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.

Seven Novels and Stories That Prove Fiction Can Grapple with Illness

A friend came across this, a nice review of The State of Me from 2021 on Electric Literature. The review is included in a piece called: 7 Novels and Stories That Prove Fiction Can Grapple with Illness:

 

'Based on the author’s own experience with myalgic encephalomyelitis (also known as chronic fatigue syndrome), The State of Me is unadorned autofiction that follows the protagonist, Helen Fleet, from her diagnosis at age 20 through the aftermath of her illness. Jafry has described her novel as “the antithesis of sick lit,” and indeed, it would be impossible to describe Helen’s experiences as anything approaching romantic. But as much as the novel is an honest, sometimes ruthless exploration of chronic illness, it’s also a story of everything else that might populate a person’s life: love, sex, relationships, and all the “life bits” in between. Helen’s voice, quirky and sardonic throughout, makes for an immersive and compelling read.'

 

The whole article is here.

Hospital room reminded me of Benidorm

The NHS so broken round the edges is, of course, still excellent in a crisis. I  found myself suddenly in hospital for a week in the middle of the month, and  after being out for five days was sent back for an overnight. Got home yesterday. I had not been an in-patient since 1984 when I was in a neurology ward having an experimental plasma exchange as treatment for ME. This time I was in  a cardiology ward. The week was a blur.  I was mainly in a shared ward, I recall one morning, hearing a woman who had been admitted late at night tell the doctor  she did not have her small suitcase with her because she had lent it to someone and when it came back it smelled like a bonfire. 

On Monday, I was in a side room of my own for one night, I appreciated the privacy but it was bleak, reminded me of a Benidorm hotel in 1980s, hard surfaces, no comforts and a view of a car park. I had extra blankets but still needed my coat on top.

I had stopped reading about Gaza in hospital, though I periodically imagined what would it be like if we  were being bombed. Unthinkable. I made contact with a Palestinian friend I'd had at university in eighties, he grew up in a refugee camp in Jordan. I had not seen or spoken to him for over thirty years. I wasn't sure if he would get my message but he did. 

It was a joy to hear from him.

I am so very grateful to everyone in our NHS. I thought about what had changed since my last stay, forty years ago. They don't make visitors tea any more. And many of the nurses have tattoos. 

I gave the  paramedic a copy of my 2008 novel. My plasma exchange is fictionalised in there.

Autobiographical novel: 'a prosthetic voice' (Alexander Chee). And (films of) Guru Dutt

I recently dipped into Alexander Chee's collection of essays How to Write an Autobiographical Novel. I find reading about writing to be reassuring: you learn things that you already knew but didn't know you knew. It's the kind of book where you want to write down fragments and keep them close to your heart. Chee describes his first (autobiographical) novel as a 'prosthetic voice', which gives voice to those things too difficult to speak about, in his case, sexual abuse. His image of prosthesis is, I think,  quite brilliant.

And so while I wrote this novel, it didn't feel like I could say that I chose to write this novel. The writing felt both like an autonomic process, as compulsory as breathing or the beat of the heart, and at the same time as if an invisible creature had moved into a corner of my mind and begun building itself, making visible parts out of things dismantled from my memory, summoned from my imagination. I was spelling out a message that would allow me to talk to myself and to others. The novel that emerged was about things I could not speak of in life, in some cases literally. I would lie, or I would feel a weight on my chest as if someone was sitting there. But when the novel was done, I could read from it. A prosthetic voice.

The State of Me - hard to believe it was published ten years ago, its message as relevant today - wasn't for me a fictionalisation  about something too difficult to talk about, but rather a representation of the anger and injustice that people with ME have felt for decades due to a wilful reframing/misrepresentation of the illness by a core of the medical/political establishment. The novel had to be written, but the difficulties in writing it were much more the physical/cognitive challenges of ME than an inability to voice the subject. (I also, of course, faced the structural challenges of writing a novel that face all writers, ill or not.)

Chee's concept of  'prosthetic voice' does, though, resonate for me when I go to the project/novella which is partly about my late Pakistani father, the project that often has me thinking of Bernard MacLaverty's description of writing as 'a way of trying out different fathers'. This is exactly what I am doing - when I can - and something in me is a little broken the whole time. The theme of my novella is 'not knowing'.

It's fascinating to learn about writers/artists who would have been contemporaries of my father. I've just discovered Guru Dutt, an Indian director and actor, famous for Pyaasa, Kaagaz Ke Phool (Paper Flowers) and Chaudhvin Ka Chand. Dutt died aged only thirty-nine in 1964 from probable suicide, he had mixed sleeping pills and alcohol.  He had attempted suicide before. Knowing Dutt's life story made it even more emotional watching Pyaasa, the story of a shunned poet, who only finds success when he is (wrongly) presumed dead. And Kaagaz Ke Phool, a melodramatic tale of a director's flop (prescient as Kaagaz Ke Phool also flopped) - had me in tears at the end. Real tears rolling down my cheeks.  When we respond to films we are, of course, not responding to just the fictional narrative but to the narratives in our own lives. I especially love the framing of the film - the opening and closing scenes - with Suresh Sinha as an old man looking back on his life.

I thought of Saddat Hasan Manto and wondered if he had ever met Dutt in Bombay (Manto left his beloved Bombay for Lahore shortly after partition). When googling Manto and Dutt, I came across this review, which likens Guru Dutt's Pyaasa to Nandita Das's recent biopic Manto. Manto and Dutt certainly shared sensibilities, a concern for those in the margins, those disenfranchised, in Manto's case specifically those harmed by Partition (on both sides).

Manto was seven years older than my father. Dutt was six years younger than my father. All were in Bombay in 1947. My father was not working in film, or as a writer, he was a medical student, who had interrupted his studies to join the Indian Air Force during the Second World War. What these three  men would come to have in common was an addiction to alcohol, an addiction tragically implicated in all of their deaths. They were not old men when they died, Manto was forty-two, my father was fifty-three (I was eight). I fancifully allow myself to imagine the three of them meeting up in Bombay before Partition, wondering what they would have spoken about.

I've discovered that Nasreen Munni Kabir made a Channel 4 documentary  in 1989 called In Search of Guru Dutt. I have ordered her book on Dutt. The beautiful and luminous Waheeda Rehman appears in all three films mentioned above. I understand that she and Dutt had an  affair, which ended his marriage to Geeta Dutt.  Geeta Dutt was also the hugely talented playback singer for Rehman's songs. Geeta, I have read, had a breakdown and became alcoholic after Dutt's death. She died in 1972, leaving behind their three children, two sons and a daughter, Nina (Nina was just a baby when her father died). It is heartbreaking that Tarun Gutt, their eldest son also took his own life and Arun Dutt - who was involved in preserving his father's legacy - died of alcohol-related illness in 2014.

Having now also seen Chaudhvin Ka Chand I am left with a huge nostalgia for a period in Indian film-making in 1950s I did not even live through. I think the melodrama, the heightened reality, the muted gorgeousness of monochrome all tap into a process in my head and heart (the not knowing). The wonderful singer for Guru Dutt, in these three films, is Mohammed Rafi, who died aged fifty-five (though it is Hemant Kumar who sings 'Jane Woh Kaise Log' in Pyaasa). I also loved the actor 'Johnny Walker', who brought humanity and slapstick (much needed, to balance the sadness) in his role as the masseur in Pyaasa. I have read Johhny Walker and Guru Dutt were great friends in real life.

Reading Chee's essays and watching Dutt's films, something collided gently in me - it reinforced how important art and film and fiction are in understanding our lives, both for those who create the art and those who consume. Making the hard stuff bearable.

Ten years since The State of Me - publishing & illness (&Lionel Shriver)

This August it will  be ten years since the The State of Me was published. I'm still very proud of the novel and it remains my weapon in the fight for truth about my illness. A decade has been enough time for me to get over the roller coaster of the publishing process - and I have happily mostly forgotten the shock of it all. It was like a never-ending game of snakes and ladders. As a result of the liquidation of my indie publisher, the novel did not receive the marketing it should have done - but I remain very grateful my precious work was not lost in the drama and that HarperCollins rescued the book. This review by writer Elizabeth Baines remains one of my favourite reviews.

The path to being published was though unbelievably stressful and possibly contributed to my later developing idiopathic bilateral uveitis, a rare and serious autoimmune eye condition, where your iris attacks itself. It was a truly awful time, pouring steroids into my eyes, with the side effects of increased eye pressure, which also had to be treated (I'm sure ME was implicated and I still get six-monthly checks at eye hospital). I still remember at the time a friend telling me not to read  José Saramago's Blindness, which I, of course, did read.

If I were well, I'd no doubt be on to my third, or even fourth novel, by now, but I live necessarily in the margins of the writing world. It is often said you are only as good as your last book, but I'm happy to say that my novel is still being read quietly in the background, giving people pleasure and educating about ME.

I was delighted recently that Nick Duerden, a journalist and writer who has made a good recovery from his own very disabling postviral illness, messaged me and said he found the book 'very powerful and gripping'. He also said: 'You write fear, confusion and anger very well indeed. It moved me'. Nick is author of the recent memoir Get Well Soon (Green Tree, 2018). In the same week, Scottish film director and screen writer May Miles Thomas sent me a lovely card saying how much she had enjoyed the novel. I'd sent May a copy as a thank you for having the opportunity to watch her brilliant and hypnotic film Voyageuse free online on Vimeo.  Voyageuse made me think a lot about the layers of storytelling and how we (re)construct a life. I highly recommend this film.

I have been asked by Lighthouse Books to speak about writing and disability at a one hour event with other ill/disabled writers (I identify as chronically ill rather than disabled, the social model of disability does not in my view serve people with ME particularly well). I have said yes though I never know how I will be on the day, but am flattered as it's a decade since The State of Me was published. I've been shortlisted for a couple of short fiction awards since then, and had short non/fiction published here and there - details in sidebar - but because I live with ME, every minute of every day, I am the polar opposite of prolific (my novella-in-progress in 2015 is still in progress).

I do, though, know about the writing process - The State of Me took probably eight or nine years to write/publish in all - and I do, of course, know intimately about chronic illness. Writing is harder when you are ill. Everything is harder when you are ill. But writing (even as slowly as I do) sustains me. I would love to publish another book in my lifetime, I may be sixty by the time that happens, and I am not joking when I say that. Approaching my mid-fifties, I find I am thinking more about life and death and what we do in  a lifetime. I'm also more acutely aware of just how much my illness has thieved from me. (Interesting to read this interview with Elizabeth Strout who didn't publish her first novel until she was forty-two (I was forty-four). She went on to win a Pulitzer.)

*

Lionel Shriver has been off on one of her wee rants again - this time she is bemoaning the fact that Penguin Random House has a diversity drive. She petulantly writes:

“Thus from now until 2025, literary excellence will be secondary to ticking all those ethnicity, gender, disability, sexual preference and crap-education boxes. We can safely infer from that email that if an agent submits a manuscript written by a gay transgender Caribbean who dropped out of school at seven and powers around town on a mobility scooter, it will be published, whether or not said manuscript is an incoherent, tedious, meandering and insensible pile of mixed-paper recycling. Good luck with that business model. Publishers may eschew standards, but readers will still have some."

How can she be so goddam myopic and insecure? Diversity can only ever be a force for good (as long as we are talking about actual meaningful representation and not just tokenism). Do we really want to be reading the same novels about the same characters by the same people over and over again? There is an excellent response to Lionel's nonsense here.

I can honestly though say I have never felt discriminated against in terms of ethnicity (in fact, mixed race writers are all the rage) or disability, though one agent unprofessionally left her job without telling me, I imagine she did not realise just how slowly I wrote. It was a huge shock to me, but somehow I picked myself up and kept writing, slowly, slowly. Self-belief and the importance of bearing witness to the catastrophe of my illness was what drove me. But like many debut writers, I just felt constantly thwarted by the gate-keeping mechanisms of publishing in general. To be constantly told how good your writing was but because of marketing/pigeonholing there was no 'fit' for your book was soul-crushing. I think though pigeonholing is less rigid now, fiction and memoir are more readily blurred. The idea of what constitutes a novel is much more fluid.

When my novel was eventually published ten years ago, it had nothing to do with representation of illness/disability -  the notion of diversity was not being trumpeted back then. My novel was published in spite of my illness rather than because of. It was published on its own merit, as novels should be. Also, I'm mixed race but The State of Me has nothing to do with race - I'm sure Lionel would be very confused: a mixed race author with a white main character whose illness/disability informs the whole novel. Also, my character does not use a mobility scooter, but I had my first try of one a few weeks ago at the Botanics in Edinburgh and it was bloody liberating.

*

Illness brings a walling off, there are simply aspects of being a writer that are impossible for me. I cannot embark upon the circuit of readings and  festivals that is required of writers these days. The performance part is, for many, a significant part of the writing life. I was lucky that (pre-liquidation) my indie publisher had no concerns about my being unable to do the running around and promoting. It does break my heart a little that I am walled off like this, but that is the case with many aspects of my life. Many years ago in late nineties, I was shortlisted for the Robert Louis Stevenson Award on the basis of a short story. The award is a month in France in Grez-sur-Loing where RLS spent much time. It looks blissful and restful and surely promotes one's creativity. I seduced myself into applying  as my undergraduate year in France in 1983 was cut short because of the onset of ME and I felt that RLS, himself ill his whole adult life, would have wanted me to go. But had I won I would have been unable to go as I learned later that you have to cycle through the forest to get your groceries.

Still, a decade ago I had my book launch in Waterstone's on George Street (it still had the comma then, though now closed down) - it was probably the happiest moment of my life.

Blue shoes with zips and advocacy for ME

With all the focus on #millionsmissing just now I have been thinking about the shoes I was wearing in September 1982 when I went off to do my (ill-fated) year abroad in France, not yet nineteen. They were blue and pointy with a diagonal zip - I got them in Schuh and later fictionalised them in a scene in The State of Me where Helen is on a ferry returning home from France because she feels so hideously ill. In real life, I came home from France twice - I  actually went back, because my GP couldn't find anything wrong and thought I was homesick (months later, a locum GP discovered I had Coxsackie virus - he'd also had it - he recognised my chest pain, the feeling of having a heart attack - and luckily recovered). I still recall, going up the gangplank, if that is what it is called, on my way back to Normandy, so determined to beat whatever the hell was making me feel so ill - a wee fucking soldier, really - little did I know I was only storing up more hell, not allowing myself to rest. 

I have looked for photos online of blue shoes from Schuh from 1982 but I can't find anything. They were hideous (I also remember watching Boy George singing 'Do you really want to hurt me?' on television in our host family's living room).

I'm not officially involved in #millionsmissing Edinburgh, but I know it will be brilliant. Carol Monaghan MP has taken up the cause of slaying the toxic dragon that is PACE and also Stuart Murdoch from Belle and Sebastian will speak. I may bus/taxi to the Mound event on Saturday - a hop and a skip from me - Edinburgh is very walkable, if you are healthy and able -  I will see how I feel on the day. I was so shattered emotionally and physically after the Scottish Parliament event in January, and I have been advocating for ME sufferers for decades, in one way or another - I really need to step back now and focus on other things (novellas-in-progress, for example).

I was delighted to see that the fabulous Lighthouse Books has a display of books with blue covers in aid of ME Awareness Week - and The State of Me is there (photo nabbed from Lighthouse tweet). It is a little ironic that my France shoes were blue as blue is also the cover of ME Awareness.

I am also delighted that there is a feisty new generation of activists, they do us all proud, many of them advocating from bed with hellishly diminished lives. I do think the climate is changing, finally, though I don't honestly expect a cure for ME in my lifetime. I just hope newly diagnosed twenty-year-olds will not go through another thirty years of life-changing illness as I have done. I always say it takes a  decade to adjust to ME, and I hope soon others will not have to make such an adjustment, as the illness will be eminently treatable if not curable.

'Moments'

I've just learned to do 'moments' on Twitter.

All a bit higgledy and random.

You could really go on forever adding tweets to tweets.

Maybe you could write a novel.


Fiction as truth, my novel describes young woman dxd w severe ME 1980s pre 'CFS'

The walling off that illness brings

At the end of January I spoke at a Scottish Parliament event to raise awareness about the dire lack of services for ME sufferers: there are currently no consultants in Scotland with expertise in ME - and only one specialist nurse in Fife. We do, disturbingly, have the Lothian ME/CFS clinic - again, no expertise in actual ME, it appears to treat 'chronic fatigue' - and people are reporting harms from graded exercise therapy on offer. I met a young woman who now uses a wheelchair because of being made worse by graded exercise. And a mother spoke of her young son having a seizure because of graded exercise. This is horrifying. And they are not alone, many with an ME diagnosis have reported worsening of symptoms because of exercise therapies they have been pretty much coerced into. This exacerbation of symptoms is unsurprising as ME sufferers have poorly understood mitochondrial dysfunction. We *cannot* exercise without provoking highly disabling post-exertional malaise. My abnormal EMG and muscle biopsy from 1984 demonstrated this.

The platform of the event was a twenty minute showing of UNREST film (my review here) and Jennifer Brea, the director of the film, spoke via Skype. When it was my turn to speak, I was more emotional than I thought I'd be, I had to pause a few times, the words clogged in my throat, I was sure I would cry. There was  a palpable collective trauma in the room, the harm visited on ME patients was obvious in the mood of the audience. I do hope the sixteen MSPs who attended will follow up with action and address the issues this much neglected patient population faces. I gave a copy of The State of Me to Joan McAlpine, the MSP for South Scotland, we were both at Glasgow Uni in eighties, so I thought the novel might resonate for her.

There is going to be  a debate in Westminster on 22 February about the harms of PACE - this has been secured by Glasgow North West MP, Carol Monaghan. It is crucial - and hugely welcome - that this is happening. The tables are turning, though the clowns who have harmed us will not bat an eyelid and indeed continue to defend the nonsense of GET/CBT as primary treatment for a neuroimmune illness - the fact that patients are being made more ill doesn't seem to touch them. How convenient to wear so easily such armour against the truth.

I have been thinking about autumn 1983 when my fellow students who had completed their years abroad were gathered excitedly in the Modern Languages Building for the start of the new academic year - the Junior Honours year (our fourth year of study). There was so much to catch up on - this, of course, was pre-Internet - you had to actually see people or phone or write in order to know their news. I remember having to sit on a table in the hallway - it was mobbed, my legs were weak, I had constant pain in my spine - and feeling entirely walled off from the buzz and the joy of it all. I felt like an impostor.

I had only been able to do six weeks of my year in France and had to abandon it in the end. I would  not be starting Junior Honours - I'd been on course to do joint French and English Honours and got glowing comments in my second year English exams -  but had now signed up for just one class a week, which would enable me to finish an Ordinary Arts degree. I'd been diagnosed with Coxsackie B4 by then and had just started seeing Professor Behan - happily, there was an ME specialist in Scotland in 1980s - but I'd not yet had my ME diagnosis. I was very poorly but, there I was, still trying to keep a foot in the well world - much to my detriment, of course (I had no idea of the horror ahead). I could cry thinking about it now.

Learning to swim in Lahore; Muriel Spark and Kjersti Skomsvold

I recently reviewed Isambard Wilkinson's Travels in a Dervish Cloak, this passage stays in my mind:

Pakistani novelists of  a certain vintage remember a golden era in Pakistan's first decades when Anglo-Indians danced at Karachi's Metropole, hippies spun vinyl at discotheques, Pakistan was advertised as an exotic holiday location and Dizzy Gillespie beguiled a Sindhi snake charmer's serpent with his trumpet. That innocent age, if it ever existed, was dead.

It makes me nostalgic for a Karachi I barely know. We visited in 1974, two years after my father had died. I find myself scraping those memories up, trying to build a narrative (I have a letter that a visiting British doctor staying at Hotel Metropole left for my father who was then working at Jinnah Hospital in mid-1950s). I recall that we stayed in Lahore for a few days in the Intercontinental and that was where I learned to swim without arm bands. A far cry from the swimming lessons at primary school back home, where you would shiver as you were checked in line for verrucas. There was also an earthquake when we were in Lahore and all the dishes shook on the hotel breakfast table.

*

Many of us have been giving  Muriel Spark for Christmas because of the centenary of her birth. I've just re-read The Driver's Seat. I read it when I was about sixteen and didn't understand it, I am not sure I understand it any better but I much more appreciate the elegance and construction of this slim,  disturbing novel. And the humour is marvellous.

I just got a copy of Norwegian writer Kjersti Skomvold's MonsterHuman, which is now available in English. I blogged about her a few years ago and read her debut novel, which she started writing on post-it notes when she was very ill with ME. I'm obviously very interested in autobiographical, fictionalised accounts of ME and look forward to MonsterHuman. I see on Wikipedia that Skomvold also studied French at L'Université de Caen, which is a great coincidence as I was studying there in 1982/3 when I first became ill with Coxsackie virus, which later evolved monstrously into ME. We got ill at a similar age though I am a good decade older.

I love the start of new year, a whole new pile of to be read books on the bedside table:

Stairs and Whispers is an anthology by deaf and disabled poets that I have just started dipping into. It looks brilliant.

Comment piece in The Medical Independent referencing my novel

Am delighted that the current issue of The Medical Independent, a fortnightly Irish medical journal, has a comment piece on ME  ('George Winter examines the evolution of recognition for myalgic encephalomyelitis (ME)'), which  references my novel, TS Eliot, Hilary Mantel and Virginia Woolf. PACE is discussed too. It is so very refreshing to read a science writer who has an intellectual curiosity about the illness - and the literary slant is lovely too.

'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.

*

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'.

*

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.

Progress...

This is great news from Griffiths University in Australia: the National Centre For Neuroimmunology and Emerging Diseases (NCNED) has been awarded $4 million dollars to research ME. In this short clip, Professor Staines says: Exercise should be contra-indicated in Chronic Fatigue Syndrome as it worsens the clinical condition of the patient and should be avoided.

This, of course,  has been corroborated by patient testimony (though largely ignored) for decades. As my fictional character Helen Fleet, who has burning muscles at the drop of  hat, says: 'she has too much lactic acid in her legs'.

There is very fine research afoot -  the report from  the IACFSME last month in Florida.

And this: five teams of scientists awarded funds by Ramsay Award Programme.

This too: a great blog on the ethical failures of the treatment of ME/CFS in BMJ from Dr Charlotte Blease and Dr Keith Geraghty (a researcher who himself has ME). I love the term 'a caste system of illness' - I often speak of the 'casual racism' towards ME patients as if you can say what you want - any minor jab or slight is 'allowed' - because you don't really mean it (and also have no idea what you are talking about).

And Berkeley journalist/academic David Tuller, who has done so much to expose the PACE circus, is now illuminating FITNET in all its flawed and awful glory (Prof Esther Crawley's FITNET was excessively and misleadingly - unsurprisingly - reported in UK media a few weeks ago as it it were a cure for cancer).

In my early fifties, ill now for thirty-three years, I find myself even more hurt and angry at what people with ME have had to endure because of wilful ignorance. I hope with all my heart that the next generation of ill, young people will not have to suffer the insults we did and have effective treatments too if not an actual cure. (It beggars belief that in 1984, when my own diagnosis was confirmed with abnormal muscle biopsy and EMG, we had the nuts and bolts, right there, to build upon, but research was wholly hijacked in UK and taken in completely the wrong direction by 'belief-led' psychiatrists, one in particular, at the end of the 1980s).

I seem to collect inflammatory responses. After a cough from hell in August/September, I now have costochondritis, which is inflammation of the rib cage. One of the drugs I have tried is Nefopam but it cloaks me with nausea and makes me totally out of it  (I got on the wrong bus a couple of weeks ago and have probably now bumped into every 'obstacle' in my flat). I had never heard of costochondritis but it's interesting that those with fibromyalgia seem to be prone.

And something beautiful and cheering, a cat on a radiator, an iPad painting by David Hockney.

September

September always gives me a slight, quiet shudder, I almost don't know it's there, but I feel it. It's the anniversary of my going to Caen (in 1982) to study for a year and becoming hideously ill, with what turned out to be Coxsackie B4 virus. I'd picked up the enterovirus before leaving for France  - most likely when waitressing.

A few weeks later,  I got a severe cold in France, on top of the other bizarre and frightening symptoms. A doctor came to the house, I had terrible pain/pressure in my chest, it felt like a small animal was sitting on me, how could he know I had Coxsackie? I had strange vibrations in my muscles and the light hurt my eyes. I felt cloaked in nausea.

As soon as I could, I came home.  Got the bus/ferry/train. Really dragging myself.

I remember passing houses in Rouen on the bus and thinking of Madame Bovary.

When no one at home could tell me what was wrong, though feeling like hell, I went back to France - train/ferry/bus - really dragging myself.

Then the nightmare began.

I had to come home again.

Thirty-four years ago.

I will be grateful forever to the locum GP my mother had to call out to the house, who recognised I had Coxsackie, which led to specific viral tests and referral to consultant neurologist Peter Behan. In early 1984, Dr Behan (now retired professor of neurology) finally diagnosed me with ME, which explained why I felt like I was dying.

I will never forgive those who did not believe me. Never.

It has just gone midnight, I have a wee tear, I am not given to self-pity but sometimes I do think, this is all very fucking sad.

I do still hope maybe there will be effective therapies in my lifetime.

And I am happy and proud to have all the above fictionalised in The State of Me (2008), a bearing witness to the initial brutal  'assault' of becoming ill with ME, all those years ago.

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

Wellcome Book Prize 2016 - ignorance rewarding ignorance

*Updating this post: fantastic news, first ME biobank in Europe is officially opening its doors to external researchers on May 12 at London School of Hygiene and Tropical Medicine. More info here.

I resent using any more energy - it truly takes its toll - on the daft neurologist Suzanne O'Sullivan, but the travesty of her winning the Wellcome Book Prize is too important to ignore. I've been trying to correct her harmful nonsense about ME since she won the prize last week, on Twitter. She herself blocks everyone who challenges her, including the mother of severely ill patient Whitney Dafoe whose father, Stanford scientist Ron Davis, is valiantly trying to complete the ME jigsaw.

In serious scientific circles, there is no longer any doubt that myalgic encephalomyeltis/chronic fatigue syndrome (I hate that name, but it is used in research) is  a serious, complex physical illness - though poorly understood, it is NOT psychiatric or psychological. However, that didn't stop O'Sullivan from including ME in a chapter of her 2015 book, It's All in Your Head, a study of psychosomatic illness - or rather a series of anecdotes about patients she has seen. She has published before on carpal tunnel syndrome and non-epileptic seizures (I have not been able to find any papers on ME, unsurprisingly).  Whatever the merits of the other chapters, O'Sullivan has no expertise whatsoever in ME, but that didn't stop the judges from being seduced by her magnificent nonsense (worth noting I think that no one in the research world has heard of Suzanne O'Sullivan, but she is elevated to an ME 'authority' just by having this book published).

Her ME chapter is, of course, wholly uninformed and manipulative, unoriginal in its prejudice and bias. I reviewed the book last year on Goodreads.  Her Rachel chapter is revealing only in what it omits. It's fairly clear to anyone who is informed about ME -  as patient, carer or true specialist - that O'Sullivan is havering (good Scottish word). She's not going to rock the science, of course, that is progressing nicely - but unfortunately she is persuading new gullible readers that ME is an unconscious switch in our heads that flicks on and mimics serious illness. You couldn't fucking make it up that in 2016 this got the Wellcome Book Prize. The judges - I imagine intelligent and decent people - though only one seems to work in medicine/science - simply rewarded ignorance with ignorance.

What is *most* galling is the fawning, ignorant media, who have indulged her all week, themselves almost wilfully ignorant of biomedical research. They assume a mantle of authority. And readers and reviewers of O'Sullivan too become overnight experts in a neuroimmune illness they know nothing of.

I was told earlier by an obnoxious book reviewer (he was making quips about his own hypochondria and full of praise for her book, saying he'd be 'thrilled' to know he didn't have a serious neurological disorder, and wondering why do patients have  a problem with a likely psychological diagnosis) that the ME chapter is *only* 20 pages and that he had no interest in debating further. I told him I've been ill for 33 years, diagnosed by a consultant neurologist, and 250, 000 in UK have ME, so 20 pages is not just 20 pages; and I suggested perhaps it's best not to tweet about a book if you have no interest in discussing the issues. For this, he blocked me. My voice silenced just like that. Basically told to dry my eyes, we have nothing to complain about. A quarter of a million lives already severely diminished, further harmed by O'Sullivan's nonsense. Yes, book bloggers know best. What a luxury to be able to dismiss those 20 pages! He blocked others too who tried to educate him.

Interestingly, no one in the UK media has yet asked Suzanne O'Sullivan about the toxic PACE trial - which has just been in court over failure to share its data (someone on Amazon has suggested there might be a significance that one of the judges works for QMUL, but surely not, that is just too depressing to contemplate that judges would not be independent. Though the way this illness has been relentlessly politicised since the nineties truly stinks. Personally, I don't believe there was any 'fix', just lazy, old prejudices about ME being confirmed). O'Sullivan predictably praises GET/CBT in her book - cannily, without actually naming PACE - as the most effective treatment, with no reference at all to the harms of graded exercise. Just as she praises Simon Wessely, without naming him. His name, of course,  now carries too much baggage. Her claim that he is 'the person in the UK who has taken this illness the most seriously' is, I'd confidently say, a giant whopper (there are a few in the chapter). She conveniently omits the 1980s' UK specialists: Melvin Ramsay, Peter Behan, Betty Dowsett, John Richardson, and Nigel Speight (my illness was taken very seriously in 1984 by Professor Behan, then Doctor).

And, of course, she disingenuously conflates ME and 'chronic fatigue', just like those psychiatrists she emulates. O'Sullivan - and those like her - seek to control a dying narrative. She has been silencing those who politely challenge her. I was blocked when I simply asked her this. She lives in a little bubble on Twitter, which only lets praise in. Patients with ME have no right of reply. Is this not quite strange for a scientist? The prize is about stimulating scientific debate, one wonders what she is so afraid of. The truth, perhaps?

It has been gruelling having this illness for 33 years, and indescribably exhausting trying to educate others, yet still we are facing this prejudice and nonsense from a small, self-congratulatory club in the UK (USA are miles ahead, although we do have fantastic initiatives here like Invest in ME annual conferences). As someone else said on Twitter, how much evidence do these people need, what will it take? What do they all gain from acting like petulant children, fingers in ears?

I cried when I read that O'Sullivan had won the Wellcome Prize. Could this really be the most deserving book on the shortlist? - it is not even well written, the somewhat toneless chapters all blur into one (not to mention that the made-up patient name 'Camilla' is alienating, but that is a trivial point).  I have now run out of words, trying to educate the seemingly ineducable, but I do still have my precious novel. It remains my weapon. Two of these books tells the truth about Ramsay-ME, one recycles nonsense:

More updates:  *For ME Awareness Day (12 May) Prof Julia Newton on abnormalities found in ME. 

** More on PACE trial shenanigans.

*** Updates on mitochondrial research.