', which is helping her solve the death of an Inuit child who is her neighbour's son in Copenhagen.




What may be more surprising is that the UK title of Suzanne O'Sullivan's popular-science book It's All in Your Head (2015) has been changed to Is it All in Your Head? for  recent  publication in USA.


This title change from bold declaration to interrogative has, I'd bet, nothing to do with British/American English differences but more suggests that publishers are now well aware of the fire O'Sullivan has come under for her ludicrous, irresponsible and harmful chapter 'Rachel', in which she frames ME/CFS as psychosomatic. This 'subtle tweak', of course, does nothing to ennoble the content, but does highlight a lack of certainty, which is surely a little embarrassing for a prize-winning science book. We can only hope that the next tweaking will be Is it All in Suzanne's Head?

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This is a very good recent paper from Leonard Jason and Julia Newton and others, which explains the differences in criteria between 'chronic fatigue syndrome' and myalgic encephalomyelitis - signalling how crucial it is to know which disease we are diagnosing/studying (Suzanne O'Sullivan would do well to read it). Ramsay-defined ME - also known as classic ME - has the most physically impaired patients - and to fit the criteria you must have: acute onset with three major symptom categories: post-exertional malaise, neurological manifestations,  autonomic manifestations. Of course, I have all of these, though in the eighties, we didn't yet call the tell-tale burning/exhaustion in muscles 'post-exertional malaise' (PEM), we didn't know not being able to stand was 'orthostatic intolerance', and we didn't know not being able to remember the names of neighbours we had known for twenty years was 'brain fog' - we just felt as if we were dying.