Essay on The State of Me in Etudes Ecossaises, a bilingual academic journal

Was very interested to be alerted to this reading of my 2008 novel  in Etudes Ecossaises: Temporalities in Nasim Marie Jafry's The State of Me by Laura MacDonald. It is gratifying to see such a close reading of one's work, especially so many years after publication.

Who has control of the story? - Anna Katharina Schaffner's EXHAUSTION

I recall when I read Salman Rushdie's Joseph Anton in 2012, my favourite line was, 'Who shall have control over the story?'. I thought, naturally, of the way the illness myalgic encephalomyelitis (ME) - an illness I have had for thirty-three years - has been ceaselessly misrepresented in the media, and of the way health editors, journalists and academics have locked onto the narrative of a group of UK psychiatrists - who harmfully conflate ME with unexplained 'chronic fatigue' - and recycled it uncritically, for the last two decades:

'At the heart of the dispute over The Satanic Verses, he said, behind all the accusations and abuse, was a question of profound importance: Who shall have control over the story? Who has, who should have, the power not only to tell the stories with which, and within which, we all lived, but also to say in what manner those stories may be told? 

I think most would agree that ME sufferers have not had the power to tell their stories, that they've not been allowed a voice. The vacuous 'yuppie flu' headline in the 1980s is nothing compared to what is dished out now. It's highly unusual to read accurate accounts of the illness in the media - unless it's a first person account - and the question of who shall have control over the story has been in my head again these past two weeks or so.

*

A few years ago I had a friendly exchange with a young academic on a medical humanities thread, she was researching the history of exhaustion for her book, including ME and 'chronic fatigue syndrome'. ME, of course, belongs no more in a 'history of exhaustion' than MS or lupus or cancer, but I pointed her in the direction of my novel, of Dr Melvin Ramsay's brilliant 1986 book on virally-triggered ME (my now retired neurologist wrote the preface), and of the International Criteria Consensus 2011. I clarified that ME was not 'chronic fatigue' or indeed chronic fatigue syndrome. I explained that post-exertional malaise (PEM) - also known as post-exertional neuroimmune exhaustion (PENE) - is the cardinal symptom of ME. She thanked me and said she would explore these texts.

I thought no more of this until the weekend before last, when someone on Twitter told me that Anna Katharina Schaffner had quoted me extensively in her new book EXHAUSTION and was 'trying hard to present us in unflattering ways'. I googled and found a Times Literary Supplement review* in which the reviewer had said:

In a chapter called 'Mystery Viruses' Schaffner frames Nasim Marie Jafry's semi-autobiographical novel The State of Me (2008) with a nuanced exploration of the controversial diagnoses of chronic fatigue syndrome, myalgic encephalomyelitis and post-viral fatigue syndrome. The author shows how and why both sufferers and medical researchers have so much invested in alternative somatic and psychological explanations'.

I was, of course, intrigued and got a copy of her book. I figured the truth would lie somewhere between 'unflattering' and 'nuanced'. Sadly,  nuanced it is not. Schaffner, while attempting to appear empathetic has, consciously or unconsciously, managed to misrepresent me in several ways - including misquoting me - and 'Mystery Viruses' is - wearily and, perhaps, unsurprisingly - little more than a puff piece on Professor Simon Wessely. He's referenced in 80% of the bibliography along with the dreadfully cruel social historian Edward Shorter (I guess he deleted this post).  Schaffner can see why ME sufferers would be offended by the latter, but nevertheless finds him 'thought-provoking' and gives him generous room in her chapter.

Bizarrely, not one reference is made by Anna to any ME biomedical researcher by name - as if they simply don't exist. Since she's a reader of my blog,  she could have, for example, mentioned Stanford's Professor Jose Montoya, specialist in infectious diseases, whom I had the great pleasure of meeting briefly last year. Montoya wants USA medical institutions to apologise to ME patients for the way they have been treated (the Norwegian government has already apologised to its sufferers - an anti-cancer drug Rituximab is currently under trial there for ME). Schaffner acknowledges ME is a controversial diagnosis, but sets up a false opposition of scientists against patients. Let's not  forget in early 2015, the Institute of Medicine's (USA) definitive report which - after examining 9000 research papers - concluded that ME is not psychological.  Research in the USA has been energised lately through the National Institute of Health. And the first European ME tissue biobank opened in London in May. (Interestingly, ME sufferers in Scotland are not permitted to donate blood.)

The task ahead is to unlock the mechanism of this poorly understood illness. That is all that is important. But Anna insists, instead, on embracing the dying narrative of UK psychiatrists, which casts ME sufferers as ungrateful militants.  I do wonder is the reading public not bored with this particular narrative by now? ME sufferers have  horribly diminished - often ruined - lives, but certain writers are still feting Simon - who apparently left the field fifteen years ago - by putting him at the centre of the narrative. Why do they persist in their misguided praise? Why are they not following the science?

Anna says in her introduction that 'works of fiction, in particular, can grant us precious experiential insights into how particular physical conditions...may feel', and yet on reading my novel appears to have wilfully misunderstood why ME sufferers are rightly angry with Wessely and others, who stubbornly push their harmful biopsychosocial theory,  for which they have not a scrap of evidence. When they suggest ME sufferers are perpetuating their own illness with aberrant beliefs, these psychiatrists are simply acting out their *own* beliefs. Really, think about it - how can 250,000 ME sufferers in the UK alone - former lawyers, doctors,  students, dancers, engineers, artists, teachers etc - all be keeping their own hellish symptoms going by faulty thinking? A kind of synchronised somatising? It's utter nonsense.

Schaffner has  not, I assume, accessed any of the medical sources I suggested, and gives a garbled history of the terminologies of ME and CFS: for the whole chapter she refers to 'CFS/ME' - the favoured label of UK psychiatrists. The rest of us talk about ME - or 'ME/CFS', if we have to. (It is admittedly confusing as in the USA, true ME is referred to as CFS, which is where the name originally came from in 1980s. Many researchers use the name CFS.)  Dr Daniel Peterson - involved in the Lake Tahoe outbreak in 1984 - speaks up here in support of the name ME, acknowledging that the label CFS hugely trivialises the illness.

However, during the 1990s, Simon Wessely and others effectively tried to 'disappear' Ramsay-defined ME, the illness I have, merging it with CFS, using the much broader Oxford Criteria (1991), which can include patients who *do* have a psychiatric basis to their fatigue. The CDC (Fukuda) 1994 criteria in USA that Anna refers to also have problems of being too broad, but she is, doubtless, unaware. Leonard Jason, professor of psychology, is excellent on criterion variance and the importance of case definitions. Ramsay-ME has by definition more severe physical impairment. The problem is that no one is speaking about the same illness and UK psychiatrists seem happy to conflate them. Most journalists writing about ME/CFS have no idea of the many different criteria. It's an unholy mess. People are misdiagnosed as having ME when they actually have CFS. It was recommended by the National Institute of Health in 2015 that the Oxford Criteria for CFS be retired as they could harm research.

This is how and why nonsense about ME is written and how a dysfunctional narrative has been perpetuated. The wrong people have been controlling the story. And younger, naive writers pick up the baton. Listing the symptoms of ME, Schaffner includes 'a perceived sense of effort', making her bias - and ignorance - obvious early on. Post-exertional malaise - described in this short film by Dr Mark VanNess -  is listed in the Institute of Medicine (2015) report as one of several  core symptoms, objectively verifiable:
 

          Post-exertional malaise (PEM)

PEM is worsening of a patient’s symptoms and function after exposure to physical or cognitive stressors that were normally tolerated before disease onset. Subjective reports of PEM and prolonged recovery are supported by objective evidence in the scientific literature, including failure to normally reproduce exercise test results (2-day cardiopulmonary exercise test) and impaired cognitive function after exertion. There is sufficient evidence that PEM is a primary feature that helps distinguish ME/CFS (SEID) from other conditions.

 *

Before moving on to discuss my novel, Schaffner writes, How does living with chronic fatigue actually feel?' - disrespectfully disregarding that ME is not 'chronic fatigue' and that neither I nor my character Helen Fleet live with chronic fatigue (I had pointed this out to Schaffner in our exchange). I live with a poorly understood neuroimmune illness, which has many very disabling symptoms, severe fatigue being only one. These other hellish symptoms are described in detail in The State of Me, but Schaffner does not seem to think they are worthy of discussion. (Of course, since she has appropriated ME -  via my novel - for  a monograph on exhaustion, it would not suit her to look at the many other symptoms.)

My character Helen Fleet is no saint - I wanted her to be flawed - ill people are not saints in real life or fiction. And Helen Fleet is not me and I am not Helen Fleet, but all the medical procedures are true. Schaffner, at first, seems to empathise with Helen, recognising her humour in helping her cope with a life of chronic illness. But she skips over the utter hell and shock and heartbreak of being largely bedbound, aged twenty, getting a diagnosis of ME - wrongly referring to Coxsackie B4 as 'a rare virus' - it isn't - and failing to mention that a cluster of people became ill with ME in the west of Scotland at this time (described in Melvin Ramsay's text, which I recommended to her).

More tellingly, she ignores  the fact that Helen is diagnosed by a consultant neurologist. She ignores the 'full house of abnormalities', the abnormal muscle biopsy and EMG. And goes on to ignore the (albeit experimental) immunotherapies Helen has: the plasma exchange, the anti-viral drugs, the ACTH injections, the vitamin C/magnesium drips, the evening primrose oil clinical trial. Of course, she is constrained by how much she can quote without permission, but it is bizarre she would not reveal to her readers that my character is diagnosed in a neurology clinic by a consultant neurologist, as I was. Of course, that might undermine her 'Wessely as saint' narrative later on, the Wessely who has stated: 'Like it or not, CFS is not simply an illness, but a cultural phenomenon and metaphor for our times'.

Schaffner then starts to dabble in amateur psychology examining the causes of my own illness, by psychoanalyising my character Helen. She suggests that because fictional Helen's fictional parents got divorced, that maybe Helen (and I) are suppressing painful childhood emotions. Her audacity is quite something, others have commented on how intrusive, not to mention, unethical this is. She can simply not understand why Helen is so against a psychiatric explanation of her illness. She seems to forget that Helen's story is informed by my lived experience of ME since the age of 18, along with a consultant neurologist's diagnosis in 1984, and mounting, incontrovertible biomedical evidence that ME is physical. But this is not quite enough for this young academic - she appears to know more than me about my own illness. Perhaps she would like to track down the others who got ill in the west of Scotland post-Coxsackie virus and psychoanalyse them too?

Schaffner goes on to highlight Helen's 'scathing' attitude  towards those who suggest her illness may not be physical in origin. Her empathy for  Helen evaporates and she gets to what she really wants to say, no longer literary critic but judge and jury, exploring the issue of how I/Helen/ME sufferers dare to be scathing about psychiatrists (who don't believe ME is physical), in particular, Professor Simon Wessely. You have to wonder, did she even read my novel or did she just flip through it looking for extracts that would suit her chapter?

She describes Simon as 'one of the most important CFS researchers in Britain' - I beg to differ - he has conflated CFS with ME and caused utter chaos since the early 1990s. Schaffner is breathtakingly careless, though, as she appears keen to merge my anger at Wessely with those who have allegedly 'targeted' him (the threats narrative was tirelessly explored in UK media). She may like to know that Simon Wessely and I exchanged several long emails a couple of years ago (polite but ultimately fruitless, in my opinion). And I certainly do not regard myself as being scathing, I'd say my reaction, under the circumstances, is rational and healthy. Schaffner has quoted selectively from my blog, but she could so easily have read all the research that I post and tried to learn, but instead she took the easy option, recycling the weary, psychogenic narrative that the London media loves to recycle again and again. I guess she missed this quote from a journalist in 2007: 'I’m sure there is a lot of psychiatric literature on how denying another person’s reality triggers all sorts of deep hostile responses'. And I guess she also missed Simon's open letter conversation from 2012 with the Countess of Mar, a long time advocate for people with ME.

Anna also writes: 'Jafry not only wishes that doctors who suggest graded exercise or CBT would fall ill with ME themselves...'. This is simply  dishonest. I often say - as Helen does - let those who don't believe that ME is a physical illness have it for a day or a week, then they will soon believe.  I say let them try graded exercise when they have experienced severe ME (they wouldn't, they couldn't). I say that graded exercise (GET) is dangerous for people with ME, because it is.  Nowhere have I said I want doctors who recommend GET and cognitive behavioural therapy (CBT) to get ill themselves. But Schaffner  happily misrepresents me. Well-meaning doctors who are in the dark may recommend these therapies because the hugely flawed NICE guidelines tell them to. There was, in fact, an excellent article recently in the British Journal of General Practice, highlighting the fact that GET and CBT can cause harm.

Schaffner seems largely unaware of the abuse and neglect that people with ME have suffered, the unrelenting, detrimental nonsense in the press. I recall five or six years ago someone on a forum saying that ME sufferers just wanted to fucking stay at home and eat pot noodles all day. And an anonymous doctor suggesting 'lead in the gullet' was what was needed. This kind of online  abuse is not unusual. It would be unacceptable for any other patient population to endure this.

Neither, of course, does she acknowledge the ongoing problems with the PACE trial (which underpins GET and CBT as safe, effective therapies). This is the trial that used the Oxford Criteria;  the trial where you could be more ill at the end than at the beginning and still be considered recovered; the trial that cost £5 million pounds. Schaffner tells us blithely that  GET and CBT are  'moderately efficacious' for the relief of symptoms. I think those who have gone from mild to severe ME after graded exercise would disagree. **We are still awaiting the results of the outcome of the QMUL tribunal in May over the PACE trial and its refusal to share data. But because the trial was spun so successfully in the media, no one is really aware of the problems, apart from ME sufferers and the scientists who are challenging The Lancet over its publication of PACE in the first place.

I often say it can take a decade to adjust to a life with severe ME, we do everything in our power to recover, to keep hold of our lives, but the illness is bigger than us. This is not nihilistic, it is fact. We relapse severely when we push ourselves; we learn to pace, it is how we cope, how we endure, how we survive. We also have to cope with the emotional stress that comes with physical decline. Our families suffer as they watch us, helplessly from the sidelines. They too have lost a daughter or a husband or a mother or a brother to this hellish illness. Yet, on top of the physical hell - and it is hell in its acute/severe form - we as an ill population have to face these ongoing, irrational claims by a group of psychiatrists. I honestly don't know how I'd have coped when first diagnosed had I been subjected to those who arrogantly  tell us that pacing/resting is counter-productive, and who promote GET and CBT. I count my blessings I was diagnosed a good seven years before these particular psychiatrists dominated the narrative, before they controlled the story. Their advocating CBT, of course, is not to help us cope, as with other physical illnesses, it is to rid us of our false illness beliefs.

I'd confidently say that all ME sufferers, regardless of severity of illness, have been neglected or derided at some point by someone somewhere, but there is a truly invisible, neglected group: 25% of  patients are so severely ill, they are housebound/bedridden for decades, they don't make any improvement at all. There are patients who tragically die.  What have these 'CFS' psychiatrists done for the most severely ill apart from cast doubt on their psychological health?  It's scandalous.

As I said at the beginning, Anna has misrepresented me in several ways, consciously or unconsciously, though no doubt appearing nuanced to those who know little about ME. I think perhaps the most ludicrous sentence she has written is:  'In her view, the cardinal symptoms of of ME, are post-exertional malaise, or post-exertional neuroimmune exhaustion, which are caused by viral triggers'. 

In my view? Dear god.

And while I find it both amusing - and somewhat impudent - that she questions myself and the many, many ME sufferers and advocates who dare to challenge the authority of UK psychiatrists, I'm not sure if she's being incredibly naive or simply disingenuous. She has, of course, been heavily influenced by the never-ending spin coming out of King's College. It's a little disappointing, but she is certainly not the first and no doubt won't be the last to appropriate ME as a chapter for her book (ME is the 'go to' illness if you need a chapter) with no real curiosity for truth. I'm glad she used extracts from my novel, hopefully others will now read it, but in doing so she demonstrates a lack of control in her own narrative. She is a literature scholar, after all, not a judge of how patients should respond to inappropriate and harmful treatment.

While Schaffner finds it 'ironic that Wessely should have become such a hated figure in the CFS/ME community', I find it 'ironic' that her book is published by Columbia University Press, which states: Columbia University Press seeks to enhance Columbia University’s educational and research mission by publishing outstanding original works by scholars and other intellectuals that contribute to an understanding of global human concerns. In early 2015, Mady Hornig and Ian Lipkin, both highly respected ME researchers at Columbia University, had this to say: Immune Signatures in Blood Point to Distinct Disease Stages, Open Door to Better Diagnosis and Treatment. But as I said before,  Anna mentions not one single biomedical researcher by name. They are not important in her landscape.

*

I can see that the narrative of ME is a morass from the outside, but those who really know, who really understand are patients such as myself who have lived through the politics, and seen the embedding of psychiatry since the 1990s, the very harmful conflation of ME with fatigue. In her cultural history of exhaustion Schaffner could have done something different, she could have explored why a group of doctors is clinging to an outdated model of ME, a veritable sinking ship, she could have asked why on earth this is happening. But she didn't. In 2016, almost thirty-three years after my own diagnosis, it's chilling that the psychogenic narrative of ME is still being given time of day. All that should be being discussed is biomedical research. Anything else is redundant and indulgent. It is we sufferers and serious biomedical researchers who should have control over the story.

*I've since had some emails with the TLS reviewer, who is a cultural historian - he was respectful and empathetic - while we still disagree on some points - and I think has learned more about the politics around ME.

** I see that QMUL has been ordered to release the PACE trial data. 

And here is info about the recovery data being sought.

*** And on re-analysis, the Agency for Healthcare Research and Quality (AHRQ) has declared the PACE trial findings to be invalid - GET and CBT are ineffective for 'ME/CFS'. Oxford criteria, once again, found lacking.

**** Blog from  Prof Vincent Racianello (immunology) on The Lancet/PACE circus, 29 August 2016

Do No Harm by Henry Marsh; & another doctor turned writer (Suzanne O'Sullivan, who believes ME is psychosomatic) *updated

I'd read a couple of chapters of Do No Harm before I realised that Henry Marsh is the subject of Geoffrey Smith's 2007 award-winning documentary The English Surgeon, which I saw four or five years ago. The film first came to my attention because at that time a production company was planning to use my novel as the scaffolding of a documentary about ME and Geoffrey Smith was the director (it fell through, as these things do, and the film seems now to have halted). I warmed very much to Henry Marsh in the documentary and I love him again in Do No Harm: his humility and self-deprecation shine through his brilliance as a surgeon, he is honest about his faults - he can be short-tempered and vain. He mocks himself for getting annoyed at having to queue at a supermarket check-out when he is an important neurosurgeon. His gorgeous, pared down prose reflects a surgical precision, he says what has to be said, no more, no less. The details of the neurosurgery he practices can be hard to read, I grimaced more than once, and while the technicalities are fascinating,  it is Marsh's humanity and wry humour that makes the book so readable. A doctor who admits wholeheartedly to the luck that is involved in a complicated operation succeeding or failing, a doctor who admits to his own mistakes and can't bear to think of the patients who have suffered at his hands. My favourite line is when he describes how important it is for doctors themselves to experience the anguish of being an angry or anxious relative (or patient) - his baby son had a, thankfully, treatable brain tumour: Doctors, I tell my trainees with a laugh, can't suffer enough.

I often think that doctors who have experienced illness themselves  make better doctors.

*

Not all doctors can write although the publishing world seems awestruck when they do. A new book came to my attention at the weekend by Suzanne O'Sullivan, she has been at Hay promoting It's All in your Head: 'True stories of Imaginary Illness', and the papers have had interviews and extracts. The Sunday Times reported that she controversially thinks ME is psychosomatic. So there you go, a doctor I've never heard of, her opinion slips in like a wee sharp knife - I'm hardly going to warm to her. Still, I can admire good writing even if I dislike the writer's opinions, but the extract in the Guardian is plodding and dull, this happened and then that happened, clichés sprinkled here and there, my interest flagged. And the subject seems derivative, a mix of Oliver Sacks (whose writing I loved) and Elaine Showalter (the horror, the horror!).

Just imagine for a moment you had ME and you were referred to this neurologist, what would she say to you, that it is all in your mind? My consultant neurologist ordered a muscle biopsy and EMG in order to confirm suspected abnormalities, but this of course was pre-'CFS' days (nowadays, you can apparently google 'chronic fatigue', pop down to your local fatigue clinic to get a diagnosis of ME, then get better in a few hours after the Lightning Process, this is one journalist's experience - and he actually confirms O'Sullivan's suggestion that some patients are ill because they google symptoms, he refers to himself as a prolific 'cyberchondriac'. This, of course, is not the experience of patients who have actual ME).

These doctors, such as O'Sullivan, who continue to deny that ME is a physical illness are making a choice not to listen, to ignore the research and abundance of literature, it is very worrying. Their position is  untenable, but still they hang on.  Who benefits? - not patients with ME, that's for sure. The ME Association has just published a report on the harms of CBT and GET as primary treatments for ME, I wonder if it will make a blind bit of difference.

First, do no harm...

Precisely.
_________________________________________________________________________
*Update 

Suzanne O'Sullivan's book does indeed include a chapter on 'ME/CFS' - 'Rachel'.  It is,  unsurprisingly, manipulative and incoherent. In Suzanne's world, you google ME and decide it matches your symptoms and that is what you have got.  (She also patronisingly said on Radio 4: 'I don't think the internet has been so much of a problem for doctors as such, I think it is a problem for patients and people.')

And this may, in fact, be the most revealing passage in the chapter:

'In my early years training in neurology I encountered many patients with CFS, but more recently neurologists have distanced themselves from this disorder and patients are more likely to seek help from immunologists or endocrinologists. I do not currently see patients for the purpose of diagnosing or treating ME/CFS, but many of my patients with dissociative seizures have a history of ME/CFS, and there is something very interesting in that fact alone.'

There is something very interesting in the fact that Suzanne does not seem to have actually met (m)any patients with classic Ramsay-ME (in 1990s when she was training the Wessely/CFS school was just taking root). Rachel, the girl in her book with ME/CFS is, to my mind, an artificial construct, a composite character with the 'behaviours' of ME patients - internet diagnosis, increasingly helpless, 'over-helpful' parents - that the Wessely school adores. Rachel rejects the psychiatric treatment offered her. We never find out what happens to her, though Suzanne says: 'The impact of our emotional well-being on our health is not a trifling problem. I only wish I could convince Rachel of this'.

Her apparent lack of contact with patients who actually have ME - coupled with not following the science - would perhaps explain why she felt that including ME in a book of imaginary illnesses was acceptable. But hallelujah! Suzanne is still at pains to tell us that she does believe we are ill, honestly, she believes us, but we just have to be good and understand that it is all in our heads.

I have reviewed the chapter on Goodreads (and Amazon).

The ME Association has complained to the Times about David Aaronovitch's review of the book - and his re-assertions - yawn yawn - that ME is probably psychosomatic. Invest in ME has also complained to The Times. How many hundreds of hours have we had to waste challenging these oafs?

How many hours?

Art & catastrophe, & BBC Alba documentary, repeated on 6 and 13 January

The BBC Alba 'Toxic Tiredness' documentary from January 2012 is being repeated tonight at 9pm*. The Gaelic parts are, of course, subtitled. I previously blogged about both episodes here (part one) and here (part two). I appear in episode one right at the beginning looking like a bag lady, with my usually rather funky prescription sunglasses - they filmed us at weird angles outside for a few shots, the effect is alienating and disorienting, maybe that was the intention. And then at approx - 2.30, 7:30, 13, 18:30, 24, 29, 40:50 and 48 mins (I talk about the novel here and read an extract).

And Professor Peter Behan, the consultant neurologist who diagnosed me in 1983/84, appears in episode two, 35 mins in. He is magnificent. I especially liked:

  '... there is an essential biochemical component to the illness which needs to be elucidated, and research should be along the grounds into these illnesses rather than dealing with psychological talk the talk nonsense'

Dr Charles Shepherd  of the ME Association - also diagnosed by Peter Behan -  makes a great contribution too (though I don't necessarily agree with *everything* he says). The early-mid eighties was still a hard time to get a diagnosis, it took me almost 18 months, but  the psychobabble that we know today was yet to reach its dizzying heights of obfuscation -  this conflation of  serious neuroimmune illness with 'chronic fatigue' has, as we know only too well, done untold damage. We can only hope that science is now progressing, albeit slowly, unfettered by the hijackers. Here's to some decent biomedical research in 2014.

* Part 1 repeated Tuesday 7th at 10pm and soon on iPlayer

*

And I came across these wonderful photos by Penny Clare the other day on the Centre for Medical Humanities blog. She took them while severely affected and bedridden. I particularly like A fingernail celebrates New Year (I don't want to breach copyright so am not posting any photos here).

 More of Penny's photos can be seen on the excellent Phoenix Rising site.


For me, these photos highlight the link between creativity and illness, we are 'forced' by the illness into places we never knew we would go. We are still ourselves but catastrophe has given us a different way of expression. I often think of my novel/fiction as  my response to catastrophe. Writing often is.

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.

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'.

Why do we read fiction?

Can reading literature make doctors better doctors was one of the questions posed at a 'Dissecting Edinburgh' event last month. It made me think of James Wood's How Fiction Works where he describes how in 2006 a Mexican municipal president decided that his police force should be prescribed reading certain novels - One Hundred Years of Solitude was on the list -  to make them 'better citizens'. And psychologist Keith Oatley speaks of fiction as a 'kind of simulation that runs on minds', and argues that novels can help us understand the world better. I'm not sure if  doctors *can* 'learn' empathy from fiction (I tend to think you've got empathy or you haven't) but  it's certainly  interesting to think of why we read rather than the more often discussed why we write. Both questions are answered by Portugese writer Fernando Pessoa: 'Literature is proof that life is not enough'. (I came across this gorgeous quote a couple of months ago in Pascal Garnier author's note in The Panda Theory. It is often in my head now.)

I happened the day before yesterday to be reading the quaint and bizarre short story 'Rab and His Friends' (1859) by Scottish doctor John Brown  featured at the Dissecting Edinburgh event - Rab is the name of a dog belonging to a man whose wife has incurable cancer - when I learned that Iain Banks is terminally ill. I had a lump in my throat. I remember reading The Wasp Factory in a friend's flat in Aberdeen in eighties. And how crazy we all were for The Crow Road in the nineties. I recall it was dramatised too. Such sad, sad news.

Disability and culture

Interesting podcasts/discussions on cultural representations of disability from Centre for Medical Humanities.  I've just listened to Beyond the ‘Narrative of Overcoming’: Representations of Disability in Contemporary French Culture Sam Haigh (University of Warwick).

A wee girl that breaks my heart, & googling viruses 30 yrs later

There are so many images in a week that can break your heart, but this wee girl in Pakistan selling flowers has stayed with me.

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An Edinburgh University book group is doing The State of Me and has invited me to chat to them. The chapters they have selected got me thinking back to the whole onset of illness, and I've been googling Coxsackie B4 (marvelling again how easy it is now to get information about an illness, about anything, back then it really was a case of going to the library, we knew nothing. And I still recall reading that Coxsackie could cause paralysis in young mice). Am fascinated to read about Dr John Richardson's work on ME and enteroviruses in north of England, am surprised I didn't know about him and want to order his book. The paragraph that stands out for me in the 2002 BMJ piece is:

Early on John believed that ME was an illness that could follow directly from a Coxsackie infection and one that was capable of altering the whole personality and abilities of someone he had known for years. The idea that it was just depression or hysteria, a psychoneurosis or “all in the mind,” he found not only ludicrous and cruel, but also dangerous, and his records contain several examples of suicide. When patients told him that they had grown tired after taking vigorous or progressively “graded” exercise and found that they had to pay for it by being much worse for the next day or so, he believed them and sought other methods of treatment. 

And it was after speaking to virologist Dr Eleanor Bell in Glasgow - referenced in the above article - that my mother got my referral to Dr Behan in  late 1983 - a year after I had become ill (I was by then nineteen).

And from Norway we have this recent fundraising video for  Rituximab research at Haukeland Hospital, featuring doctors and politicians. And in UK we have the gibberish of PACE and pretend clinics for ME. Thank goodness for the annual  Invest in ME international conference, coming up in May.

And here is more up to date info on ME and implication of enteroviruses (Dr Chia's work)  from the CFS Patient Advocate's blog  (the blog author's daughter has severe ME).

Dissecting Edinburgh; dissecting nonsense

I have only done readings very occasionally so am very pleased about this (free!) event in a couple of months' time, part of the 'Dissecting Edinburgh' series at Surgeon's Hall, Edinburgh - 'Literature and Medicine in the Scottish Capital'. I will enjoy thinking back to the process of writing and editing the novel, much of which I did in bed, getting red felt pen on my pillows. I very much hope those who are running the new  'ME-CFS' Astley Ainslie Clinic in Edinburgh will attend - and those in the Scottish government who are funding this 2-year pilot project. The new 'CFS-ME' clinic or 'ME-CFS'  - or whatever thay happen to call it on the day - charmlessly and ludicrously continues to conflate neuroimmune illness with mental illness. This invented hybrid-illness label benefits no one, but still the biopsychosocials persist, in spite of the mountain of biomedical evidence worldwide; in spite of the Scottish Good Practice Statement caveat that ME patients claim to be made worse by graded exercise; and in spite of the PACE trial being unmasked as la la la nonsense.

And am aghast at the wording in the job description last year for a psychologist at the new 'CFS-ME' clinic, (you have to scroll down), which someone on Twitter sent me: This caseload will include a proportion of complex cases eg. Patients who have experienced previous sexual abuse, have active suicidal ideation or have pre existing mental health problems.

Do people with MS and lupus also usually share clinics with those who have 'complex medical histories, suicide ideation and experienced sexual abuse'?  I think not. Of course such patients need huge support too, but why are they told they have a neuroimmune illness when they don't? (And I would bet thoughts of suicide come to anyone dealing with serious, abject chronic illness at some point, whether it is ME or not, and that the proportion of those with ME who have also suffered abuse is no higher than any other neuro/physical illness.) As has been said a million times - and will continue to be said - it  is the massively flawed criteria (yawn yawn yawn) that result in over-diagnosis of ME in the first place. The people behind setting up this clinic obviously haven't read the International Consensus for Criteria on ME (2011). Or have chosen to ignore it (one  suspects they ignore a lot of what doesn't fit with ther flawed views). And they honestly wonder why people with my illness are 'hostile' when faced with this crap?

And the wording on the patient leaflet is simply bizarre - only patients who have 'been given, and accepted, a diagnosis of ME-CFS' are invited. 'Accepted', what on earth does that mean? The GP leaflet is even worse: We will not be able to consider domiciliary visits or extremely entrenched, complex patients. So basically they can't help severely ill, housebound/bedbound people with ME, but only those who are mobile and open to brainwashing. The leaflet states that the service will be over-subscribed so not everyone referred will be accepted, but not to worry, I won't be asking for a referral any time soon (being entrenched and all.) And note the symptoms, 'persistent, excessive tiredness or fatigue', nothing about post-exertional malaise or post-exertional neuroimmune exhaustion - the cardinal feature of ME - or viral trigger. So GPs are unwittingly (or not) colluding in the whole hybrid-illness charade.

I used to be comforted by the fact we didn't have any of these GET/CBT - pretending to help but actually challenging false illness beliefs - clinics in Scotland. But alas, the Wessely school has come to roost in Edinburgh. Sadly, NHS Lothian are myopic in the extreme if they think people with my illness will be helped a jot by this. What a waste of money! Anyone and everyone with idiopathic chronic fatigue is simply thrown into the 'ME-CFS' bucket. I'm so glad I didn't have a crystal ball in 1983, sitting on the orange chairs of the neurology clinic in Glasgow, so wretchedly ill. Really, is it too much to ask that in 2013 we can have just an ME clinic for people with ME? Apparently so. (And how about offering something useful  like therapeutic massage instead of  goddamn aerobics. Then I might go.) I am so very, very, very tired of this adding on of any and every unexplained fatigue handle to ME; it's a kind of blasphemy. This clinic is a fatigue clinic, nothing else, so please let's not pretend it is for my illness (Ramsay-defined ME for anyone who is curious).

Anyway, back to the writing: the day Helen Fleet is diagnosed in 1983 by consultant neurologist, chapter eight of The State of Me:

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A week before my twenty-first, I was summoned to Bob’s consulting room for the second time. He was expressionless as I sat down on the orange chair.

You have a whole range of abnormalities, he said. Your muscles aren’t producing energy normally.

Why not? I said.

We think you have ME, myalgic encephalomyelitis. It’s a post-viral syndrome, triggered by the Coxsackie virus, in your case. There’s no cure and it can last for five years. We’re doing some clinical trials which we would like you to take part in. We’ll be in touch. Can you ask your mother to come in now?

I came out and Rita went in. Someone had left a Daily Record on the chair next to mine. I picked it up and looked at the front-page photo of Princess Diana with her six-week-old baby.

When Rita came out of Bob’s room, her eyes were watering.

On the way home in the car, I hoped we’d crash and that I’d be killed instantly and Rita would walk away without a scratch. I kept thinking of the David Bowie song ‘Five Years’: . . . five years left to cry in . . . steady drums, louder and louder and louder . . . five years, stuck on my eyes, high violiny bit.

*

Helen has a diagnosis! Hurrah! Hurrah! Hurrah! She has blah-de-blah-de-blah, it’s official! She’s got Malingerer’s Elbow! She’s chronically fatigued! She’s a yuppie with flu! Whatever your point of view, she’s fucked.

 *

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.

And back to the event (sorry, but this CFS nonsense in Edinburgh is just upsetting and distracting). There are two other writers, Tracey Rosenberg and Alison Summers, also reading,  about cancer and Pick's Disease, respectively. I don't think I've ever been  inside  Surgeon's Hall, trying not to think about how big it might be, I imagine a big draughty lecture hall, but maybe it'll be a wee cosy room, and I've told them I'll need to sit down to read. More than ever the truth of this illness needs to be told, and my novel does just that. I am delighted to  be part of this Medicine and Writing event.

A novel doing its job

I recently came across the Edinburgh Medicine in Literature Reading Group and sent them a copy of The State of Me. Was delighted to get an email yesterday from one of the members saying she had loved the writing, couldn't put it down and that she had learned a lot about ME. I think they will discuss it at their book group in the New Year and I'm invited to go along.

The novel is doing its job.

Doctors & patients & writers ...

I attended a talk mid-week on doctors who also write, a hop and a skip from me. It was a long talk, almost two hours, and I found it so hard to concentrate towards end but it was very enjoyable hearing these three medics talk about their dual lives. You do not come across writing doctors very often and I was especially interested in their concerns about self-censorship when they also have such important social roles as doctors. During the Q&A someone referenced Virginia Woolf's essay 'On Being Ill'  - she wonders why there is so little fiction written on illness - and it seemed a good point to mention The State of Me. I said I was a patient turned writer and that self-censorship can be an issue for all writers. These doctors were all charming speakers - two are GPs, one is a child psychiatrist - and I wonder what their thoughts were when I said I have ME and have written a novel about it, that I was passionate about education through fiction. I did not mention my name or the book's title, but I wish now I had taken copies to give them.

After last week's travesty of science - and Prof Malcolm Hooper has written, as always, an eloquent response - I really have  no idea how we fix the distorted narrative. I think we have to look to the rest of the world, international biomedical research.

I have remembered a BMJ podcast from 2010 where Simon talked about ME. (This was during XMRV hype -  I always remained neutral, if XMRV was the answer, great, if not, let's move on to next thing (and we know how that all turned out). However, I have personally known since 1983 that my illness is connected in some way to my immune response to the Coxsackie B4 virus. The often not very bright media now tries and twists it to make out that it's only since XMRV that patients/researchers have linked ME to a virus. And that no XMRV = no virus. Not so.)

Anyway, in this podcast, Simon speaks around 4.25 mins in about the broad/narrow definitions of the illness, which of course is the whole crux of the conflation and chaos, though he does not seem too concerned with the chaos. The patients Simon sees/researches apparently get better with CBT and graded exercise therapy (GET), whereas those of us with my illness get worse with exercise, and I will keep saying this to those who will not listen. It struck me also that he had spoken back then about the need for other researchers to get involved, and 24 mins in, sounding very relaxed, says: 'Other disciplines should get more involved because CFS is under-researched' ...'and you'd be surprised to learn is actually  a very enjoyable and  very rewarding area of research.'

Very enjoyable and very rewarding.

No mention of the 'acute hostility and bravery' that last week earned him the John Maddox prize. The acute hostility - and I am not questioning that threats were made, I am sure they were, and no one would want to condone this - was, unnecessarily, ramped up to unbearable degrees  last year by a hysterical media, which  resulted in an entire patient population being (further) demonised. We can only wish  that Simon had perhaps practised some self-censorship in his dealings with the media.

Of course, if you actually *know* about the politics surrounding this illness  the Maddox award video seems like a spoof, like something from Drop the Dead Donkey - a newsroom satire from 90s -  an observation made by my mother. They're all daft, she said, shaking her head when I showed her. Bloody bastards, said my stepdad - who now has dementia - and later came into the living room with a pan on his head  - he loves joking with hats - but he has always been a source of great support to us throughout my illness, especially at the beginning, the utter, utter hell.

Am highlighting again this young scientist's blog where an informative discussion went on after the Maddox prize - it makes a change to have a thread where PWME are not drowned out by obnoxious, hostile, uninformed voices. *And then there is another young medic who exuberantly denounced PWME for 'stigmatising mental illness' and told us we have to grow up. He has obviously been fed the Wessely school narrative, and nothing else, but I  hoped he would be willing to educate himself and learn there is another narrative to explore.

After my novel came out in 2008 I breathed a huge sigh of relief, I honestly thought I'd never have to defend my corner again, I felt my job was done. But when we are continually assaulted  - and it *does* feel like assault - by twisted narratives and half-truths, we have to speak up, though it is truly and godawfully  sapping.

We have to speak up. These are our lives.

*I see this page has been removed, perhaps the young medic at www.thetwentyfirstfloor.com had a rethink about being so rude about an illness he clearly knows little about...