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.

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.

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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.

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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''.

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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.

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.

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.

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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.

The clamjamfry of the PACE trial

It's quite a clamjamfry in the world of ME research at the moment. The dodgiest-of-dodgy-trials aka as the Oxford PACE trial is having the life shaken out of it in the form of American health journalist and academic David Tuller. Tuller has recently and comprehensively demolished the trial over on Prof Vincent Racaniello's virology blog. And James C Coyne, professor of health psychology - and visiting professor at Stirling University - is weighing in too. The Americans have come to save us.

I often speak of the ME narrative being taken over by the CFS narrative in the nineties, and by chance I came across an ITN clip from 1996 - lovely Trevor McDonald informing us that ME was no longer known as ME, but now officially called CFS, and Simon Wessely (not yet knighted) telling us that longterm cases of disability had a psychological component. All interspersed with an exhausted woman telling us how very tired she was - no disrespect, but she apparently had (slow onset) chronic fatigue, not the actual neuroimmune illness ME. And glimpses of a shady-looking medical panel making this name change decision. So now we have actual visual proof of when the trajectory began: Ramsay-ME being buried by the psychiatry-led UK medical establishment. I'm so glad I didn't see this in 1996, the television screen would have been cursed to hell. (And given that the feisty consultant neurologist who diagnosed me in 1983/4 had also studied psychiatry at Harvard, you'd think he *might* just have picked up on any psychological component...)

But it has all come back to bite them on the bottom, as PACE is, of course, rubbish in so many ways. Conflating a complex, poorly understood neuroimmune illness with chronic fatigue was never going to work, was it? Apart from the methodological flaws/holes, what enrages me is that the scaffolding of PACE is that ME - even if virally triggered - is perpetuated by unhelpful illness beliefs - and that changing how you think about your illness (CBT) and a wee graded jog (GET)  round the park will make you all better. No matter that many people with ME are reporting becoming *more* disabled after graded exercise therapy. Once mild or moderately ill, now bedridden. No matter that you can't fucking exercise because your head shuts down and your muscles burn and you become exhausted and weak as  soon as you remotely overdo it. There is mitochondrial dysfunction, that's why. But PACE makes no allowances for post-exertional malaise (PEM).

Anyway, in response to Tuller, Simon last week wrote a defence of PACE - full of rather dull nautical imagery - which was quickly satirised by Graham McPhee, a former maths teacher who had to retire ten years ago due to ME. In the meantime, while PACE implodes, there is great research afoot. At last month's research collaborative meeting in Newcastle, virologist Professor Montoya of Stanford apologised to the ME community and said it was his wish that all USA doctors would apologise to ME patients for the way they been treated (and what a pleasure it was to meet him briefly and shake his hand). The Norwegian government has already apologised, a shame that the UK neither has the impulse nor grace to do the same. Here is the summary of ongoing and new research presented in Newcastle written up on ME Association's site by Dr Charles Shepherd. And the USA's NIH has just pledged a massive injection to research.

My 14 year old nephew sent me the first draft of his short story assignment for school, I love reading both nephews' writing. I'm bemused by the arc of good versus evil - the Americans are all powerful and good, fighting evil terrorists who want to nuke the planet. Of course, in real life, there is much more grey, but as far as PACE is concerned I'm very glad we have the Americans on board. One can sense they are flabbergasted at how the UK media has been bolstering the psychiatric lobby, presenting only one - very flawed - model of ME for the last twenty years.  And on the subject of nephews, my younger nephew, who's ten, almost eleven, dressed up as an assassin at Halloween. *

* update Welcome article by doctor/journalist James Le Fanu in Telegraph on the nonsense of PACE - rare to have intelligent articles on ME by UK journalist.