A couple of good things, a couple of bad things

Yesterday, I returned the dreadful Hystories by Elaine Showalter to the library, what a relief to have that book out of my possession, her cavalier dismissal of neuroimmune illness is simply bizarre. I can't even be bothered to talk about it any more, I tweeted a few times about it last week. I also discovered that local libraries stock food recycling/compost bags, so was very happy as I have just used up the ones the council provided a few months ago up. I was hoping to take out Claire Messud's The Woman Upstairs, but I could not remember her name, I was furious with my stupid head - and it does feel like a kind of stupidity, this cognitive bleakness caused by ME - not the normal 'can't remember what I came in for', more like a database being erased from your head - spaces where facts should be: I was trying to remember her husband's name too, as a way back to her, I knew he was a critic - James Wood - and by the time I remembered, the library was closing... And not only can I now tell the difference between a herring gull and a lesser black-backed, I've learned there is such a thing as a red admiral butterfly *and* a small tortoiseshell. I thought tortoiseshells were only a kind of cat. You live and learn.

Joe Sacco, Margaret Atwood, Filippe Bologna - & the difference between gulls

I've had to spend half of the last week in bed so, it was lovely to get to the book festival - literally a hop and a skip from me by taxi - to see Joe Sacco, so charming and interesting. I was given Palestine as a gift ten years ago, I still dip into it. I opened it last night and a bookmark my nephew had made a few years ago fell out (that is the loveliness of a paper book). The festival has deckchairs in the garden with authors' quotes: I liked Margaret Atwood's from The Blind Assassin: 

 'The only way you can write the truth is to assume that what you set down will never be read.'

I've finished Filippo Bologna's The Parrots, a shortish book, harder to tell on Kindle, but I was stopping and starting in my usual way, so it took me a couple of weeks. A long time since a book has made me laugh out loud so much. And I feel like David Attenborough as I can now tell a herring gull (pink legs) from a lesser black-backed gull (slightly smaller, darker, yellow legs) from watching the birds in the garden.

In love with Robert Hass

I hurt my fucking back - again - this time taking laundry from the basket (the tiniest 'wrong' move can fell you, but you can't avoid it as you don't know what it is 'til too late), so I spent last night eating Solpadol 30/500 and reading Robert Hass. I have fallen for him bigtime, his poetry is splendid and I can't believe I had not heard of him before. He reminds me a little of Lydia Davis, another writer I recently discovered (and love).

'It is good to sit down to birthday cake

with children, who think it is the entire point

of life and who, therefore, respect each detail

of the ceremony... '

Robert Hass,  'September Notebook: Stories'

*

And I can't resist this new review of The State of Me. Always pleased when a reader comments on the writing as well as the (hugely important) message about the illness.

The Parrots by Filippo Bologna

This made me smile: an extract from The Parrots by Filippo Bologna (Pushkin Press), which I've just started reading on Kindle:

“I read your last book,” she said. “It was very moving.” Then she added, “There’s something I have to know.” “Go on.” “I’m the main female character, aren’t I?” The Writer smiled without replying. At the beginning of his literary career, every time someone close to him saw themselves in one or other of his characters and demanded an explanation, he would give a reply of an aesthetic and literary nature, to the effect that novels are works of fiction, it’s all a process of casting a critical eye on reality, even in an autobiography the narrator doesn’t exactly correspond to the author, you always start with a real event and transfigure it through your imagination… and so on. Then, as time had passed, he had given up. Not so much because he didn’t find such replies satisfactory (although that was part of it, of course), as because the others found them unsatisfactory. The only thing, the ultimate thing that you could do when someone asked a question like that was to say, “Yes. It’s you.” Even though this could provoke a quarrel or bring a friendship to an end, it was the only possible reply. The only one capable of satisfying that morbid curiosity, that sordid voyeurism, the only truth that people really wanted to hear. For some unknown but human reason, recognizing themselves in a character in a novel made it possible for them to recognize themselves as individuals in the real world. It was like a literary Eucharist that signified their rebirth, their transition to a new life.

Bologna, Filippo (2013-07-04). The Parrots (Kindle Locations 360-372). Pushkin Press. Kindle Edition.

More on the writer here.

Hell of writing/not writing

I love this quote from American poet Robert Hass:

"It's hell writing and it's hell not writing. The only tolerable state is having just written".

Now I want to read all of his poems.

The last word

Interesting to read about writers who write the last chapter (even sentence, in case of John Irving) first. I love Graham Greene's words:

So much of a novelist’s writing, as I have said, takes place in the unconscious; in those depths the last word is written before the first word appears on paper. We remember the details of our story, we do not invent them.”

And an update on Rituximab research from ME Association.

Watching Glastonbury made me feel old...

I watched snippets of Glastonbury, it made me feel old, though not as old as The Rolling Stones (have never been a big fan but loved their wrinkled energy, Kenny Rogers too, he made me smile). I learned of new bands. I really liked: The xx, Stealing Sheep (gorgeous girls), Jake Bugg (gorgeous boy), Weekend Vampire and Laura Mvula. I thought back to the Loch Lomond Rock Festival, held in the old bear park -  we had a bear park and a bear escaped one year. I remember seeing The Buzzcocks, and I brought home a boy called Michael - in my memory, he slept in the bath (I was fifteen), but I can't  see my mother having allowed that.

Lydia Davis

As Lydia Davis – a writer I have happily just discovered – says: 

'A character in one of my stories may resemble me in certain ways, through a selection of biographical facts or psychological characteristics, but she is something different, a creation.'

Indeed.

Free ebook and a review!

Summer give-away by The Friday Project: the ebook version of The State of Me is available as a free download for a limited period! I was pleased to see this new, rather lovely,  review (4 stars) on Amazon yesterday:  I love the honesty of the review and that the s/he feels bad about pointing out the 'negatives'. 

This chatty, funny and insightful book was thoroughly absorbing. Nasim has done a wonderful service to people with ME, by being very open about all aspects of the illness but never self-pitying nor boring! The reader can only cheer her on whilst she snatches what life she can out from under the debilitating illness. All the characters are written well and the writer has a knack for portraying relations deftly but true. It was truly a joy to read, if sometimes a little heartbreaking.The only reason I haven't given the book 5 stars is that I felt it could have done with editing down a little of some of the inconsequential chatty detail. The author plays with form, which is wonderfully entertaining, but I would have liked to have seen it used more consistently which I think would have made it more affective. For instance the author swapped between first and third person for the first part of the book, but at some point that was just dropped. Perhaps it could have been used to great effect later on, or perhaps that needed to be edited out altogether? I feel mean writing the above though, because this book has been my constant companion for days and I've read it every chance I got.      

I felt I wanted to respond to the points made, not as criticism (a reader's views are a reader's views) but more for clarification. The 'inconsequential chatty detail' made me smile, having just ploughed through Knausgaard (see previous post) where the dialogue is often inconsequential. A favourite scene of mine (in A Man in Love) is a New Year party where the dialogue suddenly comes 'alive', there are conversations dripping with meaning, long sentences, which contrast sharply with the previous, often static, 'purposeless' dialogue. Knausgaard's point is that dialogue *is* often boring and inconsequential, he is not concerned, and in The State of Me,  pared down dialogue (that doesn't move the plot along) is to reflect the utter tedium of chronic (at times, severe) illness.

The points about the shifts from third to first person are a little more challenging  as a great deal of time and energy (I view everything in terms of energy)  was used on these shifts. The technique was not simply 'dropped' as the reader has observed, it was deliberate. I shift between first person and third person throughout the book, third person to show her most ill, isolated times, and of course, the third person narrator has a knowingness that Helen doesn't. ie that 'chronic fatigue' will come to be the tragic misnomer for Helen's illness a decade down the line, that myalgic encephalomyelitis, the neuroimmune process that has punched into her life, will be endangered as a diagnosis, hijacked by psychiatrists. The flitting between third and first was mostly intuitive, it just happened. I also use asterisks a lot - and present tense - to slow down the pace, though the asterisks have been lost in the Kindle edition, but I'm told it hasn't detracted from the experience of reading the novel, but I still prefer the paperback version for this reason, while delighted that people can also read the e-version. Still, re. the shifting views  being 'dropped', it is always interesting to hear how your writing is perceived. That is the whole point!

Enjoy the free ebook, it is only for two weeks. Please do write a review on Amazon or Goodreads or blog or Twitter if you can. Reviews are hard to write  (at least, I find it hard) and I always appreciate when people do write a review, even a very short one.

*Just to say the book is only free via Amazon UK and iTunes UK.

Fabrication (in fiction and medicine)

It's something of a relief to be finished Karl Ove Knausgaard's A Man in Love (I finished a week ago) though I would still recommend it. There are four volumes of the series (of six) still to be translated. I skipped the first one as I don't much want to read about alcoholic fathers, especially when I am trying to write about it (have been sporadically for the last year, a kind of novella-memoir). I feel the same way, these days, about alcoholic father narratives as I do about illness narratives, jaded, but I recognise we still have a desire and need to read - and write - such narratives. My favourite quote from trawling through 520 pages of A Man in Love - and it is a trawl but worth it for the gems - is when he is talking about potential research for a novel:

"… just the thought of fiction, just the thought of a fabricated character in a fabricated plot made me feel nauseous, I reacted in a physical way."

And at the end of this memoir/novel, he tells us:

"The only genres I saw value in, which still conferred meaning, were diaries and essays, the types of literature that did not deal with narrative, that were not about anything, but just consisted of a voice, the voice of your own personality, a life, a face, a gaze you could meet."

Knausgaard is wholly self-obsessed - and not as interesting or original in his 'profound' thoughts as he thinks he is - and neither is he afraid to use dreadful clichés - but his narrative/voice is oddly compelling - and comforting. He has certainly pulled something off, although I am still unsure of what exactly it is. And I love this comment: You write novels because something is broken. 

*

A great article from Dr Nigel Speight in the Saudi Journal of Medicine and Medical Sciences, making some excellent points about the politics and history of ME. He notes that in severe cases:  Multiple symptoms are the norm, and severely affected cases may have more than 20 symptoms. I remember when I first got ill in 1982 I seemed to have a new symptom every day, I would write them down to keep track (this was, of course, the beginning of the writing process but I could not have known at the time):

"Her symptoms have signed a lease behind her back and moved in permanently. They like living in her muscle tissue. It’s nice and warm there." (The State of Me) 

Dr Speight also refers to the scoundrels McEvedy and Beard, the psychiatrists who famously claimed that the Royal Free outbreak in 1955 had been hysteria without even examining the patients (1970), and incomprehensibly influenced others. Dr Byron Hyde, in his very interesting book, describes how when he met McEvedy years later he had justified the hysteria claim by saying it made for 'an easy PhD'. You couldn't make it up. (A shorter version of Dr Speight's article is here via ME Association.)

The man in the camel coat

Last year, in April, I was coming out of Waterstone's in Edinburgh's west end and a smiling man opened the door for me with a flourish, he seemed familiar, I knew I knew him but I couldn't place him. He had a kind face. I remember he was wearing a camel coat, though  memory is fragile so I can't be sure. When I got home I looked up Waterstone's and Iain Banks was doing an event that evening and of course it was him who had held open the door. Like many, I was gutted to learn of his diagnosis of terminal cancer  a couple of months ago  and yesterday's news left me with a lump in my throat, it was too soon, it could not be true, he surely had a few more months left. Although I'd only read a couple of his novels, I knew he was a huge presence. I remember reading The Wasp Factory in a freezing flat in Aberdeen in the 80s and we all devoured The Crow Road in the 90s, glued to the TV dramatisation too. I remember him tearing up his passport in protest over the Iraq war. Last night, I watched this interview with him from 2010 that has been put up as a tribute, he is funny and warm. I did not know the M stood for Menzies. And I love that his ashes will be scattered in Scotland and Paris and Venice. And this, a touching piece from Stuart Kelly, former literary editor of Scotland on Sunday: 'The universe has less Wonder in it today'. Iain M. Banks RIP.

*Five days left to watch this wonderful documentary Raw Spirit, a BBC Scotland  interview with Iain Banks shortly before he died.

Notes by Dr William Weir from 8th Invest in ME Conference, May 2013

From Invest in ME's Facebook page:

Notes made by Dr William Weir at the 8th Invest in ME Conference, May 2013.

Permission to repost.

INVEST IN ME

Synopsis of proceedings of 8th International Conference held on 31st May 2013. Dr William Weir FRCP (Lond) FRCP (Edin)

The main theme of this conference focused on the three burning questions which all ME sufferers want answered, namely what causes ME, what is being done to discover this cause and what treatments might be effective? What was very encouraging was the impressive cast of speakers from around the world whose scientific credentials could not be challenged. Happily, none of them were psychiatrists, as gradually the psychiatric, biopsychosocial theory of ME causation is being consigned to the dustbin of history. There is now far too much high quality scientific evidence indicating that ME is due to immunological dysfunction and many of the speakers stated this principle very forcefully.

There were four main categories of speaker. Firstly there were those who talked about the organization of studies, which included the collection and computerisation of data (such as case histories) and biological material (such as blood and other body fluid samples). Clearly, in the USA at least, work of this nature is now getting off the ground and a large effort is being made to establish a “biobank” of biological materials from patients which will be made available to researchers. Here in the UK a biobank has already been set up, based at the London School of Hygiene and Tropical Medicine to where blood samples are being sent for cold storage.

Secondly there were the immunologists who described the immunological abnormalities seen in ME patients. One of the frustrations with ME is that, although there are always across-the-board abnormalities, those seen are never as consistent as they are, for example in AIDS where one particular type of immunologically active cell is consistently reduced. However one of the speakers came out with the opinion that: “if any doctor now thinks that these abnormalities are due to psychological disorder and that exercise is the cure, he/she should be deregistered” (He was from Australia).

One phenomenon which is now well recognised is the “cytokine flare” which follows physical (and mental) exercise. Cytokines are substances produced by the immune system as part of a normal immune response to the presence of an invading bug, be it a virus or bacterium (or other, such as a malaria parasite). Interferon is the one most people have heard of. They make you feel ill as part of the body’s normal defence against infection. In ME however they appear to be produced inappropriately, and go on being produced in the apparent absence of a recognisable infection. Furthermore there is an abnormal increase - “flare” - after exercise which now explains the problem of post exertional malaise. Here, at last, is direct evidence that Graded Exercise Therapy (GET) is very likely to be harmful.

Thirdly the issue of a possible virus infection was addressed. This would provide a logical explanation for the ongoing immunological activity – finally identifying the metaphorical fire from which all the immunological smoke was coming. The XMRV story was reviewed and provided real insights into the complexities of identifying a “new” virus. The term “new” meaning hitherto undiscovered, as it is fully appreciated that there are probably very many undiscovered viruses out there in the biological ecosystem, often being carried silently (ie without illness) by a large range of animals, including humans. The disease -causing potential of these viruses is unknown and may have very long incubation periods with infection preceding the development of disease by many years. For example It has been suggested that Parkinson’s disease is due to such a virus, and the same may be true of ME.

As many will know, XMRV was finally recognised as a contaminant of the cultures in which attempts were being made to grow a new virus from samples taken from ME patients. The initial excitement over the discovery of XMRV was dampened when this was realized, but has not deterred the search for other viruses. To apply historical perspective, when influenza was first researched, a number of bacteria and viruses were initially but incorrectly proposed as the cause before the real villain was identified. Some very sophisticated techniques are now being used in the search for the real ME villain, one candidate being a form of retrovirus known as a “human endogenous retrovirus” (HERV). These are viruses which are already present in human genes, and usually inactive (ie not replicating). Nonetheless they probably can be turned on again and they have been postulated as causes of a wide range of diseases, including cancer and autoimmune disease. Thus ME may well be due to a HERV.

Finally there was a presentation of the Norwegian study of rituximab therapy which shows promise in the treatment of ME. Twenty of twenty eight patients improved significantly although there was a lag period of two to three months before improvement occurred. Rituximab specifically targets the CD20 lymphocytes, taking them out of circulation but well before symptomatic improvement – suggesting that it is antibodies produced by the CD20 cells which cause the symptoms, but which require the 2-3 month period to clear from the body. This study on its own supports the immunological hypothesis of causation, further diminishing the psychiatric attribution of an “abnormal illness belief”.

Rituximab does however have its drawbacks. It is potentially very toxic, also very expensive and no UK doctor would be able to prescribe it for ME at present. Further studies are in progress.

 * And I'm delighted to see that Professor Malcolm Hooper was given an award by Norwegian ME Association at the event.

A Norwegian writer, a Pakistani orchestra & a biomedical conference

Have recently discovered:

Karl Ove Knausgaard's novel/memoir A Man in Love (part two of a six-part series. I skipped part one, and the others are not yet translated). His writing is slow and self-obsessed, but there is something comforting about the pedantry and rhythm. I am wading through, it is worth it for the gems, and observations on the Swedish/Norwegian arts and writing scene. I first came across him in this review a while back, and a Norwegian friend has since filled me in on the stooshie he caused back home.

And the Lahore-based Sachal Studios Orchestra. The background to the musicians is here, a little heartbreaking. This is their version of REM's 'Everybody Hurts', and Dave Brubeck's 'Take Five'

And this wonderfully hypnotic Sufi music, which is used in the opening sequence of The Reluctant Fundamentalist.

Also, today is the annual International Invest in ME conference in London with researchers from all over the world. Is being live tweeted by  @DeBortgjemte.

Louis MacNeice

I recently read that the poet Louis MacNeice had been sent by the BBC to India  in 1947 to report on Partition. I knew his name, of course, but was not familiar with his work (I don't read much poetry, shame on me!). Tonight, I came across his poem 'Snow' and I had to read it three times, I loved it so much. Now, I want to know everything about him.

Some articles on Pakistan election

Have been fascinated by the election in Pakistan (though I still get a bit confused with all the parties). Some great articles and different perspectives:

Writer Mohammed Hanif in the Guardian.

Journalist Declan Walsh, who was, ludicrously, expelled from Pakistan last week.

Writer Bina Shah on her blog.

Muhammad Idrees Ahmad in London Review of Books.

And this was before the election, a long article by  Mira Sethi which I still have to finish, but  gorgeously informative.

When we visited Pakistan in 1974, Zulfikar Ali Bhutto would have been prime minister, of course I was just a child and had no idea of these things.

Reading from a Chesterfield with Lister looking on...

Last week, I read at the Dissecting Edinburgh 'Writing Medicine' event in Surgeons' Hall, alongside Alison Summers and Tracey Rosenberg (their websites are listed in the previous link). Alison is writing a novel about Pick's disease, and Tracey, a novelist, has also published poetry about cancer. The venue was changed from the pathology museum to the library and what a gorgeous library those surgeons have!  I had a wonderful Chesterfield armchair and  Lister looked down from his painting behind me  - I felt protected. I should say I was not on my best form, I was wrecked  even before the reading - I was in bed until four o'clock -  but that lends to the authenticity, I guess. Alison and Tracey are both great performers, I loved their energy. This is only the second time I have read from The State of Me in public - though I did read a short extract on the BBC Alba documentary 'Toxic Tiredness' in 2011, but that felt different, the audience was not yet present, I read to a camera man at my kitchen table (you can be more sassy in your kitchen). I was saying to friends, after Surgeons' Hall, that at my Waterstone's launch in  2008 - it still had an apostrophe then! -  it felt very much like I was reading fiction aloud,  my precious novel out at last, after all the hype and craziness before publication. This time though, I felt almost tearful when I was practising the extracts beforehand - it felt like I was reading about my life - Helen Feet's plasma exchange in the eighties, and  I felt sad.  But what a treat to have read in Surgeons' Hall. And lovely to see some of my friends there and new faces too, though it is a big tangle of colour when everyone is focused on you. My head gets that inflated/pumped up feeling and I have to take myself away and untangle the threads.

* Delighted to hear from Alison that she loved The State of Me, which she has just finished reading.

The power of narrative (for good and ill)

I am increasingly interested in why we read stories, I think it might make you a better writer if you understand the seduction of narrative (though maybe it is better not to think about these things at all, and just write).  I've been dipping into The Storytelling Animal by Jonathan Gottschall:  The riddle of fiction comes to this: Evolution is ruthlessly utilitarian. How has the seeming luxury of fiction not been eliminated from human life? My stepdad continues to bemuse us with narratives based on false memories - and what else is narrative if not memory? - he told us at the weekend that he had travelled across India by train in the nineties. He also referred to dinner plates as 'big flats', which is just poetry. I've been horrified at the pre-election violence in Pakistan (my family on my father's side live in Karachi). This clip from a couple of weeks ago is unbearable to watch, capturing a young boy's trauma after a bomb has gone off in Peshawar.  I cannot claim to understand much of the political narrative that is playing out in Pakistan at the moment, but my heart sinks at the seemingly  endless cycle of violence. This is an interesting article  by doctor and writer Qanta Ahmed, who lives in New York. She explores the twisted, nihilistic  narrative that seduces young men like the Boston bombers - there is no motive, just narrative which brings 'meaning' to their senseless and cruel  acts.

Too much lactic acid in her legs

In my novel,  the main character Helen Fleet has a series of sarcastic/humorous exchanges with a stranger. Describing how she feels after trivial exercise (remember this is the eighties), she says she has too much lactic acid in her legs.

This has been validated in research reported in the Times the other day:  Professor Julia Newton's study found that PWME produce up to 20 times more lactic acid than healthy controls: 'The finding shows ME leads to a cascade of physical changes right down to the cellular level.' Consultant neurologist Professor Peter Behan, of course, discovered muscle/mitochondrial abnormalities in 80s and 90s. (I had a muscle biopsy in late 1983 - and EMG and specific Coxsackie tests - to aid his diagnosis. He told me I had a 'full house of abnormalities'.)

It is indeed heartening to see biomedical findings being reported responsibly in mainstream press. We have become so used to pejorative, ill informed articles, and PACE nonsense. I think - I hope! -  we are actually now, in the UK, looking at a horizon of proper research, where my illness will be granted the respect it has been denied for too, too long.

The biopsychosocials' position in denying  reality - conflating ME with 'chronic fatigue' for decades - trying to label a neuroimmune illness as a mental illness - is simply untenable. They will be seen to collaborate with serious scientists, then they will hopefully retreat from the scene altogether. I would prefer the 'biopsychosocialites' were nowhere near this new 'big tent' of research, but at least we can keep an eye on them, hopefully they will stay in a corner and practise their witchcraft quietly. This conflation of physical illness with mental illness has helped no one. I think the truth has finally dawned on them. They will, of course,  never admit they were wrong about ME. How could they?

This  new Science Media Centre collaboration is nicely explored here  by  Invest in ME.

I welcome all research into properly defined ME, and sincerely hope we are turning a new page. I don't want to have to live another thirty years without effective therapies.

* A good summing up of the state of play here by Simon McGrath.

Fiction, memoir and International Consensus Criteria

Charming article from Chimamanda Ngozi Adichie  on fiction and memoir, she says: 'I long for a new form, a cross between fiction and memoir...' and speaks for us all when she says that 'fiction is more honest than memoir'. This is exactly why I wrote The State of Me as a novel and not a memoir, I wanted to get closer to the truth, as I described here. Also, I love that she is so laidback about fiction and memoir overlapping.

I'm re-reading 'On Being Ill', Virginia Woolf's brilliant essay in which she ponders the lack of novels about physical illness: 'The public would say that a novel dedicated to influenza lacked plot ...'.  It made me think of this extract from chapter eleven of my novel:

stranger   What did you do today?

me              I made cheese scones and put a dead bee in the bin. 

*

Last week, I received a few printed and bound copies of The International Consensus Criteria 2012 from Invest in ME, and on re-reading, am struck again by how important such a document is:

Problem
The label ‘chronic fatigue syndrome’ (CFS), coined in the 1980s, has persisted due to lack of knowledge of its etiologic agents and pathophysiology. Misperceptions have arisen because the name ‘CFS’ and its hybrids ME/CFS, CFS/ME and CFS/CF have been used for widely diverse conditions. Patient sets can include those who are seriously ill with ME, many bedridden and unable to care for themselves, to those who have general fatigue or, under the Reeves criteria, patients are not required to have any physical symptoms. There is a poignant need to untangle the web of confusion caused by mixing diverse and often overly inclusive patient populations in one heterogeneous, multi-rubric pot called ‘chronic fatigue syndrome’. We believe this is the foremost cause of diluted and inconsistent research findings, which hinders progress, fosters scepticism, and wastes limited research monies.
 
Solution
Myalgic encephalomyelitis, a name that originated in the 1950s, is the most accurate and appropriate name because it reflects the underlying multi-system pathophysiology of the disease. Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC because a distinctive disease entity should have one name. Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.

*

 

I wish every GP in the land had a copy on their desk, would stop them writing derivative nonsense like this  (annoys me more as Margaret McCartney is a Glasgow GP, perhaps she thinks consultant neurologists at Southern General routinely gave plasma exchanges for somatisation disorders in 80s?).  Her article is from 2008, maybe she has educated herself since then about biomedical abnormalities, one can only hope. 

The ME Association is, in fact,  sending out educational material to GPs this May. Patients have given names of practices they wish the booklet to go to. Education of GPs is, of course, paramount to stopping the  lazy perpetuation of myths and fiction that has done so much harm to people with my illness. Am curious: are there any 'meeja' doctors in UK who write responsibly and accurately about ME?  I honestly don't know of any.

Margins, B-cells behaving badly, and a wee dance

Interesting post  - and discussion - on medical humanities and literary medicine from the Centre for Medical Humanities Blog. And a wee reminder that I'm reading extracts from The State of Me at Dissecting Edinburgh event  'Writing Medicine'  on 2 May. I  often say I live on  the margins of the writing life, I can't run around promoting my book, so it's lovely to be joining the mainstream for an hour or two. Is the first time I've read from the novel since 2008. Tickets free, though I'm told there are not many left. The reading will take place in the fascinating pathology museum in Surgeons' Hall.

Is ME all down to B-cells behaving badly? Rituximab research of Norwegian doctors Mella and Fluge reported in Discover Magazine. Good article, but the oft-used photo of a model in crisp white shirt looking like she has a bit of a headache to represent neuroimmune illness is beyond annoying.

Very encouraging to see Norfolk and Suffolk standing up for the neuroimmune model, they are pushing for CFS and ME to be treated separately, and advocate a biomedically driven, consultant-led clinic rather than the currently flawed CBT/GET 'fatigue' clinics (their clinic was in fact biomedically led until 2005). Of course, the Scottish Public Health Network recommended the same, but we unsurprisingly got the Lothian ME/CFS clinic instead.

At the weekend,  after reading this article, I discovered the Wagah border-crossing ceremony, a huge tourist attraction, where the Pakistan and India flags are lowered every day, and the border closed, before sunset. Michael Palin has called it 'choreographed contempt', and there is more than a touch of Monty Python to the whole thing. Gloriously camp, though, obviously, serious undertones.


*Had an email today from a reader whose partner has ME. I loved this: 'Great read, shit illness, be proud for looking it in the eye and spitting'.