Friday, 18 November 2016

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.


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


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.


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.


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.


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.

Monday, 3 October 2016

Thursday, 29 September 2016

Nothing to see here, sorry to spoil the party

The PACE recovery data has been released and analysed - the results are not pretty, confirming what ME patients, their charities and advocates, and informed doctors have been saying all along: PACE is seriously flawed. It is not news that it's flawed, it has always been flawed, but the trial was spun and spun and spun to be the best thing since sliced bread, thanks, mainly to the UK Science Media Centre. I am too weary to write more, but here is David Tuller hosted by virologist Professor Vincent Racaniello. And Julie Rehmeyer, a science writer in USA, in STAT. Sir Simon, unsurprisingly, is still defending PACE, it is risible (he says he is 'sorry to spoil the party'. Such respect for a patient community jubilant that his colleagues' nonsense is exposed for the circus it is). He also has said, according to Julie's article, Nothing to see here, move along. Well, there is plenty to see. Plenty.

News of the debunked trial has been widely disseminated in USA, so far only one UK journalist has taken the bull by the horns, the headline is excellent: Exercise and therapy cure for ME is ‘seriously flawed’, but we have, of course, Peter White, the lead co-principle investigator still defending PACE - and he has enrolled his friend George the homeopath to help. The PACE gang are simply running out of people to speak up for them. The article, also, does not scrutinise the harms of GET, nor the appalling smearing and misrepresentation of patients along the way, but it's a start. The ME community is owed too many apologies by too many journalists, who simply didn't listen. And I will never understand those doctors who have spread and continue to spread misinformation - based solely on their own fragile beliefs.

*Update: Peter White  now has his swansong in the Guardian. Peter has turned into Jesus, and is now very concerned about the wellbeing of ME sufferers. He's not as smooth as Wessely (who loves the limelight) in his media outings - I have never seen such an unctuous, disingenuous piece. The comments are excellent, a real education for those who wish to know why  the science of PACE has failed so horribly. My own comment here.

The mainstream press in UK are still not picking up the story, though independent journalist Jerome Burne has written about the whole debacle here. 

Sunday, 11 September 2016

Like being in a boxing match

I'm very prone to post-cold coughs that go on forever - possibly because I have chronic sinusitis (from over-using mothballs years ago) and I can't use steroidal decongestant sprays  because of my eyes - but this has to have been the worst, almost five weeks of coughing. I had a vile summer cold beginning of July, that came and went, then a few weeks later I developed a cough from nowhere. Three lots of antibiotics and now an inhaler (which I think is helping, though I had to get a spacer, I just couldn't use it properly, all new territory for me). I am coughing much less now, but my poor ribs are still battered after more than four weeks of coughing and it feels like I am boxing myself whenever I cough or breathe deeply - the pain is so sharp and sudden. If I feel I am going to cough I have to clutch a pillow to my chest to try and cushion the blow. And even when not coughing, it can feel like having a clamp round your heart. I'm entirely used to back pain and am necking prescription painkillers (plus Ibuprofen) I use for my back for my ribs. I was hugely relieved that I got through my six-monthly eye check-up on Monday without coughing.


The  razamatazz and spin of the PACE trial saga has also felt a bit like a boxing match.  After spending £250 000 to prevent the recovery data from being released - QMUL are finally releasing the data,  a result, of course, of the recent tribunal. There has been, understandably, celebration and much anticipation on social media: the narrative of harmful nonsense has finally been toppled.

This graph (by Simon McGrath) represents published Lancet data (2011) versus original protocol-specified data (2016): 

The graph is explained more fully  here by Tom Kindlon, an Irish patient, who has worked hard to debunk PACE. Tom has been ill for over twenty years and is housebound as a result of graded exercise therapy (GET). Aside from the appalling anti-science of PACE, it is the narrative of 'mad, bad patients' that has been so galling, as health journalists unquestioningly and sycophantically jumped on the PACE bandwagon, ('cos The Lancet said it, it must be true). The Science Media Centre is certainly culpable for the way it has perpetuated this narrative of 'militant, dangerous ME sufferers':
“Mr Matthees points to press releases from the Science Media Centre, a body working with PACE researchers, to the effect that they were “engineering the coverage” to “frame the narrative” in such a fashion to discredit those with legitimate criticisms as misguided extremists by sensationalising a small number of indefensible actions to the detriment of the vulnerable wider patient ‘community’. This has been highlighted by respected scientists, and clinicians (see p87­90/B7). Rather, no evidence of a ‘silent majority’ in support of the PACE trial has been put forward.”[1]

All ME patients and advocates have much to thank Alem Matthees for, the ME sufferer in Australia, who is currently bedridden from his efforts of challenging PACE. It is unacceptable that someone with ME would have to go through so much in order to get to the truth. I hope the PACE team are  proud of themselves.

Tom Kindlon had this to say, which made me smile.


And thanks to @kafkaboots for telling me about Pierre Bonnard's Le Boxeur, it fits right in with this post:

More of Bonnard here, I love The White Cat too.

Thursday, 1 September 2016


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 France to study for a year and becoming ill, with what turned out to be the Coxsackie virus that I'd picked up before going  - most likely when waitressing. Though feeling like hell, I went back to France twice - train/ferry/bus - when no one could tell me what was wrong,  really dragging myself.

Really dragging myself.

Then I got flu in France. As soon as I could, I came home.  Got the bus/ferry/train again. I remember passing houses in Rouen and thinking of Madame Bovary.

Then the nightmare began.

That's thirty-four years ago.

I will be grateful forever to Professor Behan for diagnosing me, telling me 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 hope maybe there will be effective therapies in my lifetime. 

“Despite the heterogeneity of CFS, the diversity of factors that lead to this condition, our findings show that the cellular metabolic response is the same in patients,” said Naviaux. “And interestingly, it’s chemically similar to the dauer state you see in some organisms, which kicks in when environmental stresses trigger a slow-down in metabolism to permit survival under conditions that might otherwise cause cell death. In CFS, this slow-down comes at the cost of long-term pain and disability.”

Dauer state, I like that.

Saturday, 13 August 2016

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

I recall when I read Salman Rushdie's Joseph Anton in 2012, my favourite line was, 'Who shall have control over the story?'. I thought, naturally, of the way the illness myalgic encephalomyelitis (ME) - an illness I have had for thirty-three years - has been ceaselessly misrepresented in the media, and of the way health editors, journalists and academics have locked onto the narrative of a group of UK psychiatrists - who harmfully conflate ME with unexplained 'chronic fatigue' - and recycled it uncritically, for the last two decades:
'At the heart of the dispute over The Satanic Verses, he said, behind all the accusations and abuse, was a question of profound importance: Who shall have control over the story? Who has, who should have, the power not only to tell the stories with which, and within which, we all lived, but also to say in what manner those stories may be told? 

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


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

I thought no more of this until the weekend before last, when someone on Twitter told me that Anna Katharina Schaffner had quoted me extensively in her new book EXHAUSTION and was 'trying hard to present us in unflattering ways'. I googled and found a Times Literary Supplement review* in which the reviewer had said:
In a chapter called 'Mystery Viruses' Schaffner frames Nasim Marie Jafry's semi-autobiographical novel The State of Me (2008) with a nuanced exploration of the controversial diagnoses of chronic fatigue syndrome, myalgic encephalomyelitis and post-viral fatigue syndrome. The author shows how and why both sufferers and medical researchers have so much invested in alternative somatic and psychological explanations'.
I was, of course, intrigued and got a copy of her book. I figured the truth would lie somewhere between 'unflattering' and 'nuanced'. Sadly,  nuanced it is not. Schaffner, while attempting to appear empathetic has, consciously or unconsciously, managed to misrepresent me in several ways - including misquoting me - and 'Mystery Viruses' is - wearily and, perhaps, unsurprisingly - little more than a puff piece on Professor Simon Wessely. He's referenced in 80% of the bibliography along with the dreadfully cruel social historian Edward Shorter (I guess he deleted this post).  Schaffner can see why ME sufferers would be offended by the latter, but nevertheless finds him 'thought-provoking' and gives him generous room in her chapter.

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

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

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

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

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

This is how and why nonsense about ME is written and how a dysfunctional narrative has been perpetuated. The wrong people have been controlling the story. And younger, naive writers pick up the baton. Listing the symptoms of ME, Schaffner includes 'a perceived sense of effort', making her bias - and ignorance - obvious early on. Post-exertional malaise - described in this short film by Dr Mark VanNess is listed in the Institute of Medicine (2015) report as one of several  core symptoms, objectively verifiable:
          Post-exertional malaise (PEM)
PEM is worsening of a patient’s symptoms and function after exposure to physical or cognitive stressors that were normally tolerated before disease onset. Subjective reports of PEM and prolonged recovery are supported by objective evidence in the scientific literature, including failure to normally reproduce exercise test results (2-day cardiopulmonary exercise test) and impaired cognitive function after exertion. There is sufficient evidence that PEM is a primary feature that helps distinguish ME/CFS (SEID) from other conditions.

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

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

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

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

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

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

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

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

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

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

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

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

In my view? Dear god.

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

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


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

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

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

And here is info about the recovery data being sought.

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

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

Monday, 8 August 2016

Taking a selfie with a chappal

I saw this last week on Twitter, the image has stayed with me, children improvise and re-enact all the time, but the poignancy of this wee boy using a chappal (flip flop)  to take a selfie is enormous. The smaller boy seems to be wearing sandals that are too big for him, and on the wrong feet.