Saturday, 19 May 2018

Millions Missing protest - Edinburgh 12 May, 2018

I got to the #millionmissing protest for the last twenty minutes, just in time to hear Carol Monaghan MP's speech. I was happy to be able to shake her hand and give her a wee brief hug afterwards. I told her she will never know the enormity of what she is doing by challenging PACE and campaigning for biomedical research. The sun was shining and it was glorious to see activism in action by a community of patients who have been wronged by the medical establishment for far too long. Heartbreakingly, the inquest of 21-year-old Merryn Crofts, who died a year ago, was held yesterday and the coroner's verdict was death caused by ME. A mental health expert stated that Merry had no psychological illness. 

I hope the core of psychiatrists with Wessely at the helm are thoroughly ashamed of themselves. Wessely, of course, has said on different occasions that he doesn't care how unpopular it makes him but the more severely ill you are with ME, the more likely there is to be a psychological element.The Wessely gang are so thick-skinned and arrogant, I doubt very much they will be touched by this verdict, they will no doubt blather on about how ME and CFS are not the same thing, and that they have always been studying CFS - though they happily conflated ME with fatigue for decades - always careful to say in the small print that ME and CFS may not be same illness. This was always their get-out clause.

Shame on all of them, for all time.

Photo from @lighthousebks of Saturday 12 May:

Thursday, 10 May 2018

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.

Thursday, 15 March 2018

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.

Thursday, 8 March 2018


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.

Saturday, 10 February 2018

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.

Sunday, 7 January 2018

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:

Saturday, 21 October 2017

My thoughts on UNREST (2017) ★ ★ ★ ★

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.