Doctors & patients & writers ...

I attended a talk mid-week on doctors who also write, a hop and a skip from me. It was a long talk, almost two hours, and I found it so hard to concentrate towards end but it was very enjoyable hearing these three medics talk about their dual lives. You do not come across writing doctors very often and I was especially interested in their concerns about self-censorship when they also have such important social roles as doctors. During the Q&A someone referenced Virginia Woolf's essay 'On Being Ill'  - she wonders why there is so little fiction written on illness - and it seemed a good point to mention The State of Me. I said I was a patient turned writer and that self-censorship can be an issue for all writers. These doctors were all charming speakers - two are GPs, one is a child psychiatrist - and I wonder what their thoughts were when I said I have ME and have written a novel about it, that I was passionate about education through fiction. I did not mention my name or the book's title, but I wish now I had taken copies to give them.

After last week's travesty of science - and Prof Malcolm Hooper has written, as always, an eloquent response - I really have  no idea how we fix the distorted narrative. I think we have to look to the rest of the world, international biomedical research.

I have remembered a BMJ podcast from 2010 where Simon talked about ME. (This was during XMRV hype -  I always remained neutral, if XMRV was the answer, great, if not, let's move on to next thing (and we know how that all turned out). However, I have personally known since 1983 that my illness is connected in some way to my immune response to the Coxsackie B4 virus. The often not very bright media now tries and twists it to make out that it's only since XMRV that patients/researchers have linked ME to a virus. And that no XMRV = no virus. Not so.)

Anyway, in this podcast, Simon speaks around 4.25 mins in about the broad/narrow definitions of the illness, which of course is the whole crux of the conflation and chaos, though he does not seem too concerned with the chaos. The patients Simon sees/researches apparently get better with CBT and graded exercise therapy (GET), whereas those of us with my illness get worse with exercise, and I will keep saying this to those who will not listen. It struck me also that he had spoken back then about the need for other researchers to get involved, and 24 mins in, sounding very relaxed, says: 'Other disciplines should get more involved because CFS is under-researched' ...'and you'd be surprised to learn is actually  a very enjoyable and  very rewarding area of research.'

Very enjoyable and very rewarding.

No mention of the 'acute hostility and bravery' that last week earned him the John Maddox prize. The acute hostility - and I am not questioning that threats were made, I am sure they were, and no one would want to condone this - was, unnecessarily, ramped up to unbearable degrees  last year by a hysterical media, which  resulted in an entire patient population being (further) demonised. We can only wish  that Simon had perhaps practised some self-censorship in his dealings with the media.

Of course, if you actually *know* about the politics surrounding this illness  the Maddox award video seems like a spoof, like something from Drop the Dead Donkey - a newsroom satire from 90s -  an observation made by my mother. They're all daft, she said, shaking her head when I showed her. Bloody bastards, said my stepdad - who now has dementia - and later came into the living room with a pan on his head  - he loves joking with hats - but he has always been a source of great support to us throughout my illness, especially at the beginning, the utter, utter hell.

Am highlighting again this young scientist's blog where an informative discussion went on after the Maddox prize - it makes a change to have a thread where PWME are not drowned out by obnoxious, hostile, uninformed voices. *And then there is another young medic who exuberantly denounced PWME for 'stigmatising mental illness' and told us we have to grow up. He has obviously been fed the Wessely school narrative, and nothing else, but I  hoped he would be willing to educate himself and learn there is another narrative to explore.

After my novel came out in 2008 I breathed a huge sigh of relief, I honestly thought I'd never have to defend my corner again, I felt my job was done. But when we are continually assaulted  - and it *does* feel like assault - by twisted narratives and half-truths, we have to speak up, though it is truly and godawfully  sapping.

We have to speak up. These are our lives.

*I see this page has been removed, perhaps the young medic at www.thetwentyfirstfloor.com had a rethink about being so rude about an illness he clearly knows little about...

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.

A view from Spain...

At the weekend I had an email from Clara Valverde who had also just finished reading The State of Me. She observed how important it is to have the reality of the illness reflected in literature/art etc. Spain is a member of the European ME Alliance and Clara, a Canadian-Spanish former nursing professor, described their website (linked above) as somewhat hell-raising, a 'rebel M.E' site. Am sure if my Spanish was any good - all I remember is 'gato' for cat - I would love it! And for Spanish speakers, Clara has her own book here (rough translation, But You Look So Good! ME/CFS, a politically incorrect illness). She said she likes it most when I talk about books and I wish I could do that more often, but some ME issue inevitably whisks away my head, and you all know how slowly and haphazardly I read anyway. What I loved recently was a short essay by Geoff Dyer, 'Reader's Block', in which he describes his increasing inability to stay with a book unless it grabs him immediately. I laughed out loud when he said: 'Some books, obviously, are a waste of one's eyes'. And how, years ago, he laboured through The Idiot, hating it the whole time. Me too.

I've said before I'm staying cautious about XMRV and its possible link to M.E. Still, I have complete faith that the scientists at WPI will get to the bottom of it. XMRV will be guilty or not guilty. If not guilty, WPI will move down another intelligent biomedical road. (I'm interested in the exploration of XMRV coming from ticks. I was bitten by a tick when I was a child after visiting a safari park. Could XMRV have infected me and then hidden away until the Coxsackie virus reactivated it? After all, a lot of people in the west of Scotland were exposed to the Coxsackie B4 outbreak in 80s but didn't develop M.E.)

So, who knows, maybe we are finally on our way to a biomarker and cure for this illness that has fucked up so many of our lives. I can't emphasise enough to those who are not in the know: the tragic lack of biomarker has allowed M.E to be diagnosed in those who don't have it, and it has become dangerously symbiotic: pretend-M.E cases then feed into the 'trivialisation' of the illness, there is no longer only one illness under the microscope, proper research is impossible, look at the scandalous PACE trials, funded by our ever helpful MRC.

Lull

Am still somewhat bedraggled after four days with nephews. I felt like I'd been in a zoo, but a lovely zoo. Playing Harry Potter Cluedo was a learning curve, I didn't know any of the characters or rooms (have never read or seen Harry Potter), it was more simple with Professor Plum and the lead piping. My six-year-old nephew hid under the overhanging table cloth so we couldn't see his cards. The board got dragged every time and we had to realign the pieces. The nine-year-old could remember what cards you'd shown him three turns ago and was quite gleeful when I asked for the same card twice, my own notes confused me, a whirl of asterisks and arrows, not very helpful in the end. We had secret wishes in the dark, the six-year-old and I, wearing animal masks. His were all about having the biggest toy in the world, until he realised mine were - deliberately so - about kindness and sharing and sun. He then changed his top wish to having a million pounds so he could buy cat food for all the poor cats that didn't have homes. It was so transparent, I don't remember the last time I laughed so much. I love being Auntie Nasim but I've been thinking how much I'm enjoying the lull, and thinking also what a calm word lull is - it just sounds what it is.

And from all the recent hurly burly of XMRV research, which I am just catching up on, we have the Whittemore Peterson Institute: 'Where do we go from here?' I see that Wellcome - irresponsibly and inaccurately - defines ME thus: Chronic fatigue syndrome (CFS) is also known as myalgic encephalomyelitis (ME). CFS is characterised by long-term tiredness or fatigue that affects the everyday life of patients. There is no known cure for CFS. I don't want to swear on my blog so early in the New Year, but 'long-term tiredness'. Really. Nice misleading euphemism, Wellcome! I thought science was about the pursuit of truth. And we wonder why so many people are diagnosed with ME when they don't actually have it.

Unreliable narrators

In fiction, there is the concept of the unreliable narrator, a character you cannot trust, some characters more duplicitous than others. Many of the powerful figures who legislate over ME are unreliable narrators. I'm a little surprised she knows so little about XMRV but Nicola Sturgeon strikes me as a decent enough politician and I hope she actually takes on board what the very fine Sarah Lawry was trying to tell her.

Twitter seems to have something of the unreliable narrator, it has doubled my tweets from 90 to 180. It has done worse elsewhere, adding or subtracting thousands of tweets from others. There seem to be many bugs with the new Twitter layout. Disturbing that a microblogging tool, an instrument of reporting, is telling so many lies.

The blinkered ones keep their blinkers on

Just saw that the blinkered ones - also known as the National Institute of Clinical Excellence - are at it again. I really don't have energy to get enraged, just wonder how long the fun & games will go on. The Scottish Guideline at least acknowledges the recently discovered XMRV and the blatant damage of graded exercise reported by patients - and by comparison may almost merit the Nobel Prize for Medicine. I'm truly curious to know how many people have cured themselves of ME - and I mean the illness I know as ME , not pretend ME - by following NICE's orders since August 2007. Coincidentally, I came across NICE earlier this evening in another context, on the London Review of Books blog - before I 'd seen the ME Association post above. I left a comment over at LRB. I must've known in my bones NICE was up to something.

And I have just seen this over at the beautifully named blogging not jogging. We are treated to the stupidity of two women named Esther - Esther Rantzen and Dr Esther Crawley, both devoted fans of the Lightning Process. As I said on my comment over there - they sound more like they are presenting Blue Peter, they totally lack gravitas, especially Dr Crawley. And I mean no offence to Blue Peter, just that these women seem more about sticky back plastic than neuro-immune illness.

BBC coverage of ME blood ban

Slowly, slowly, the tables are turning.

Are depressed people banned from giving blood?

No, I didn't think so.

In the words of Helen Fleet: Hurrah, hurrah, hurrah!

*

Radio 4 Today Programme, Dr Charles Shepherd discusses the blood ban. 54 minutes in.

Baggage

Susan Douglas, the producer of WHAT ABOUT ME? announced a few months ago that her ME/CFS documentary was taking a different direction. I have been - naturally - curious as the film was going to originally be a partial dramatisation of my novel. Blogging recently about the film, American journalist Mindy Kitei writes that 'the spine of the film' is XMRV. As I have said before I am not putting all my eggs in the XMRV basket - I am afraid to - but it is hard not to feel optimistic when you look at the Whittemore Peterson Institute website. The possibilities are dazzling. Allow yourself to imagine not only a cure for ME, but a time when you can talk about the illness without all the baggage. That is so much part of the ME experience, the baggage, the defenses we have all had to construct. Latest film developments here.

More on XMRV

I find it exhausting keeping up with the XMRV debate, in fact I honestly can't absorb it all. Good post here from ME Association.

The XMRV factor

I came across this interesting post on XMRV. Human nature and politics are always present, even in the 'pure' world of science. Personally, I fear there is an unhealthy reverence around the whole XMRV thing, people are putting too many eggs in this basket - perhaps understandably - and their hopes will be dashed if it doesn't turn out to be a significant factor in ME. If it does, great, but if it doesn't...

Blood from a stone

Blood donation is vital, those who can should, but if there are unknowns donation should be prevented. Still, getting the UK government to ban ME blood, at least until more is known, is, like most things to do with this illness, an uphill struggle. I got 'new' plasma in 1984 (an experimental ME treatment), it niggled me for ages in the 90s - especially when I had a major relapse - that this was pre-HIV screening and I had become infected. I got tested (in USA) and I was fine. I have no idea whether XMRV - also a retrovirus - is responsible for my ME but even before the XMRV debate I would not have considered donating blood - virally-induced neuro-immune illness seems a bit dodgy for my liking to be sharing your platelets. I would certainly not want blood from someone with ME.

Getting very bored with Simon

I'm so bored blogging about M.E, I would much rather talk about books but I get so fired up when I see the Wessely footprint, the denial still going on in spite of the robust responses to the last BMJ editorial on M.E.

This article on XMRV has appeared in BMJ, written by Professor of Retrovirology, Myra McClure, and our favourite Prof. of Psychiatry, Simon Wessely. I would guess that the paragraph below is Wessely's contribution (though I don't know this, but it has all the signs). He has reinvented himself as the caring, sharing doctor.

But if the research community was underwhelmed, people with the syndrome were not. If true, these (XMRV) findings would have transformed the understanding of the illness and opened up new avenues of treatment. Some saw this as a definitive response not only to those few professionals who, they claim, continue to doubt the reality of the syndrome, but also to the larger number of professionals who believe that, irrespective of causation, rehabilitative treatments can reduce symptoms and disability. It is depressing that the first, untenable, view is too often confused with the second, a perspective that offers hope to patients and is backed by evidence.

I have no idea if XMRV plays a part in my illness. I am just glad the research is being done and debate is going on so ferociously about its role in M.E. The truth will be discovered. This is how real science works. It's a million times better than the CBT/GET idiocy that is still being peddled - euphemistically referred to here as 'rehabilitative therapies'. (I'm sure this therapy helps those with poorly defined depressive/fatiguing illnesses, but that of course is not what M.E is. Yet the denial goes on, the reference to 'evidence'. Prof. Malcom Hooper was not exaggerating when he compared these strategies to those of Holocaust deniers in his recent 400 page report/complaint to the MRC.)

I know without doubt that Coxsackie B4 triggered my illness and that I have done everything in my power since 1983 to rid myself of this hellish condition. I know I have pushed myself too hard and caused major relapses. I know I have had relapses for no reason. I know that I am not clinically depressed. I know that pacing myself helps enormously - and is the only way I can function (at a greatly reduced level to normal), being intuitive, listening to myself, stopping when I know it is time, when my muscles burn. I know I have to sleep for at least 11 or 12 hours or I feel like hell. I know my life has been radically different to the life it would have been.

How do I know all of this?

Easy peasy! Because I am intelligent, because I experience this every day, I can work out for myself what is going on with my own body. No somatisation going on here, Prof. W, just a neurological illness. I wonder, Simon, did you read any of the responses on the Santhouse thread, or did you just skip over them 'cos they made you feel a teensy bit uncomfortable?

Invest in M.E comments on XMRV trials.

Dr Nancy Klimas on XMRV (again)

I realised my previous link wasn't working so am trying again with the South Florida News link. Dr Klimas is very watchable, and while excited about XMRV is not getting carried away. That I like. But the link is dodgy, sometimes it works, sometimes it goes into a big waiting loop.

Link between ME and retrovirus XMRV

Nice to see some actual science in the mainstream media re. ME, though the description of ME - long-term tiredness and aching limbs - is hardly accurate. It is often much more disabling than this. But, hurrah for the Whittemore Petersen Institute! And of course Wessely is in already with his poisonous oar. Go away, you tiresome little man, no one is listening. Just heartening to see scientists engaged in serious ME biomedical research getting to front page.

*It made the New York Times too.