Progress...

This is great news from Griffiths University in Australia: the National Centre For Neuroimmunology and Emerging Diseases (NCNED) has been awarded $4 million dollars to research ME. In this short clip, Professor Staines says: Exercise should be contra-indicated in Chronic Fatigue Syndrome as it worsens the clinical condition of the patient and should be avoided.

This, of course,  has been corroborated by patient testimony (though largely ignored) for decades. As my fictional character Helen Fleet, who has burning muscles at the drop of  hat, says: 'she has too much lactic acid in her legs'.

There is very fine research afoot -  the report from  the IACFSME last month in Florida.

And this: five teams of scientists awarded funds by Ramsay Award Programme.

This too: a great blog on the ethical failures of the treatment of ME/CFS in BMJ from Dr Charlotte Blease and Dr Keith Geraghty (a researcher who himself has ME). I love the term 'a caste system of illness' - I often speak of the 'casual racism' towards ME patients as if you can say what you want - any minor jab or slight is 'allowed' - because you don't really mean it (and also have no idea what you are talking about).

And Berkeley journalist/academic David Tuller, who has done so much to expose the PACE circus, is now illuminating FITNET in all its flawed and awful glory (Prof Esther Crawley's FITNET was excessively and misleadingly - unsurprisingly - reported in UK media a few weeks ago as it it were a cure for cancer).

In my early fifties, ill now for thirty-three years, I find myself even more hurt and angry at what people with ME have had to endure because of wilful ignorance. I hope with all my heart that the next generation of ill, young people will not have to suffer the insults we did and have effective treatments too if not an actual cure. (It beggars belief that in 1984, when my own diagnosis was confirmed with abnormal muscle biopsy and EMG, we had the nuts and bolts, right there, to build upon, but research was wholly hijacked in UK and taken in completely the wrong direction by 'belief-led' psychiatrists, one in particular, at the end of the 1980s).

I seem to collect inflammatory responses. After a cough from hell in August/September, I now have costochondritis, which is inflammation of the rib cage. One of the drugs I have tried is Nefopam but it cloaks me with nausea and makes me totally out of it  (I got on the wrong bus a couple of weeks ago and have probably now bumped into every 'obstacle' in my flat). I had never heard of costochondritis but it's interesting that those with fibromyalgia seem to be prone.

And something beautiful and cheering, a cat on a radiator, an iPad painting by David Hockney.

The pantomime of PACE

More nonsense from the PACE trial/biopsychosocial gang in mid-January. The BMJ and the Lancet and the Telegraph and the Times and the Guardian and the Independent and the BBC and god knows where else reported with varying degrees of ignorance and insult that people with ME were exercise phobic, as insulting a red rag as you can get. And they wonder why people with my illness feel hostile towards such  'research'. It's a fucking pantomime. The BMJ did not at first post my comment but a week later, it has appeared. You can see the other rapid responses too, though the fact it took them a week to put mine up is not exactly rapid (and my comment should read biomedical research consistently *ignored*, ignored is missing). Lots of great comments from doctors and patients and charities. We all keep saying there is a wind of change, that this idiocy has been stamped out, finally, and then they pull another mendacious rabbit out of the bag. Professor Trudie Chalder, one of the lead actors in the pantomime - but not the only one in a tightly-knit clique of offenders - has been gloriously satirised here, described as having an advanced degree in rocket science from the church of behave therapy. That sounds about right, considering the nonsense she comes out with. I was also amused to discover that chalder is an old Scots word for a measurement of grain. The possibilities are endless.

A wee girl that breaks my heart, & googling viruses 30 yrs later

There are so many images in a week that can break your heart, but this wee girl in Pakistan selling flowers has stayed with me.

*

An Edinburgh University book group is doing The State of Me and has invited me to chat to them. The chapters they have selected got me thinking back to the whole onset of illness, and I've been googling Coxsackie B4 (marvelling again how easy it is now to get information about an illness, about anything, back then it really was a case of going to the library, we knew nothing. And I still recall reading that Coxsackie could cause paralysis in young mice). Am fascinated to read about Dr John Richardson's work on ME and enteroviruses in north of England, am surprised I didn't know about him and want to order his book. The paragraph that stands out for me in the 2002 BMJ piece is:

Early on John believed that ME was an illness that could follow directly from a Coxsackie infection and one that was capable of altering the whole personality and abilities of someone he had known for years. The idea that it was just depression or hysteria, a psychoneurosis or “all in the mind,” he found not only ludicrous and cruel, but also dangerous, and his records contain several examples of suicide. When patients told him that they had grown tired after taking vigorous or progressively “graded” exercise and found that they had to pay for it by being much worse for the next day or so, he believed them and sought other methods of treatment. 

And it was after speaking to virologist Dr Eleanor Bell in Glasgow - referenced in the above article - that my mother got my referral to Dr Behan in  late 1983 - a year after I had become ill (I was by then nineteen).

And from Norway we have this recent fundraising video for  Rituximab research at Haukeland Hospital, featuring doctors and politicians. And in UK we have the gibberish of PACE and pretend clinics for ME. Thank goodness for the annual  Invest in ME international conference, coming up in May.

And here is more up to date info on ME and implication of enteroviruses (Dr Chia's work)  from the CFS Patient Advocate's blog  (the blog author's daughter has severe ME).

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...

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.'

Storytelling (6)

Interesting blog post here from BMJ - discussing the way we use metaphors to understand and describe illness. I left a comment and only later realised the author of the piece is a psychiatrist; my comment has not been published so perhaps he is of the Wessely persuasion, who knows (or perhaps he simply has not had time, I prefer to think that is the reason, but one never knows, these days). Professor Wessely, as we know, takes metaphors and illness a step further and actually declares the illness to *be* the metaphor itself. Quoting him from the Times, the weekend before last: “Like it or not, CFS is not simply an illness, but a cultural phenomenon and metaphor for our times.”

Yup. All getting a bit Elaine Showalter.

It's worth noting that there are, of course, fine psychiatrists - and psychologists - who fully understand that ME is neuroimmune and don't give us more grief to cope with than we already have - ie coping with the illness itself.

I also want to flag up Hillary Johnson's Osler's Web website. I still remember receiving my copy of Osler's Web in 1997, my brother had posted it to me from USA. It's funny, in my head the book is orange, but in reality it is only the spine that is orange, the cover is black and red with a little white - but my memory is of opening a package with an orange book inside. I went to Hillary's blog last night to follow up a comment I'd left earlier and was delighted that she mentioned she had very much enjoyed The State of Me, she calls it 'classy writing'.

In 1997, the year I opened an orange book that was not really orange, I'd only started thinking of the possibility of writing a novella - never imagining I would cope with a full length novel - about the illness. There is, interestingly, orange - the colour and the fruit - in The State of Me. It features a fair bit, no idea why. (Swans do too.)

This extract describes Helen Fleet's 21st birthday:

She has lots of cards with a dual message: Congratulations on the key of the door! Get well soon! She thanks everyone politely. Her arms and legs are injected with poison. She doesn’t have the strength to peel an orange. Her mother has made beef stroganoff (the cows haven’t gone mad yet) and fresh cream meringues. Helen has her birthday meal on a tray in bed. She has a sip of champagne. Jana sits with her and makes her put on her new lipstick. Helen feels like a clown, a grotesque invalid wearing bright red lipstick and titanium earrings.

* My comment on BMJ blog has been posted, so I am glad, not being censored, after all.

Storytelling (5)

More Wesselymania from a UK press apparently lobotomised when it comes to reporting on ME. Wessely jerks these health editors like puppets, it's truly obscene, this cartel of hyperbole and hysteria. We have been treated by the media to a cruel distillation of events since 29 July. Only one side of the story is reported. No mention of the abuse PWME endure from CBT psychiatrist militants. Really - why are Wessely and co still going on about these threats? If they have indeed come from a *tiny* minority of the patient community - why then the need to bleat to the media every week? The way this is being reported you would think these researchers were trembling for their very lives as we speak. Has the Science Media Centre secured Simon a slot in every newspaper every weekend 'til the end of time? (As someone said elsewhere the Science Media Centre is the Science Mendacity Centre when it come to the reporting of ME, which it constantly conflates with 'chronic fatigue'. And Simon, of course, sits cosily on the SMC panel.)

I also see he has changed his wording about Iraq, he is less glib now.

It is really time these people grew up, and left biomedical researchers to do the real job. If they want to research nebulous 'chronic fatigue' - apparently common! – ME is NOT common – that’s fine. But please leave those of us with neuroimmune illness alone and stop causing us harm with your obsessions and inability/refusal to embrace actual science.

And let's just remind Wessely and his disciples of the International Consensus Criteria for ME, published in Journal of Internal Medicine in July 2011.

From Abstract: The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).
And let's also remind them of a recent BMJ thread which the Observer writer must surely have missed when he was recycling - sorry, researching - this article.

Will adopting the Canadian criteria improve the diagnosis of ME?

All of us with ME - the neuro-immune illness myalgic encephalomyelitis - want the Canadian Clinical Guidelines to be universally adopted, so that when our illness is being diagnosed/researched,  we know it is our illness and not less complex, nebulous, 'fatigue syndromes'. It's hardly rocket science. The current chaos of criteria is why we have people all over the Internet claiming to have recovered from ME, touting nonsense about how 'believing they can get better, got them better'. It's because of hopelessly flawed criteria that these people have been told they have ME in the first place, or, more worryingly, may have diagnosed themselves. This is why we are so angry about the PACE trial, almost £5 million being spent on, well, nothing. (PACE used the Oxford criteria, devised by UK psychiatrists, which actually exclude neurological disorders, so that people who are burnt out/depressed/deconditioned can actually be diagnosed with ME. Yes, you couldn't make it up.) Dr Esther Crawley and others have revived the recent BMJ thread on ME and posed the question: Will adopting the Canadian criteria improve the diagnosis of chronic fatigue syndrome? The answer is, of course it will! Dr Crawley and her colleagues are - unsurprisingly - dragging their heels. Responses including my own here. I love how Dr Enlander, an ME specialist who practices in New York, subtley disses the Oxford criteria.

Thanks to Dr Speedy for the link to the Canadian Guidelines above.

***And here we have the recent 'International Consensus Criteria for ME' from the Journal of Internal Medicine, which highlights the ludicrousness of the term chronic fatigue syndrome. And furthermore suggests 'post-exertional neuroimmune exhaustion' as the key symptom instead of 'post-exertional malaise'. Hallelujah! They have my vote!

BMJ editorial on ME

Here's a recent BMJ editorial on ME by Fiona Godlee and my response (which has been slightly edited, I stated that Wessely and colleagues had conflated ME with chronic fatigue, but their names have been removed). We are illness of the week! There are three other articles: one by an ME sufferer Ollie Cornes, one by the deputy editor Trish Groves and one by a freelance journalist Nigel Hawkes, which is breathtaking in its distortion of events. We are being manipulated to feel sorry for psychiatrists. All the fun of the fair! The MEA has linked to the full articles here.

*I also now have a comment up on the Hawkes' article, also one rejected, (see below in comments). There are some excellent responses to Nigel Hawkes.

** I see Norway has rejected CBT and GET as therapies for ME. If this were the Eurovision they would get douze points!

***A brilliant response to Fiona Godlee by ME sufferer and former director, Caroline Davies.

Wise words from 1978!

The BMJ talked more sense on ME thirty years ago. Via Dr Speedy, a report from 1978 in which the author concludes: Further epidemics should be studied by a collaborative team of neurologists, epidemiologists, immunologists and virologists. Its findings would be important not only for the study of epidemic myalgic encephalomyeltis but also for other neurological disorders including multiple sclerosis.

Broken

A medical student in the BMJ describes the stigma that faces doctors who specialise in psychiatry. They are often viewed as reject doctors who couldn't do well enough elsewhere. I have never had to see a psychiatrist, though my view of them is somewhat jaundiced by the appalling abuse ME patients have had to face from the psychiatric lobby in this country. Still, I find it bizarre that those who seek to fix broken minds are looked down on by those who seek to fix broken bodies. But I know medicine is full of snobbery and hierarchy. My own father - a consultant anaesthetist - was detrimental about psychiatrists. This was the sixties/seventies and ironically he actually needed a psychiatrist but that is another story. And over the years I have - as a patient - heard different consultants be nippy about GPs. I recently read Direct Red by Gabriel Weston and the writer/doctor describes the astonishing arrogance of some high ranking surgeons (this is worth reading, albeit a slim volume and a little repetitive at times, but a great insight into the world of surgery). What arrogant doctors seem to forget - and I know there are many fine and lovely doctors - is that if people did not get ill they all would be out of a job.

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!

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.

Responses to Santhouse et al.

Some more excellent responses on the recent BMJ article on ME. (And they accepted my second one, having rejected the first.) My favourite responses are from A.F. Andrew, an Australian GP who has ME, and Guido den Broeder, chairman of ME/CVS Vereniging (Netherlands).

Magic: How to Make an Illness Disappear!

Am linking to  Professor Malcolm Hooper's complaint to the MRC: Magical Medicine: How to Make a Disease Disappear. And thanks to Nicky for pointing out the report to me in the first place. Wonder if the boys at BMJ will be reading Professor Hooper's words...

More balls, but in this way:

Balls!

The ME Association has helpfully posted the full text (linked to above) of a charming article which appeared in BMJ recently: Defeatism is undermining evidence that chronic fatigue syndrome can be treated. You can read responses here. I have submitted a reply but it's not up yet.

Am not wasting any more energy on these wilfully blind psychiatrists and their self-important commentary, and reliance on NICE nonsense.

(I would re-title the BMJ article as Psychiatrists' delusions and lies are undermining the progress of biomedical research into ME.)

Sheer frustration

ME Association's response to BMJ on NICE judicial review.

BMJ (which advertises its aims as 'providing rigorous accessible information that will help doctors improve their practice') extract is here.

I have just left a comment.