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.

The Invalid by Matisse

I had never seen or heard of  Matisse's The Invalid until I saw it on Twitter last week and I can't stop thinking about it. This painting would have brought me comfort as a severely ill bedbound young woman in eighties. I would have had the postcard on my wall. I wish there were a postcard I could get hold of. I can't find out much about it except it was painted in 1899.

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.

Zaibunissa Street

I recently learned that Elphinstone Street (named after British official Monstuart Elphinstone) in Karachi was re-named Zaibunissa Street in 1970 after writer and journalist Zaib-un-Nissa Hamidullah. This interests me as Elphinstone was in Saddar, the area my paternal family migrated to in 1950s after Partition. I've read that Saddar was then full of book shops and (Iranian) tea houses. The streets were washed every day. Elphinstone was a street people strolled down. There was ballroom dancing on Elphinstone Street.

Today, the population of Karachi is approximately 16 million, Zaibunissa is a busy shopping street with over one hundred and thirty jewellery stores and most of the book shops have gone. Yesterday, I came across a purse that held earrings my Karachi family gifted me when they visited a few years ago after many years of little contact. The jeweller is in a building on Zaibunissa Street.

I looked up Monstuart Elphinstone, a Scot born in Dumbarton in 1779. I grew up five miles from Dumbarton - in fact, my GP practice was there - that's where we had our innoculations for visiting Karachi in 1974. And in early-mid eighties Coxsackie virus was locally being called 'Dumbarton Disease' because so many had become ill. I love how narratives link together, little synchronicities often appearing.

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.

My thoughts on UNREST (2017) ★ ★ ★ ★

*Update, September 2019: My review below is based on my careful viewing - twice - of UNREST in autumn 2017, I was sent the screener by Jennifer Brea's PR team. I was around this time invited to speak at a local ODEON showing of UNREST but was too ill to commit. I did take part in a very successful Scottish Parliament UNREST event in early 2018, where Jennifer skyped in to the session. It is important to note that since then Jennifer Brea has been diagnosed with cervical cranial instability (CCI) and tethered cord - she had various neurosurgeries in late 2018 which have resulted, very happily for her, in a return  to full health. There is thus far no medical explanation as to why fusion surgery for CCI would cure ME virtually overnight and I think this suggests that Jennifer *could* perhaps have been misdiagnosed with ME in first place, and may explain why it seemed that she was at times 'inhabiting' the role of a person with ME. Please note, this is my opinion, I am not saying Jennifer did not have ME, I am stating my own feelings based on her film and also her often confusing commentary on Twitter. (I - and I am certainly not alone - have noticed worrying inconsistencies and contradictions and hyperbole in her narrative.)

Jennifer's may well be a cautionary tale and could perhaps turn out to be instrumental in having discovered a new (albeit unusual) differential diagnosis of ME. Chiari - another structural abnormality causing brainstem compression - is already  listed under differential diagnosis in the ME Association clinical guideline, which is co-authored by consultant neurologist Abhijit Chaudhuri. I certainly think UNREST is still valuable, the other severely affected patients' stories are compelling, but there must, in my opinion, be a caveat/update in any screenings, especially when the film is being used for continuing medical education (CME) in USA.

***

UNREST is a new film from USA about ME directed by thirty-five year old Jennifer Brea. The film has garnered much praise and documents Brea's own descent into ME (or CFS as it's interchangeably referred to in the film - this is not without problem as the toxic reframing of ME as CFS remains unexplored). Still, ME sufferers have been starved of representation (though we've also had VOICES FROM THE SHADOWS (2011) and FORGOTTEN PLAGUE (2015)) and it's unsurprising there's been such a buzz about the film. I'm passionate about education and I tried hard to watch UNREST as someone who knows nothing about ME, to see what it taught me. This was almost impossible to do (to put my own experience and knowledge to the side). UNREST is not just about illness, it's about how technology connected Brea to other 'shut in' people, invisible - housebound and bedbound with ME.  We are all networked, now, globally, if we choose to be. In a way, the theme is the obsolescence of the written word for communicating lived experience.

I found UNREST to be powerful in its illumination of ME - particularly through the inclusion of three very severely ill younger patients - and I found myself in tears frequently. But I also found the film lacked clarity in places. The politicisation of the illness is glossed over, as is previous advocacy, but it would be impossible to investigate the politics of ME in a 90 minute documentary - and this is very much Brea's own story (not a UK story where the horrors of PACE still abound). I think those more recently diagnosed, still grappling with the hell of it all, will find the film resonates hugely for them.

The film looks beautiful and, at times, has a dream-like quality: this reflects the sense of unreality that comes in the early stages of this illness, the sense that it can't actually be possible to be so alarmingly ill without any recognised treatment path. I loved the lighting, the shadows, the focusing on objects, like blue jars on a window sill with snow falling behind, to mark the passing of time. When writing about chronic illness there is little sense of plot, nothing changes, so you have to amplify small moments. A ceiling fan, a ladybird, a pair of high heels - unworn shoes are an important #millionsmissing campaign symbol - objects that take on immense meaning when you may be staring at them for hours on end, too ill to do anything else.

Having been ill since 1982 - and gone through my own hell as an eighteen year old -  I'm naturally a little jaded, but it was impossible not to cry at the extreme circumstances of Jessica Taylor-Bearman (UK), Karina Hansen (Denmark) and Whitney Dafoe (USA). I already knew a little about all of them. The image of poor twenty-seven year old Karina sitting on her bed, back home with her parents after being forcibly institutionalised for three years, will haunt me for a long time. The expression on her face is something that is hard to see (or unsee). Danish psychiatrist Per Fink is the villain in this piece and I couldn't help but have the very personal memory of my dear late Danish stepfather who supported me unfailingly throughout my illness. Twenty-six year old Jessica has been ill since she was fourteen and was in hospital for four years. She has severe osteoporosis as a result of being bedridden for so long. She has champagne held to her lips by her dad and counts back to the birthdays she has spent in bed (I thought of my own twenty-first in bed in 1984, which I fictionalised almost twenty-five years later, Helen Fleet, bedbound, feels like ‘a clown, a grotesque invalid wearing bright red lipstick and titanium earrings’). And Whitney, the son of Stanford professor Ron Davis, is unremittingly and severely ill, inhabiting a dark and hellish place - he  cannot even speak.

Brea decided to film herself to document what was happening, as doctors were not taking her symptoms seriously. She goes through what is familiar to many of us, trailing from specialist to specialist until we find someone with the expertise and knowledge to identify what is actually wrong (those more recently diagnosed or new to the illness may find Brea's own story more immersive than someone like myself, ill for decades). Seven years ago, she had a high fever, she  appeared to recover, but still never felt quite well. She would drag herself to classes. She  got infection after infection and would experience suddenly not being able to pick up a glass of water or sign her name on a cheque. On bike rides, instead of being able to do twelve miles, as before, she could only do six (this is not in the film but I've seen mentioned in a recent Times interview). After no joy with other doctors, she is eventually diagnosed with conversion disorder by a neurologist and walks home from the appointment to see if it is all in her head, as she has been told. She narrates that she collapses when she gets home and is in bed for most of the next two years.

She discovers others with similar symptoms online and wonders if she too might have ME (this, of course, is the Wesselyian fantasy, ME sufferers diagnosing themselves on the Internet. In Professor Wessely's world, patients are discouraged from educating themselves in case they discover that they are actually physically ill). Brea learns much about the illness through social media. This would have been the stuff of science fiction in the eighties. I'd never heard of ME. I remember looking up Coxsackie in the university library and the heavy book burning my arms. It is hard now to convey the paucity of information thirty years ago.  Brea consults New York's ME specialist Dr Enlander  - though he is not named in the film - and is prescribed Valcyte - an antiviral drug - which leads to her improving in two days and being able to walk again. This seems almost miraculous and it frustrated me that there was no discussion about Valcyte - what it is, what it does - some viewers may have wondered why we are not all taking Valcyte. It is an off-label treatment, which has not helped everyone who has tried it - and indeed can make some feel worse. And is not easily available to most (NICE guidelines in UK do not recommend antivirals,  unsurprisingly, as 'CFS' clinics prefer to treat ME sufferers with wholly inappropriate graded exercise and CBT. These guidelines are now, thankfully, under review, not before time).

Brea acknowledges that she was lucky to have access to a specialist. I felt, though, I wanted to know more about her actual diagnosis. We see her having lots of blood taken, I wanted to know what the tests were for. Being diagnosed is such a significant moment for those of us who have struggled to be believed: I went through the hell of Coxsackie B4 virus, undiagnosed for nine months, which then 'evolved' monstrously into ME. The Coxsackie diagnosis was a key moment - crucial to my getting a referral to neurologist Prof Behan, who worked closely with Dr Melvin Ramsay - all those years ago. My GP could no longer say I was imagining tremors in my muscles.

The film did make me think about how different a diagnosis is now than in the eighties. I was horrified in 1984 that I might stay ill for another five years (that was the advice back then - that it might 'burn itself out' in five years). I did not know how I would be able to stand the physical hell of ME for that long. I'm glad I had no idea of the true prognosis. Now, of course, those with an ME diagnosis know that that they might stay ill for decades. Brea speaks tearfully in the film of the grief and loss that the illness brings, she reflects candidly that she is doing 'a good job' by not killing herself.  I was struck by the scene where via Skype,  Jennifer asks Jessica, who is lying down flat in bed, almost ethereal, being filmed from  above: How did  you stay sane?

I remember too crying a lot at the beginning of my illness. I felt so ill, completely poisoned. It was terrifying ('How can you feel so ill and not be dying?' as my character Helen Fleet says). I'm sure I articulated my grief too back then but I can't now remember. I think it took me a decade to truly adjust to the illness. I missed my academic self. I wanted to know more about how Brea felt having to give up her PhD. She never refers to it after her diagnosis. Decades on, I still feel a kind of grief that I had to abandon my year studying in France in 1982/3 - and that I was unable to complete my French and English Honours degree.

I was conscious, though, while watching the film that it is a constructed piece of art, an artifice, like any narrative, and a couple of Brea's own scenes felt slightly 'theatrical', at least, to me. I don't mean acted, rather enacted. For me, this detracted from authenticity. It felt, at times, that she was re-enacting what she had experienced rather than experiencing it in that moment. I imagined numerous 'takes' to capture the reality of the illness. I compared it in my head to writing a scene, which you polish and polish until it's perfect (I could be totally wrong, of course, these are only my thoughts). Also, I was interested that much remains unsaid in the film. For example, Brea is not seen having to cope with the very damaging disbelief from family or friends, as many of us have done at some point in our illness (of course, she may well have done, we don't know, we only know what she reports). We see her interacting only with her husband, Omar, who is noble and loving and patient. He only loses his cool - understandably - when Brea attempts extreme mould avoidance as a treatment for her illness. Earlier in the film, when Brea has had an acute episode after over-exertion at a Princeton reunion, Omar - in tears himself - makes an observation that resonated for me: other people's pity is hard to bear.

Brea makes a crucial point when she says that one of the reasons the illness is not always believed is because we are hidden so much of the time. We spend so much time indoors recovering from small exertions. No one sees us at our worst. Some sufferers, tragically, cannot move from bed at all and are totally dependent on others for care. And there are a minority of ME sufferers whose illness is actually progressive. There is a brief but good description from Dr Nancy Klimas on mitochondrial dysfunction and the problems with aerobic exercise that ME sufferers have.

As I understand it, these days, Brea uses a power wheelchair when she is outdoors, but has now improved sufficiently to be able to promote her film in the USA and other countries (Brea also says she has POTS, though this is not referenced in the film. I think she should have mentioned this, as POTS and ME often 'overlap'). Improvement is always to be celebrated in ME, it's wonderful when it happens, though her current schedule seems impossible to sustain for someone with ME, certainly, the illness I know as ME.

Then again, I don't know anyone who is taking Valcyte. I guess it allows for a much greater level of functioning in some. While I have slight concerns that Brea is somewhat unrepresentative of many with ME, I, of course, recognise that we all can and do have different staminas and symptoms - and  symptoms do fluctuate. I also know that because of the lack of belief we've faced, we can be fiercely wedded to our own experience of the illness. And the rhetoric of 'oh, how can she do that?' can be extremely harmful (we've all faced it, I'm sure). But all of us - with true ME - share the cardinal symptom of post-exertional malaise (PEM). We are defined by exertion-intolerance: fatigability not fatigue. And in between times we are always invisible, always 'recovering' from an escalation of symptoms. The differences, though, between mild, moderate, severe and very severe ME are night and day.

There are small moments that perhaps only someone with ME will see. In one scene, a young woman Casie - whose mother, the quite fabulous Leeray, also has ME - says her arms are getting tired, when holding up her iPad to show photos. A small moment, but instantly recognisable - and important to portray. The last few minutes of the film focus on the #millionsmissing campaign, a campaign conceived by Stacy Hodges. Those empty shoes are such a potent symbol: most of us put our shoes on to go out into the world every day. Those of us with ME often can't and don't. There are ME sufferers who have not had to buy new shoes for years. There are ME sufferers who have killed themselves because they cannot stand it any more. There are also ME sufferers who have died of the consequences of extremely severe ME.

The film ends with beautifully stirring music - the score is by Bear McCreary - and Brea telling us that while the illness has destroyed her life and she wishes every day that she were well again, that she has embraced a different, new life. She expresses gratitude for the lessons the illness has taught her. To be honest, I found this hard to understand - and  a little saccharine. I could never be grateful for the catastrophe of my illness, but you just can't compare seven years with thirty-five, our landscapes are entirely different. Though, I can also say I have never at any stage of my illness felt 'grateful'. The illness has been much too harsh, physically. And I have lost too much. The enforced 'stillness' of the illness has given me a useful perspective as writer but I would swap that in a second for never having had ME in first place.

Perhaps, though, Brea's optimism is part of the narrative arc, a conscious 'happy' ending to such a bleak tale. And perhaps, importantly, her own ending - and significant improvement (thanks to medication) - also gives hope to younger and/or newer sufferers. The film is an exhausting watch. Before the credits, we see the names rolling of some of those who have died as a result of having ME (I think they had taken their own lives). I sat silent for a few minutes, after the film ended, I couldn't speak (and I imagine seeing this in the cinema would enhance the  emotion I felt, I watched on laptop, was sent a link by UNREST UK team).

I'd like doctors and politicians - and anyone who is cynical about the illness - to see UNREST.  I'm glad it's being shown in medical schools. But I'd also have liked to have seen more of the science that we do know - and I fear that the lack of political context may prevent the film having as much impact as it could. The medical and political scandal of what has happened to ME sufferers is never fully articulated. I wish, for example, footage of Stanford's Professor Montoya apologising to sufferers for the way the medical profession has treated them had been included.

In the UK, ME is synonymous with the hijacking and reframing of the illness as 'chronic fatigue' in the 1990s by  Simon Wessely and colleagues -  the ascent of UK psychiatrists cannot be ignored, nor the toxic influence they have had worldwide on the perception of ME, with their relentless and ruthless promotion of the biopsychosocial model - and wilful conflation of criteria of ME and CFS. While the film packs a huge emotional punch, I'm not sure how much it will punch politically in the UK. The biopsychosocial narrative is so embedded, it will take a juggernaut to shift it. Hannah McGill and Leslie Felperin, both respected film reviewers, still referred ignorantly to the physical v psychological debate as if the robust science of physiological abnormalities simply doesn't exist (though the Guardian has historically been dreadful with ME coverage). Mark Kermode gave a lovely review, though he was already empathetic.

We need journalists and doctors - and everyone else - to come out of UNREST enraged at what ME sufferers have endured, and unequivocal that ME is a physical illness - it is not enough that they feel greatly moved by the plight of very sick people.  Still, the film is giving the illness a much needed, greater visibility - and kudos to the UNREST team for pulling this off. I very much hope this visibility can translate to more research funding, which is what we need above all.  I dislike starring systems - they lack nuance and subtlety - but having given my response in great detail above, I happily give UNREST four out of five stars as an art work about ME.

*Just to add that UNREST was funded through Kickstarter and it's a testament to the generosity and hope of ME sufferers and their families - and their faith in the process - that UNREST has had the media coverage/distribution/success it has.

Dr Avindra Nath's research. And lovely books

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

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

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

*

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

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

*

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

A Book of Banished Words

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

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


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

Coxsackie – pronounced cook-sah-kee – is the name of a small town on the Hudson River in upstate New York. Derived from Native American language, it’s said to mean the ‘hoot of an owl’. Poetic when whispered, but Coxsackie can also be a bully, swaggering its hard-sounding ‘C’s.

*

Life is truly stranger than fiction. How could I have known in winter 1982 that the hellish illness that had ruined my year in France - yet to be diagnosed as Coxsackie virus, which in turn triggered ME - would, thirty-five years later, be represented in a piece in a beautiful art book whose author had (by then) done a residency in my stepdad's childhood home in Greenland?

A change of mind...

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

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

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

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

The world is fucked and books are all we have

The world is fucked and books are all we have. When things are tough, I look for illumination in poetry, nothing has helped, but then a few days ago someone tweeted 'Apes' (1990) by Adam Zagajewski.

 Apes

One day apes made their grab for power.
Gold seal-rings,
starched shirts,
aromatic Havanas,
feet squashed into patent leather.
Deeply involved in our other pursuits,
we didn’t notice: someone read Aristotle,
someone else was wholly in love.
Rulers’ speeches became somewhat more chaotic,
they even gibbered, but still,
when did we ever really listen? Music was better.
Wars: ever more savage; prisons:
stinking worse than before.
Apes, it seems, made their grab for power.

Poem by Adam Zagajewski, from Without End

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On my bedside table just now are these:

Last weekend, I read Claudia Rankine's prose-poem Citizen, which is startling and unsettling (for me, more prose than poem, but well worth reading). I often stop books for no good reason and take weeks/months to go back, it may be a concentration thing. This summer, I stopped The Vegetarian a third of the way through and started a thriller (Apple Tree  Yard by Louise Doughty, which I loved). I will go back to The Vegetarian soon (I also really liked the story behind the translation). The Blue Devils of Nada by Albert Murray is a gorgeous dipping-in book of essays and there are some gems there. I will also, of course, go back to James Baldwin (started and stopped for no good reason). Jackie Kay's Trumpet is a secondhand book passed on to me, which I look forward to.

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The Goldfinch painting by Carel Fabritius has come to Edinburgh (how sad he died aged 32), which prompted me to start my Kindle version of Donna Tartt's Pulitzer-winning novel - I've had it for two years, unread. I'm 100 pages in and love the plot, but the style is too wordy for my liking. The micro-details clutter the prose, which is exhausting to read. I recall mixed reviews at the time. Julie Myerson was not too keen. Not sure I can stay the course. I think it would make a great film though.

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A couple of weeks ago, I watched John Berger and Susan Sontag discussing the process of reading and writing in 'To Tell a Story' on Channel 4 in 1983. The discussion was part of a series called VOICES (I don't remember VOICES, Channel 4 had just started and I was at the beginning of the nightmare of what turned out to be ME). Berger and Sontag are so compelling, you agree with both of them even when they have opposing views. Their earnestness almost seems quaint now, but I was struck by their respectful disagreement with one another. They are mesmerising to watch and listen to.

And I have just discovered Scottish doctor, filmmaker and  poet Margaret Tait (1918-1999), what a remarkable woman. (‘Emily’: ‘Emily Dickinson shut herself in a room / And wrote about her pain. / She wrote too about joy’.) You can hear a recording of Margaret Tait reading 'Emily' and other poems  here on the Scottish Poetry Library website.

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And Leonard Cohen is dead, that is hard to know. Since 1980, I have loved his poetry and his music and his beauty. He was old-ish, I guess, 82, but I have so many folded-up memories that his songs unfold again. 'Suzanne' is mentioned in my novel. ('...and she feeds you tea and oranges that come all the way from China' has to be one of the most beautiful lines ever).
 

I cried last Wednesday morning when I learned Trump was elected and I cried again two days later when I learned that Leonard  had died.

The world is fucked and books are all we have.

Letter in BJGP

I had an e-letter published in response to this article on CBT/GET in the British Journal of General Practice at the end of August. I see my response was also published on 1 October.

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.

'Five Years'

I cried last night watching this BBC Two documentary 'Five Years', which focuses on five key years of David Bowie's work. I loved most of his seventies' stuff, the later music less so. I also loved the clips - 1 hour 9 minutes into the programme - of him playing John Merrick in The Elephant Man, with exquisite vulnerability and beautiful ugliness.

I had not followed Bowie's music for a long time but there was a time when he was all I listened to, in my teens and twenties (alongside Leonard Cohen and Frank Zappa). The outpouring of sadness on social media is, of course, not just the passing of an extraordinary and unique artist - aged only 69 - but the mourning of our own Bowie-wrapped memories (and that wrapping has beautiful, silver bows).

But now a shift has taken place and our memories are, in a way, suddenly hollow. 

I had all of his albums, my cousin and I exchanged 'Heroes' and 'Space Oddity' as Christmas gifts one year, I don't remember who gave what, but he was so physically beautiful on both covers. I remember how the 'Diamond Dogs' cover folded out. It was sumptuous. And how I could never get into  'Lodger', I'd play it over and over, hoping to like it more, but having to admit to myself I didn't...

I remember seeing the German film Christiane F. at a Glasgow cinema (no longer there), mesmerised by the Bowie soundtrack. The boyfriend I went with died many years ago from a brain haemorrhage,  I don't know the circumstances, we had lost touch, but I remember what I wore to the cinema that night, a long red cotton Indian print dress.

(I also remember the pink trousers I wore, dancing to 'John I'm Only Dancing' in the QM Union.)

I don't have a favourite track, it's almost impossible to choose one, but the song that always pierces me is 'Five Years' and it is in my novel. When I was told by a consultant neurologist in 1984 - almost eighteen months after becoming ill with Coxsackie virus - that I had myalgic encephalomyelitis (ME) and it could last for five years, I was horrified and truly didn't know how I could bear feeling so  ill for another five years. I was twenty years old. My character Helen Fleet says:

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. (The State of Me, Chapter Five)

It's hard, I think,  to describe Bowie without resorting to dreadful clichés - all I can say is I have a lump in my throat and even writing this I have tears. Yesterday, I realised how much of a part he had played in my growing up. When I hear the tinkling at the beginning of 'Ashes to Ashes', I am back in my childhood living room in 1980, aged sixteen, not yet ill, watching Top of the Pops. At New Year, I tweeted this, it feels a bit dislocating now. 

The Appa Dance (made us happy as carpets)

We had much hilarity with MadLibs over the holidays. My eleven year old nephew introduced us to the game. You're asked for adjectives, adverbs, nouns, names and places, but only the questioner knows the title of the story. A narrative emerges, flash fiction, nonsensical and surreal. Appa is my nephews' nickname for me, sometimes they will call me Appa instead of Auntie Nasim. (My brothers and I had a very old aunt in Pakistan when we visited in the seventies, we knew her as Auntie Appa, we did not know then that 'apa' was Urdu for elder sister, we thought Appa (two 'p's) was her name.

The Latest Dance Craze

Have you heard about the latest dance craze sweeping Paris? It's called The Appa! Slip on your hunting shoes, turn up the speakers on your Christmas tree and let's master the moves that put this bleak dance on the map: put your hands on your shins, stomp your nose and strike a sad pose. Take fourteen colourful steps to the left, spin irresponsibly, then take two boisterous steps to the right. Throw your mouth in the air and sway your foxes from side to side. For the big finish, stick out your belly button and wiggle it excitedly. Repeat all of these circular steps until the song is over.

It reminded me of The Time Warp in Rocky Horror. In the early eighties, we spent many a happy night as students in the cinema, doing all the actions. In another Madlibs,  'happy as carpets' came up. I want to use that gorgeous phrase in a story.

*Update I received this photo on Twitter of the 'happiest carpets I know', stunning image of dyed rugs drying in Tangiers:

Two papers and two films

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

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

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

The longest day

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

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

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

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

Didn't expect to see ME mentioned in Neel Mukherjee's novel

Am enjoying Neel Mukherjee's 2010 novel A Life Apart - a novel within a novel -  and was surprised to come across this observation from the main character Ritwik Ghosh, a student from Calcutta studying English Lit at Oxford in 80s/90s:

 'And then there is the steady rise of illnesses Ritwik's never heard of - glandular fever and ME, chronic fatigue syndrome and RSI. God, these are the very people who take a  dozen jabs before they go to India and carry a whole pharmacy with them! At least you get nothing more serious than diarrhoea or worms out there but here you get incurable, unheard of things such as BSE and CFS and ME, the acronyms themselves trying to hide the dreaded nature of the new-fangled confections.'

It's not often you come across references to ME in fiction. Ritwik has had an impoverished, traumatic childhood in Calcutta, at the hands of a violent mother - those passages are hard to read - and the point here is that these new 'British' illnesses scare him - in a way, India is safer.  

I would  like Ritwik to read The State of Me,  though it was not yet written then, but Helen Fleet,  also an English Lit student in eighties, was of course already ill with ME.

I also love this paragraph:

'These presences and shadows scare him sometimes. He has taken to sitting with his back firmly pressed to the corner where two walls meet at right angles. He has become like a cat: at least two sides are covered and nothing can startle him from behind. Whatever encounter there is in store for him will be face to face; he's prepared for it, ready to look it in the eye.'

Heartbreaking, he has become like a cat.

How I love novels.

Autumn: research & lumberjacks & novel reprinted

Watching the 2003 film Monsieur Ibrahim et les Fleurs du Coran the other night, I was reminded of my time in France at L'Université de Caen, in the scene where the son feeds his father cat food and passes it off as pâté. My flatmate and I used to buy jars of pâté, from Carrefour that looked and tasted like cat food. I still remember the red and white chequered lids. I came across my carte de séjour the other day, which gave me a pang, more than just the nostalgia of finding student items from the '80s, it was when my life changed forever. In this student ID photo, I'd already picked up the Coxsackie B4 virus (while still at home in Scotland) and was having bizarre, frightening symptoms, with no clue, of course, of what lay ahead. In the photo, I'm wearing a purple and red and white lumberjack shirt - my then boyfriend's. Lumberjack shirts were fashionable then. 

The lumberjack theme is resonant:

In interesting new research from Professor Montoya's team at Stanford, they've found specific brain anomalies in ME patients:

The analysis yielded three noteworthy results, the researchers said. First, an MRI showed that overall white-matter content of CFS patients’ brains, compared with that of healthy subjects’ brains, was reduced. The term “white matter” largely denotes the long, cablelike nerve tracts carrying signals among broadly dispersed concentrations of “gray matter.” The latter areas specialize in processing information, and the former in conveying the information from one part of the brain to another. That finding wasn’t entirely unexpected, Zeineh said. CFS is thought to involve chronic inflammation, quite possibly as a protracted immunological response to an as-yet unspecified viral infection. Inflammation, meanwhile, is known to take a particular toll on white matter.

In the reporting of these findings, one news outlet accompanied its article with a photo of a tired looking lumberjack. It's hard to overstate how fucking irresponsible this is, though we are used to articles about ME with stock photos of fatigued women decoratively slumped over laptops, or sitting on beautiful white sofas looking a wee bit peaky. And as for the illness being 'real', well, the wise/informed among us have known that for decades. But when you get idiots in the medical community renaming a serious neuroimmune illness as 'chronic fatigue syndrome' - as happened in the late eighties/nineties - and reframing the illness to suit their own agenda - you probably can't expect the media to be anything other than sloppy.

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I used to count the years after I got ill in 1982, I stopped some time in the late nineties. But, still, when autumn comes, I know deep down that another year has passed. The State of Me has, happily, just been reprinted. The cat food scene is in there, of course.