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.

Too much lactic acid in her legs

In my novel,  the main character Helen Fleet has a series of sarcastic/humorous exchanges with a stranger. Describing how she feels after trivial exercise (remember this is the eighties), she says she has too much lactic acid in her legs.

This has been validated in research reported in the Times the other day:  Professor Julia Newton's study found that PWME produce up to 20 times more lactic acid than healthy controls: 'The finding shows ME leads to a cascade of physical changes right down to the cellular level.' Consultant neurologist Professor Peter Behan, of course, discovered muscle/mitochondrial abnormalities in 80s and 90s. (I had a muscle biopsy in late 1983 - and EMG and specific Coxsackie tests - to aid his diagnosis. He told me I had a 'full house of abnormalities'.)

It is indeed heartening to see biomedical findings being reported responsibly in mainstream press. We have become so used to pejorative, ill informed articles, and PACE nonsense. I think - I hope! -  we are actually now, in the UK, looking at a horizon of proper research, where my illness will be granted the respect it has been denied for too, too long.

The biopsychosocials' position in denying  reality - conflating ME with 'chronic fatigue' for decades - trying to label a neuroimmune illness as a mental illness - is simply untenable. They will be seen to collaborate with serious scientists, then they will hopefully retreat from the scene altogether. I would prefer the 'biopsychosocialites' were nowhere near this new 'big tent' of research, but at least we can keep an eye on them, hopefully they will stay in a corner and practise their witchcraft quietly. This conflation of physical illness with mental illness has helped no one. I think the truth has finally dawned on them. They will, of course,  never admit they were wrong about ME. How could they?

This  new Science Media Centre collaboration is nicely explored here  by  Invest in ME.

I welcome all research into properly defined ME, and sincerely hope we are turning a new page. I don't want to have to live another thirty years without effective therapies.

* A good summing up of the state of play here by Simon McGrath.

Rickshaws and dizziness

I just love these rickshaws, though I haven't read the whole article. And I get pangs when I read about Karachi Literature Festival, I want to be there! If I could have the damned vaccinations, I could just go everywhere in one of those gorgeous rickshaws. And if I lived near Newcastle I would definitely take part in this research: Professor Julia Newton's looking at orthostatic intolerance and also cognitive impairment. Not being  able to stand for long is one of my worst symptoms, one of my most frequent phrases being, I need to sit down.


* A roundup of the Karachi Lit Fest, it all looks fab (except for Gorgeous George; it peeves me even more that he was there and I can't bloody go). Interesting short clip: Ameena Saiyid, Managing Director of OUP-Pakistan: 'You can't really separate literature from politics'

**Just had lovely email from a Canadian reader who 'thoroughly enjoyed' The State of Me. She is involved in research at the Complex Chronic Diseases Clinic. Her doctor is one of the signatories to the Open Medicine Institute initiative.  There are, undeniably, fabulous minds all over the world firmly engaged in getting to the bottom of this illness that stops me from having vaccinations and going to where half of me is from. This is science, the opposite of nonsense (non-science) that gets knighthoods and medals (see ME Association's response to PACE trial's claims of 'recovery').

***And a very informative post on the background to the Karachi Literary Festival  from writer Bina Shah.

Sticks and stones

It is, naturally, best to ignore this kind of thing: manipulative half-truths - the second instalment - from media psychiatrist Max Pemberton (Max claims to have followed the medical literature on ME for years -  maybe he means those papers authored by consultant psychiatrist Simon Wessely, for he certainly hasn't learned much); and this a - deliberately inflammatory - piece from Max's friend, a Telegraph journalist I'd never heard of. Wessely's influence is, of course, waning drastically, so Max has to come up with spasms of sensationalism, lest we all forget that people with ME are militants, armed and dangerous, though he stresses - Max really cares about ME sufferers, you know - it's 'a very small minority'. Yet, he still feels the need to write a whole column about it, again, and is still, perplexingly, banging on about ME and its 'psychological component'.

First instalment is here, where Max informed us with not a trace of irony that 'it wasn't until psychiatrists such as Professer Wessely started treating the condition psychologically that real progess was made'. And they wonder why people with ME get upset! (You would think as psychiatrists they would understand that denying a patent's reality for years and years and years is not often met with joy and love.) I would say that the only 'psychological component' of ME is the constant misrepresentation and undermining of patients by this core of psychiatrists.

Let's revisit Professor Malcolm Hooper's words from last year, when 'The Threats' saga was in full swing: No right-minded person could condone any campaign of vilification against scientists (“Chronic fatigue syndrome researchers face death threats from militants”; The Observer, Sunday 21st August 2011); equally, no right-minded person could condone what psychiatrists such as Professor Wessely have done to the UK ME community for the last 25 years. 

This weekend, I realised that I've been ill for thirty years, almost exactly to the day. Max apparently hasn't heard of Coxsackie B4, or read Dr Melvin Ramsay's book, but there was an outbreak in the west of Scotland in eighties. I must've picked up the virus before going off to France for my university year abroad, I'd worked as a waitress that summer, maybe that's where I got it, I'll never know. I was  forced back home from France, six weeks later. I remember like yesterday the catastrophe of having an illness I'd never heard of punch into my life, and my family's life. I remember the trailing back and forth to the Southern General neurology clinic, where  ME was eventually diagnosed, feeling as if I were dying. I remember the peeling orange chairs. I remember the bag of plasma on my lap, as I waited in a wheelchair to be taken back to the ward. I had a plasma exchange and immunosuppression as one of my first treatments, albeit experimental. The woman in the bed next to me had myasthenia gravis.

It is therefore doubly upsetting to see the toxic comments that are still out there - resplendent like  bunting - for people with my illness.  You'll find obnoxious, uninformed twonks on virtually any online discussion thread, it goes with the territory. But I find the ME ones to be dazzlingly spiteful.

In the Telegraph thread, I saw ME referred to as 'lazy cow syndrome' (LCS). Sufferers referred to as 'fruit loops' and 'rent-a-mob'. I was told I had 'a supposed disease', and someone else said I wasn't 'a viable source' of information on ME (whereas Jeremy Kyle fan Max Pemberton is). It is so very dispiriting - once again - to see how the distorted narrative of this illness has been so easily swallowed by (apparently) intelligent people, people who have no clue about the history of the prejudice we have faced. People with no curiosity about the truth, just a propensity for being glibly cruel.

I was particularly jabbed by  a tweet from some Canadian editor: They're just as eager to have a neurological illness as multiple sclerosis sufferers are not to have one!

Ha ha, that's so fucking funny! I bet all his followers fell of their chairs laughing. But he - like the others - can say this with impunity, and he may even be applauded. You can mock people with my illness and it's fine and dandy, we are a fair target, you see.

He obviously hasn't heard of the Canadian Clinical Guidelines.

Or the International Consensus Criteria 2011 ('Myalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions').

But then neither has Max.

It is, of course, the hijacking and redefining of a neuroimmune illness by UK psychiatrists since early 90s that has given anyone and everyone a free pass to this kind of casual abuse of people with ME. It is nothing less than verbal thuggery. And it is unacceptable. No other patient group in the world would be expected to take this. But they are clever, the biopsychosocial brigade (or medical mafia as my mother calls them). They have distorted the narrative so much that you can't now defend yourself without being labelled an 'armed militant'  or 'paranoid obsessive' (the latter from another charming Canadian tweeter). 

These people who indulge in detrimental, offensive commentary online aren't important and would be full of shame - I hope - if they actually understood what they were saying, but it is soul-destroying when you read them. Soul-destroying that such wilful ignorance remains. The childhood refrain, Sticks and stones will break my bones but names will never hurt me, has been going through my head,  and I am trying today to live by it - perhaps a child-like impulse.

MEActionUK penned a fine response to the Telegraph but it will doubtlessly not be published, because it contains truth, and the media is not too fond of accuracy when it comes to this illness. Health editors, indeed a fair few UK editors,  have been complicit in sustaining  the half-truths of this ME medical mafia.

I console myself a little that the MRC is finally  - not before time - funding much needed biomedical research, but this weekend it felt like we were living in a cave. And I am just so glad - though sad that I've been ill for so long - that I ended up in the safe hands of a neurologist. These ME psychs truly frighten me.

*I forgot to include this: Max's journalist friend refers to Showalter's 'brave and brilliant' book 'Hystories' (really, you couldn't make it up, brave and brilliant). It's unlikely he's actually read it, it came out in 1997 and is old news. It seemed to me more likely he'd been advised: Mention Elaine Showalter that'll really get them going, show them to be the rabid militants they are! My main thought was, Has Elaine not been abucted by aliens yet? One can only wish.

** One last thing: if I were mentally ill I'd happily be referred to a psychiatrist, but I'm not, so I prefer to stick with neurologists, virologists, immunologists, etc  the people who may  actually be able to help me.

*** An interesting overview of the ME situation from Valerie Eliot Smith, with links to current research. Well-written, calm post, though I think Valerie is a little too gentle on the psychs.

Books & snails & MRC behaving badly

Great to see that The Sound of a Wild Snail Eating by Elizabeth Tova Bailey has won the Stanford 2012 William Saroyan Prize for writing. (I have hazy/fond memories of Stanford, my brother studied there many years ago). If you google Amazon and 'myalgic encephalomyelitis', there's an Aladdin's cave of books, the quality varies greatly, but this is easily one of the best. It's a gem and made me think differently about snails, this one was on the shed for a few days last month.

Nice to have some good news round this illness after the latest nonsense from the MRC, which should really get a gold medal for misrepresenting neuroimmune illness. Seems to have changed its tune - or gone back to the same old same old - since its last outing. It really is a kind of medical mafia. (I love Dr Derek Enlander's comment: The thrust of financial gain perhaps to the insurance companies and the government were priorities rather than improvement of the patient condition. Little was mentioned about the relapse that we frequently see in ME/CFS patients after exercise. This was also illustrated by Dr Shepherd’s figures. Presently we are studying pre and post exercise immunology, pathophysiology and genetics in a study at Mount Sinai Medical School, New York in a privately funded million dollar grant.)

And more here on narratives of illness, a post from 2011.

Tra-la-la la-la

The Medical Research Council (MRC) is finally wising up, it would seem, just a shame it has taken thirty years, and so much damage done, but it's now seeking to fund more biomedical research: ME Association has the details.   (I can't help thinking that the MRC probably feels it should get a Blue Peter badge for its charming recognition of ME as a neuroimmune illness but that's just me being jaded and cynical (I wonder why).)

And I found this review of The State of Me, had not come across it, very pleased that the reviewer considers that 'the success of the novel is due to Nasim Jafry's wonderful voice, which is wry, consistent, clever, and observant. A few carefully chosen details convey a great deal'. 

MRC - finally - funds biomedical research into ME

Better late than never the MRC has revealed who is getting the £1.5 million for biomedical research into ME (just a shame it wasted £5 million on PACE). The Sjogren's seems a bit added on, and I am not sure how they overlap (do Sjogren's patients also have post-exertional exhaustion, the hallmark symptom of ME?), but it's  more welcome than the irrelevant studies on ME the MRC usually funds. I am pleased about the mitochondrial research (though it is unclear whether they are directly using PWME!). Also, not so sure about the sleep aspect either, even after a good night's sleep - not disturbed - you do not feel anything like normal, though I agree that insomnia/disturbed sleep is hellish. So, seems a bit of a higgledy-piggledy assortment of research, but in UK we have to be grateful for every crumb of recognition we get, and that they are not ramming harmful therapies down our throats.

I also  note that that MRC states: 'in response to the high quality of the applications received, the MRC decided to provide an extra £150,000 to support the package of successful projects.' This is no doubt a mealy-mouthed way of saying it wasted £5 million before, and that it never used to fund high quality applications but  now it is going to start, as it can't honestly get away with funding psychosocial nonsense any longer.

*More on the University of Liverpool mitochondria research, I am heartened by this project, but please ignore the press release photo of the  obligatory well-groomed, tired woman with laptop to represent ME.

** University of Newcastle press release on its MRC funding.

Fighting fiction with fact

Just curious: have any of the PACE scientists or journalists who parroted their misleading results apologised to the world's ME community yet - they must be aware of the international condemnation being expressed? No, I didn't think so. And here's the pornography itself, the full text of the PACE trial, thanks for link to @forcedout99. Early on, these good scientists inform us: Myalgic encephalomyelitis is thought by some researchers to be the same disorder - as chronic fatigue syndrome - and by others as different with separate diagnostic criteria.1,2. (But we're going to perpetuate the confusion anyway and spend £4.2 million and have our results applied to people with neuroimmune ME by NICE and all the powers that be. And we're going to further confuse GPs on how to treat people with ME. And we're going to recommend therapies that are actually dangerous for PWME.)

And to balance out the nonsense, an excellent letter to Paul Burstow MP who failed spectacularly last month to understand the difference between ME and CFS during a parliamentary debate (see how the obfuscation obfuscates, those psychiatrists are clever!). The letter is from two ME sufferers (one of whom is Andrea Pring of the very informative Dancing with the Sandman blog, in my sidebar) and is linked via the unstoppable Dr Speedy whom we all know and love.

Okay, tomorrow is March, spring seems to be here and I don't want to give these PACE people another minute of my energy or time. I've fought them as much as I can. They are wrong. I'd rather think about crocuses, so cheeky and robust, the way they get here in spite of the snow. End of story (I wish).

* As a little ps, Wessely argues that 'ME is a belief' in 1994. The actual treacherous lecture notes and not a mention of Dr Melvin Ramsay when referring to Royal Free.

** Whittemore Peterson Institute for Neuroimmune Disease on PACE trial.

Holding on to power - how do they do it?

The more I think about the PACE trial, the angrier I get. I am highlighting the excellent comment left by sylvieromy on Sunday's post :

I think this fight needs to be fought differently. Something as transparently skewed as the PACE trial shouldn't be able to turn back progress as easily as it has. It seems to me that there are individuals (eg. Prof Hooper and M Williams, Countess of Mar, Ian Swales) working really hard to question the abuses of the psych lobby at a high level, but they seem to be sole voices in the otherwise silent wilderness. I think these individuals need to be more strongly supported by others with power - the list of MPs who signed the EDM 778 gives a pretty good clue where some of that support might lie. The psych lobby work very effectively as a group and their influence pervades groups like NICE and MRC - groups have a strength that individuals don't. We are supported by individuals who, as magnificent as they are, can be dismissed; instead, they need to be far more vociferously and unswervingly supported by others with power so that the groundswell of concern about how PWME are treated becomes deafening and unavoidable. It also seems to me that questions about the psychs inexplicable involvement in ME have been raised many times in Parliament but to no avail. Why? Why do these questions never lead to change in the psychs' central involvement in ME? I think this is a crucial question - how is their power being maintained, no matter how faulty or disproven their approach? If their hold on power could be diminished, we would have more success. Something is maintaining their power, and those with more power and energy than we do are best placed to unpick that and set the whole arena free of their poisonous influence.

So if you have not already contacted your MP about EDM 778, please, please do so. No guarantee they will sign but it may currently be our only way of toppling these bizarrely powerful self-appointed 'experts' on our illness.

Also, just saw this from the MRC press release - Dr Declan Mulkeen, director of Research Programmes said: There is an urgent need to find ways of improving the healthcare and quality of life for patients with CFS/ME, and the PACE trial is a great example of how MRC-funded research can evaluate treatments and help to bring them to patients as quickly as possible. The MRC’s next step is to support further high quality research proposals in this area and we are committing £1.5m to encourage research that looks at the root causes of the illness.

A shame, Declan, that you hadn't spent almost five million on finding the root cause of the illness, instead of all this psychobabbleGETtwaddle. Really, how long do you all think you can get away with this infantilisation of people with ME???

And we have this little joke: For almost 100 years the Medical Research Council has improved the health of people in the UK and around the world by supporting the highest quality science. The MRC invests in world-class scientists.

Yup, my sides are splitting with laughter .

These 'world-class' scientists claim that pacing is not helpful, yet pacing is how we fucking survive. We pace because we have to, not because we think we have to. If we don't pace, we relapse and go back to being bedridden. I always have post-exertion pain and exhaustion. Always. But these 'world-class' scientists want us to push ourselves to do more and risk catastrophic relapse.

Fabulous.

Thank you, MRC, for funding our harm. Well done indeed.

And I am late to these links but have just not been able to absorb them all. ME Association's response, Action for ME's response (I see they have crossed over from the dark side to join us), Invest in ME's (re-linking cos it is so damned good).

And as an antidote to all the lunacy, a quote from Dr Melvin Ramsay, his excellent book, published in 1986, was the first text I owned on ME. From pg 31: 'The prejudice harboured against those of us who hold the view that ME is an organically determined disease defies rational explanation.'

The evils of psychiatry aka the PACE trial

The architects of the PACE trial appear to be very confused - they cannot tell the difference between neuroimmune illness and psychiatric illness. Or maybe they are just evil. I am not even going to link to the published research, it would be like linking to medical porn, I am so angry and disgusted, but really why should we be surprised at their orgiastic cries of CBT and GET? I am equally disgusted at the Guardian for publishing these results as if they had even a grain of credibility. Okay, we can't educate the psychiatrists - denial of neuroimmune ME is their goal and nothing will shift them. And make no mistake, this is about patient neglect, clinical apartheid, deliberate obfuscation. These psychiatrists have made it their career to deny that ME is neurological, they think they can force us into recovery because CBT and GET are cheap to deliver. I wish we could ignore them, treat them as the mad cartoon professors they are - with their treacherous fingers on the CBT/GET button - but incomprehensibly and shockingly the 'expertise' of these vandals still ladders its way down to NICE, the NHS and the DWP. We have to keep fighting them, we have to. However, I am quite honestly, all out of fight at this time and I can't afford to be this stressed, it was undoubtedly the stress of my book being published that led to my developing uveitis and I try to avoid stress as much as possible now. I dread a recurrence of uveitis and I simply can't allow these PACE bastards to get to me. And we can't stand in our city squares for eighteen days - at least, not without CBT and GET miracle cures!!! - but we can try and educate health editors, make them see the truth behind the PACE trial. So, please tweet @TheLancet, @sarahboseley (The Guardian: Study finds therapy and exercise best for ME) and @martinbeckford (The Telegraph: Exercise and therapy can help ME sufferers, study claims), @bbc, and any other editor who published this nonsense. Try and make them see sense and maybe they will think twice about publishing such harmful research on our illness in future. (I don't see a Twitter account for the Indy health editor Jeremy Laurance (Got ME? Just get out and exercise, say scientists) - if anyone knows, please tell me.) Maybe I'm shooting the messenger here, but all thanks to such irresponsible, sensationalist media, the concept of ME as a psycho-social illness is now lodged in the public consciousness again. So tweet these editors the link to the letters Professor Hooper wrote to the MRC. Or tweet them one of the many articles on the flaws of this farcical, dangerous PACE research that didn't actually fucking use patients with neurological ME (brilliant statement from Invest in ME linked above). Education, education, education!

MRC & biomedical research

Well, well, well: the MRC is giving £1.5 million to ME research. Discussion over at MEA. And biomedical research is being debated in House of Commons on Wed 2 Feb at 4pm, led by Lib Dem MP Ian Swales (not all Lib Dems have lost the plot!). This will be interesting - I hope it is well attended. Should be on BBC Parliament. I wrote to my MP yesterday asking him if he would be attending. I also wrote three years ago expressing my fears about NICE and the MRC and the lack of biomedical research. I got a very lengthy response via the then health minister Alan Johnson. Alan assured me the MRC gave consideration to all high quality applications. He seems like a nice guy so maybe he just didn't know the truth. Let's hope things are really changing. With all that is going on in Egypt it is hard not to feel fired up, not to believe that resistance can bring about change (though Mubarak's hanging on). We thankfully live in a democracy but those of us with ME have been living under a bizarre medical dictatorship for too long. It's all about the imbalance of power. I hope the MRC is not just making an expedient gesture and it actually believes in robust biomedical research into ME. I wish I was (were? I'm never sure about the subjunctive) not nagged by doubt.

Also, want to say that Mischa Hiller's second novel is out. It's called Shake Off. Mischa's website is here. (Mischa has ME and it is quite fabulous that he has a second book out.) He also writes about the imbalance of power.

Awareness

Today is International ME Awareness Day. Those of us who have ME are very aware, but sadly the rest of the world is still not as aware as it should be, this, in no small way, thanks to the illness having been hijacked by psychiatrists and others in the psycho-social brigade, all over the world. For an update on recent research best to go to the eloquent and beautiful Greenwords, I would just get worked up and pepper my post with F words. (But I would like to draw attention to the almost £1, 150, 000 wasted by MRC on the FINE (Fatigue Intervention by Nurses Evaluation) trial.)

Also, if you have not already signed up to the What About Me? documentary updates, see here. They are on Twitter and Facebook as well as Blogger. Double D have a questionnaire about the film they would like people to submit.

I'll be asleep when this post publishes but it seems we are now being ruled by a bunch of fox hunters (don't know the details, how involved the Lib Dems are going to be). I know a 'progressive rainbow alliance' was perhaps idealistic, untenable, but the Tories are the party of self-interest, whichever way you look at things. And my heart is sinking.

And whatever your views on Gordon Brown, his resignation speech was moving and dignified. I was in tears even before his wee boys came out. The Labour Party website has just crashed with twenty people a minute trying to join.

I would like to finish with a quote from my novel, it seems timely:

Extract from Chapter Thirty-three, 1997

*

On election night we sat up whooping as the Tories fell like skittles. Ivan went to work after only two hours' sleep. I made a celebration dinner.

Things can only get better!

*

Return to sender

The BMJ advertises itself as 'helping doctors make better decisions'. I'm sure it achieves this often, but I fear when it comes to ME, this is not the case, although following the furore over the recent editorials on ME, the editor does here highlight the difficulties present in the diagnosis of and definition of the illness.

But if the BMJ wants to help doctors make better decisions why has it not drawn attention to Professor Malcolm Hooper's recent letters of complaint/reports to the MRC, and NICE chairman, which describe in detail the medical and political skulduggery that surrounds ME, specifically the flawed MRC-funded PACE trials?

Chillingly, NICE chairman, Sir Michael Rawlins, returned the report (which makes fascinating and disturbing reading), you can see his curt response here. In turn, Prof. Hooper responded: ...To be faced, yet again, with the denial and dismissal of the comprehensive amount of biomedical evidence about ME that has been presented in some 5000 published and peer-reviewed papers is disturbing and has sinister connotations devoid of any compassion. And why nowhere does the BMJ mention that MRC files on ME are being kept under lock and key til 2071? Would it not be helpful to doctors to know the extent of the skulduggery?

And how many doctors just skim through the printed edition of the BMJ when it lands on their doormat, how many would actually take the trouble to look up the online responses, unless they were already interested in ME? Those who just skim - most of them, I guess - will be left in little doubt, I'm sure, from recent editorials and printed letters - this one from a doctor who recovered fully after CBT/GET - that ME is eminently treatable with 'rehabilitation' and the right attitude. And so the Wessely band plays on, largely unchallenged by the establishment.

There is a BMJ podcast here, featuring Simon and his rehab techniques. He's about 4.25 mins in. He reappears at end - 23.25 mins - with the gem that 'other disciplines should get more involved because CFS is under-researched', and is actually a 'very enjoyable and very rewarding' area of research.

Nothing could possibly upstage Simon's podcast, but here is a splendid rapid response to the BMJ editor - from a psychologist. Hooray for wise psychologists!

Reasons to be Cheerful (The Gibson Report)

I could kiss Dr Ian Gibson MP for the recent report on the desperate need for biomedical research into ME/CFS in the UK. He is indeed a bright angel amongst the frightening individuals (those medics, mainly psychiatrists) who continue, incomprehensibly, to proclaim themselves as experts on this illness. The most recent culprits are the angels of darkness at NICE (National Institute for Clinical Excellence), who have just drafted very dodgy proposals for the management of ME/CFS, based very much on the psychosocial model of the illness. Dr Charles Shepherd, the medical advisor to the ME Association has welcomed the Gibson report and rejected the NICE proposals as 'seriously flawed and unfit for purpose'. Sadly, the NICE guideliners seem to think something is true just because they say it to be so - they wilfully ignore patients' testimonies; they deny the results of the biomedical research that is currently going (no thanks to the MRC which blatantly favours psychosocial research into ME, all jobs for the boys, I say); and they cheerfully ignore the World Health Organisation's classification of ME as a neurological illness. They claim they want to educate us in 'recovery from viral illness' - they still refuse to accept that we have failed to recover normally from a virus because something catastrophic has happened in our bodies, something biochemical! The ME Association suggests that NICE's credibility will be severely tested if these guidelines go through in April of next year, and wonders if NICE is 'living in the real world'. (But then this is the same organisation that has stopped Aricept being prescribed on the NHS in spite of it having proven benefits for people with mild to moderate Alzheimer's disease. I can think of another name for NICE, and it's not the National Institute for Clinical Excellence. I prefer to think of them now as the National Institute of C**ts and Eejits.) When the Chief Medical Officer declared ME to be a real illness in 2002, it was a giant step forward, but if these NICE guidelines go through, we will have taken ten giant steps backwards. However, the day will come when these deluded practitioners, these fairyland dwellers who champion CBT and graded exercise for fuck's sake, will stand in the corner with dunce caps on their head. I would bet my life on it. As one ME T-shirt slogan cries: Cut the Crap, Do the Research!

Update: Feedback on the Gibson Report.