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.

Part Two of Trusadh: 'The Toxic Tiredness' on BBC Alba

Part Two of  'The Toxic Tiredness' documentary airs tomorrow night - Monday 13th - on BBC Alba at 9pm (and repeated tomorrow at 10pm). My original response to episode two from January 2012 is here.  I am only briefly in part two: 17 secs, 47 mins and 48:50 mins. Professor Behan appears at 35 mins, he diagnosed me in late 1983/early 1984 with severe post-viral fatigue syndrome/myalgic encephalomyelitis, after specific antibody titres of Coxsackie including IgM; lymphocyte subset analysis; detailed single fibre EMG and measurement of jitter; and specific muscle biopsy.

I had by then been ill for almost 18 months after becoming ill with Coxsackie B4 virus, my Honours degree/year abroad in ruins. I remain grateful that I was seen and treated by a consultant neurologist before the Wessely school began to hijack and really take hold of this illness a decade later, conflating it with idiopathic 'chronic fatigue'. Interestingly, in all of his writings, Professor Wessely tends not to reference key-players in the world of ME in the eighties, doctors like  Behan and Melvin Ramsay and Betty  Dowsett and John Richardson.

*

This film with Dr Nigel Speight is also an eye-opener, he intervenes on behalf of children with ME who have not been believed by psychiatrists/paediatricians/social workers. He describes the collusion of such professionals, their false belief that they have effective treatments in the form of graded exercise and CBT. I can only imagine the horror  of being a child or a parent of a child who is severely ill and not believed. I was not yet nineteen when I first became became ill, but at least I could not be bullied into treatments that would make me worse. An ill child is so dependent on others to do what is best for them. And they wonder why people with ME are anti-psychiatry!

If anyone has a child with a diagnosis of ME, Tymes Trust is a brilliant charity. If I had a poor wee one with this illness, this is where I would go for advice. Children do seem to have a better prognosis than adults, but being able to rest sufficiently is paramount to recovery.

Art & catastrophe, & BBC Alba documentary, repeated on 6 and 13 January

The BBC Alba 'Toxic Tiredness' documentary from January 2012 is being repeated tonight at 9pm*. The Gaelic parts are, of course, subtitled. I previously blogged about both episodes here (part one) and here (part two). I appear in episode one right at the beginning looking like a bag lady, with my usually rather funky prescription sunglasses - they filmed us at weird angles outside for a few shots, the effect is alienating and disorienting, maybe that was the intention. And then at approx - 2.30, 7:30, 13, 18:30, 24, 29, 40:50 and 48 mins (I talk about the novel here and read an extract).

And Professor Peter Behan, the consultant neurologist who diagnosed me in 1983/84, appears in episode two, 35 mins in. He is magnificent. I especially liked:

  '... there is an essential biochemical component to the illness which needs to be elucidated, and research should be along the grounds into these illnesses rather than dealing with psychological talk the talk nonsense'

Dr Charles Shepherd  of the ME Association - also diagnosed by Peter Behan -  makes a great contribution too (though I don't necessarily agree with *everything* he says). The early-mid eighties was still a hard time to get a diagnosis, it took me almost 18 months, but  the psychobabble that we know today was yet to reach its dizzying heights of obfuscation -  this conflation of  serious neuroimmune illness with 'chronic fatigue' has, as we know only too well, done untold damage. We can only hope that science is now progressing, albeit slowly, unfettered by the hijackers. Here's to some decent biomedical research in 2014.

* Part 1 repeated Tuesday 7th at 10pm and soon on iPlayer

*

And I came across these wonderful photos by Penny Clare the other day on the Centre for Medical Humanities blog. She took them while severely affected and bedridden. I particularly like A fingernail celebrates New Year (I don't want to breach copyright so am not posting any photos here).

 More of Penny's photos can be seen on the excellent Phoenix Rising site.


For me, these photos highlight the link between creativity and illness, we are 'forced' by the illness into places we never knew we would go. We are still ourselves but catastrophe has given us a different way of expression. I often think of my novel/fiction as  my response to catastrophe. Writing often is.

Post-Alba: 'Toxic Tiredness' (Part Two) - updated

(*Having re-watched Part Two, I've now added to this post in bold at the end.  And Part One is blogged here. **Also, both parts are available on you tube  now. One here and Two here.)

I'm not blogging about ME in February, or perhaps ever again(!), I badly need a break, so this is a quick response to Part Two, I need to watch again, my thoughts now, honestly disappointed - there was a real lack of balance this week, too much focus on emotions and depression and 'being kind to yourself', which have absolutely NOTHING to do with neuroimmune illness; also, too much pro-Mickel, there should  have been someone who did NOT recover with MT. It all just seemed a bit pat, and I still don't understand what MT is! I couldn't follow the steps. And I certainly don't agree with David Mickel that ME belongs to a group of 'fatigue disorders'. No siree.

It just seemed a bit cobbled together this week, there was no sense of narrative, last week's felt sharper.

Delighted for Holly, though, who had clearly been severely ill (she made me think of my friend described in below's post), and I felt she was describing the ME I once knew, sitting on the stairs to get down one at a time, cos I could not walk, but also - what role does pregnancy play in improving ME, how does she know that wasn't/isn't a sustaining factor? And how did she get to the stage from being so ill to being able to consider pregnancy? That seemed to be pre-Mickel, but was just skipped over completely. But hers was the narrative I wanted more of. Her experience of MT would have been more meaningful to me.

Also, if you are treating someone who also has had depression - Kim the photographer - that muddies the waters. I think from a pure ME p.o.v, we need to see MT demonstrated to work on patients who are not at the same time depressed (or afraid of becoming depressed), or pregnant (absolutely no disrespect to Kim or Allison).

We also needed more Prof Behan - we had to wait 35 mins! (and I was secretly wishing  my book would have been on his shelves). Quite emotional seeing him, took me back to the days of hell, when I attended Southern General. 

Interesting - he now says that stressors like strokes and some post-surgery states can also trigger ME?

Loved his chat about enteroviruses and mitochondrial damage. He is the man.  

Was also a bit peeved - they said -  I regularly take part in online debates, I stay away from forums as much as poss!  I go to MEA FB - mainly for info - and occasionally Invest in ME, that's  pretty much it. (And I comment on BMJ when necessary.) I neither have inclination nor energy to argue in circles with people you are on the same side as. It sucks the very life out of you.

So, yes, I hate to say it but I feel a wee bit disappointed, but I will need to rewatch, absorb it properly. I think I said 'take psychiatrists away from the research', and I stand by that... 

Still, the role of low cortisol/hypothalamic dysfunction - is that the right term? - is interesting in ME - I improved for a *very* short time with ACTH injections - and £5 million would perhaps have been better spent on Mickel than PACE. There's a thought.

On the plus side, no shots of me looking like a bag lady who found her sunglasses in a skip - (my gorgeous precription sun specs just don't look so glam on film) ...

To clarify: approx 47 mins in, the voice-over/ subtitles say that I've 'encountered threatening behaviour' online, which is misleading, I've personally never encountered 'threatening behaviour'. Yes, I've been upset -  there is often heated debate between PWME - attributable in large part to the lack of belief and confusion of criteria - and I've been demoralised/dismayed at how disrespectfully people can speak to one and other (especially those who comment anonymously or under pseudonyms), and I - for the most part - have learned to avoid those situations, where whatever you say will be skewed. However, there is also a great deal of support and warmth online, a generosity of spirit. Undoubtedly, the *ugliest*  comments I've seen are from members of the public - including  doctors - towards people with ME - I've been horrified at times by the prejudice and cruelty. The most upset I've personally been was after going on the Bad Science (Ben Goldacre) forum last year,  only because  a comment of mine from CIF had been cut and pasted there - needless to say I never went back.  As someone said, that is a lion's den - and those people are - I understand - supposed to be scientists. But there is just so much at stake here, after all the heated/recursive/looping threads, after all the laptops and iPhones are switched off, we remain ill, we still have ME.

Pleased with my comments on biomedical research,  48.30 mins in: 'Take psychiatrists out of the equation. Let psychiatrists study psychiatry, let neurologists,  immunologists, virologists, let all those good people study ME.'

Update: I'm less disappointed in Part Two on a second viewing. I think the story of ME  has been represented in as 'simple' a way as possible (and I mean that in a positive way). 'Trusadh' is a human interest/documentary format, it is not investigative journalism. As I've said before, it would take a six-hour Panorama special to portray what has gone on in the world of ME since my diagnosis. Kim (the photographer) has discussed in a new blog post his experience of being dissed ('CFS is not as real as ME'). I commented on his blog, in a respectful way, to highlight why this may have happened (not that anyone should diss anyone else, it is the medics who need dissed.) And I'm truly happy for everyone featured on Alba who has experienced an improvement in health. I did wonder if the young student featured in Part One had had a self-limiting post-viral state, or maybe he had a milder ME and recovered fully because he had rested sufficiently?

To have Prof Behan saying on television that there is an 'essential biochemical component to the illness which needs to be elucidated, and research should be along the grounds into these illnesses rather than dealing with psychological talk the talk nonsense' is just priceless. Also, I didn't realise he had examined some of the original Royal Free patients thirty years later, and that his late wife, Professor of Pathology Dr Mina Behan, had identified abnormal mitochondria in *those* patients.

Psychologist Professor Roddy Cowie rightly points out that scientific debate is often heated, not just ME. However, the history of prejudice against people with ME and the re-defining (hijacking) of criteria is what marks it out. After  almost 29 years of illness, I passionately adhere to the theory that ME is neuroimmune and CFS is biopsychosocial, and that it has been hugely harmful, misleading - and divisive - to conflate them. Still, the conflation is part of the narrative, and 'Toxic Tiredness' has shown this. But when anyone starts talking about changing lifestyle, and acceptance and banishing fear, I am pretty sure they don't  experience the same illness I experience.

The last word goes to Prof Behan: 'I have not seen any form of cognitive therapy or talking therapy to be of any value. I'm not saying that if someone who is in authority and who offers you warmth and kindness . . . won't have an effect for the benefit, it will, but the answer that it's the cure, I'm afraid, is wishful thinking.'

Toxic Tiredness (Part One) BBC Alba doc

Part One of 'Toxic Tiredness', the BBC Alba documentary on ME is now available on iplayer for 7 days. I was so nervous before watching (though not being filmed), but am pretty happy with how I come across, and also Dr Shepherd of MEA does a very good job, remarking on 'the major scandal for the medical community' in marginalising PWME the way it has (and does). Feedback online seems mainly positive, though some are saying that severely ill people - and I mean bedridden - are not represented and that is indeed true. I know the makers of the programme certainly wanted to include more severe sufferers, I guess they could not find anyone to take part? It's a tricky one, I'm not sure I would've wanted to be filmed - or could have been - when I was severe, it's a vulnerable place to be, but  unless you are close to someone who is severely ill, it's pretty hard to imagine: 'I don't think anyone can understand unless they witness it', as one of the contributors, a nurse, says. I also loved the comment by a GP, 'The more they push themselves, the more ill they become... it can take three days to recover from one bout of exercise... For the majority, it's a lifetime illness'.

Not nihilistic, not defeatist, just true.

I think everyone who took part is to be applauded, it's brave to put yourself on a platform for everyone to view (and judge!) and you don't know how you are going to be edited (which is really quite scary).  I'm not certain that everyone taking part has - or had - 'classic' neurological* ME  - but the conflation with 'CFS' - the lack of consistent criteria - is now an engrained part of our narrative; also, these are highly edited clips, and it is not possible to capture the full story (illness) of any one of us. At the end of the day, I can only know my own story.

Also, although no longer severe (I describe myself now as moderate with severe dips, I am typically housebound for at least half the week, with essential sofa/bed resting in between), I think  I'm fairly typical of the long-term path from very severe to moderate/severe - with many relapses - major and minor - along the way -  reaching a plateau that you just can't get beyond. I often think of the very severe phases like a grim apprenticeship that we all must serve, and it is utterly tragic for those who remain unremittingly severe.

Five different voices were heard, a sad tale of lives disrupted and broken - and, in one happy case,  mended completely, a young student. I've said before that it can take a decade to adjust to this illness, the shock of it all, re-adjusting to a different life, absorbing the impact. If I'd been interviewed when I was younger I'd be telling a different story than now - I've had *so* long to adapt, change my expectations, my hopes - but I still have my dark moments,  weeping at what I have lost: the photograph 71/2 mins in of me as a well 17-year-old had me in tears when I first watched, my mother too.

I was most moved by the policeman's story, he is the most severely affected of the other four and his ME  effectively 'ended his career' twenty years ago (he had never had a day off sick). I liked the nurse's description of 'an iron bar at the back of my neck, which someone was pressing into my neck' - I know that feeling so well - and also her description of the exhaustion as feeling like 'a busy day at the peats',  that's wonderfully poetic. I was also moved by both the policeman and the photographer talking about the excellent support they've had from their wives and children. I've said before this illness could undo you without strong family support.

I wasn't sure at first about the shaky camera going downstairs/outdoor shots, but the effect of being disoriented is good, it feels otherwordly, and what is ME if not otherworldly? (Incidentally, I had to keep sitting on a wall to rest for the walking scenes, just round the corner from me.) And I loved the mournful but gentle strumming in the background. So thanks, BBC Alba, for tackling the subject of ME in the first place - and letting people tell their stories.  I'm also glad that they included my comment about my ongoing anger at the psychiatric lobby hijacking a neurological illness (I saw it happen, ME flipped like a pancake, 'becoming' CFS in early 90s, almost a decade after my own diagnosis). Part Two is next week, I'm looking forward to Professor Behan,  he is not a man to mince his words. And also two of the people in Part One undergo Mickel Therapy, that is indeed going to be controversial. That is discussed a little here on MEA in the comments thread.


* Yes, 'neurological ME' is a tautology, but it is increasingly used by PWME to distinguish between neuro ME - the real thing - and nebulous fatigue syndromes.

** I was also thinking would be good if they could have filmed me the day after when I was shattered from the day before, it would have been a very different me, not dressed, post-exertional malaise (PEM) in action, just the usual. But I would be too vain, quite honestly, and the crux is: I have my book, my precious book, to tell it like it is.

*** I have just worked out where I appear if you want to re-watch: I am at the beginning and then at these intervals: 7.35 mins, 13 mins, 18.30 mins, 24 mins, 29 mins, 40.50, and at 48.50 mins I read from TsoM and talk a bit about writing it -  the prog did not include my describing  the *years* that took...

Dorothy

I was having coffee with my lovely stepdad  - who is in his third year of vascular dementia - and he told me he had an appointment with Dorothy Perkins. There was a Dorothy Perkins store opposite us, so it was easy to see what had triggered his thought. I hope you have a lovely time, I replied. I told him about the upcoming Alba programme, there are still some doctors who don't believe we are really ill, I said. Bastards, he replied, in his inimitable - emphatic but polite - Scandinavian way. And then he looked lost, totally lost, I could have cried.

Stornoway Gazette previews BBC Alba documentary

Preview of BBC Alba documentary  from the Stornoway Gazette. I'm told I am mainly in Part One, but make a brief appearance in Part Two (to comment on the need for biomedical research). I was filmed for probably two hours, so am curious what will end up being used. Professor Behan, the consultant neurologist who diagnosed me in 1983/4 appears in the second part. Coincidentally, BBC Alba filmed him in Glasgow in the morning before then coming to film me in Edinburgh in the afternoon (I had said mornings are out for me!). I remember thinking how bizarre that all these years after he treated me, we end up being filmed on the same day for a documentary. I have taken this description of his work from MEA: 

Professor Behan has now retired from his consultant and research post at the Institute of Neurological Sciences (Southern General Hospital) University of Glasgow but is still involved in ME/CFS research. Along with colleagues, including John Gow and Abhijit Chaudhuri, he was responsible for much of the early research that helped to establish a biomedical/neurological model of causation. He also worked very closely with Dr Melvin Ramsay. His wife, Professor Mina Behan, who sadly died a few years ago, was also heavily involved in ME research - muscle and mitochondrial abnormalities in particular.

I still remember being horrifed when he told me my illness could last for five years. How can I bear this, I thought, how can I bear it? It was inconceivable to me - unfathomable - that I could be so ill and no one could to anything to help me. But Professor Behan was my absolute saviour, to this day I can't thank him enough for telling me what was actually wrong, 1 had been ill for over a year by the time I got my diagnosis.

And that is why The State of Me is in three parts, each of which spans five years. And that is why I still can't listen to 'Five Years' (David Bowie) - one of my favourite songs - without a pang.

Counting crows, & BBC Alba

I love this video of a crow using  a jar lid as a sledge. 

And this is enlightening too, I didn't know they were so intelligent.

There are also crows in The State of Me:

*

helen         He’ll be so handsome in his graduation
                  robe and I should be with him, wearing my
                  polkadot dress – afterwards, they’re going to
                  the Ubiquitous Chip for dinner and I’ll be
                  stuck here counting rooks and crows.

stranger    What’s the difference between a rook and a
                  crow?

helen         A rook’s a kind of crow – a gregarious
                  Eurasian crow to be precise. They nest up
                  high and are very noisy.

 *

The BBC Alba documentary on ME - as part of 'Trusadh' series - is out next Monday 23 at 9pm, the second part on Monday 30. (If I have a lisp it's because I'd recently had my wisdom tooth out.)

Come September/October of this year I will have been ill for almost thirty years. It's a long time to have been ill, a long time to have dealt with all the bullshit. I remember my first symptoms like yesterday, but I do not remember the last day of feeling completely well. I was not yet nineteen when I got the Coxsackie virus, which triggered  ME. I had just gone to live in France as part of my degree, it should have been wonderful, and it turned out to be nightmarish.  And I know I come across as feisty and fighting, but I have the fragility that all of us with longterm ME have, and I have the 'scars' of not being believed.

Have I written a historical novel?

Interesting to see that Jarvis Cocker is joining Faber as an editor, what a quirky, lovely event. I love Pulp and listen to Jarvis on 6 Music on Sundays when I remember he's on (listening again is just not the same). Faber's editorial director was the agent who very much encouraged me to turn The State of Me into a novel, when I showed it to her  in 2000. Back then, it was a very long short story - maybe 20,000 words - called Through the Round Window. I did not think I had the stamina to write a novel, and had no idea about writing novels, but somehow I got there. She said I wrote 'clear, gorgeous prose' - that phrase has always stayed with me. She was no longer working as an agent when I eventually finished the book, five/six years later, but she was certainly instrumental in my keeping the faith that my writing worked. Self-belief, I think, is the greatest tool to getting your book published. Well worn advice but true, if you don't  truly believe in your writing no one else will. I think the final word count was around 100,000 but I would need to check. BBC Alba asked how I managed to write a novel, having ME. I could not write a whole first draft, which I imagine is how most writers write. I certainly had an outline, but I would finish one chapter, polish  it up as much as I could before going on to the next. I simply could not have faced having to go back over 100,000 raw words, editing from scratch, that would have been overwhelming. The book has an episodic feel - short scenes and pauses -  and I think that very much reflects the illness, the many necessary rests in-between tasks, the white space, the gaps where you 'recover'. Again, this was all unconscious, I wrote what I wrote, the way that I could. I remain so happy I got there, and especially now, with all the XMRV/WPI stramash, my novel almost feels historical, pre- any of this research/debate. I think though, although  it spans 1983-1995, it still very much reflects the truth of the illness, the chaos and hell we find ourselves part of. As always, my heart goes out to those who remain severely and unremittingly  ill.