'One Of Us Cannot Be Wrong'

'One Of Us Cannot Be Wrong' is, of course, one of Leonard Cohen's (many) fabulous songs. I've had it in my head since The Lancet published its editorial the other day on the hugely negative patient response to the PACE trial:

...But one cannot help but wonder whether the sheer anger and coordination of the response to this trial has been born not only from the frustration many feel about a disabling condition, but also from an active campaign to discredit the research...

Oh for Jesus' sake, patronise and demonise us some more, why don't you?!

The Lancet received forty-four letters of complaint and published eight. It did not publish any from patient charities. Here once again are the ones rejected.

Dr Speedy, as always, has a wonderful take on things.

So it goes on, a handful of (biopsychosocial) researchers v. patients worldwide disagreeing passionately on the safety and efficacy of graded exercise and CBT for a neuroimmune illness that has torn up many of their lives.

As Leonard says: One Of Us Cannot Be Wrong.

***Cheney P, Orlando Workshop, International Congress of Bioenergetic Medicine 1999, audio tape #2 (“The most important thing about exercise is not to have them do aerobic exercise. If you have a defect in the mitochondrial function and you push the mitochondria by exercise, you kill the DNA”).

******If you are on FACEBOOK, please take a few minutes to vote for Whittemore Peterson Institute, it desperately needs funding. Nicky has clear instructions on her blog! Many, many thanks. The PACE trial wasted almost £5 million pounds on psychobabble, just think what biomedical gems that money could have unearthed.

**********Oh, it just gets better and better. I had wanted this to be a short post, I am so fucking exhausted with PACE and its fallout. Now we have them telling Professor Hooper that the trial was never about ME but about the much more nebulous 'chronic fatigue'.

Really, these PACE people should come up to Edinburgh and get a slot in the Fringe comedy circuit this August: the blackest medical comedy ever written and performed!

************** Countess of Mar wins award for outstanding services to PWME

Tweets & Kindles & Tulips

Am almost afraid to blog after the last few days of chaos, previous comments still not restored, but I just want to link to an excellent post by Johan Mares. And this is positive news too. I felt like I'd been on a demo on Thursday night after tweeting for #may12th (reading tweets is energy consuming too, a cockpit of information), and I was pleased that Marco Biagi (newly elected MSP) and AL Kennedy (one of my favourite writers) RT'd one of my tweets, but of course the health editors ignored me, they ignored all of us. Someone remarked that Richard Horton (The Lancet editor) has his head in sand, I would like to suggest that his - and all the PACE supporters' - is somewhere considerably less pleasant. This is a timely article on the editing of health journals: 'Are journal editors like used car salesmen?'

The Kindle version of my book was briefly at #92 in literary fiction, I guess it spiked as a result of tweeting. I am told that Kindle is now 80% of market (of ebooks), though when I see one on the bus - kind of infrequent up here - I still think it has something of Star Trek about it.

I went into the garden on Thursday evening - post-demo - even though it was very windy, I needed air. My arms felt like rags, and my head had that horrible heated up, inflamed feeling. The tulips were streamlined by the gusts and made me think of a dog's ears being blown from a car window. They made me smile.

International ME Awareness Day

I tried to integrate this image with my post below and all hell broke loose, my fonts have gone crazy, that's why yesterday's post may look like it has been typed, it has that strange typewritery font (though it may have been fixed by now). Anyway, hope the sentiment is still clear. All you unenlightened politicians and health editors and doctors out there - and there are good ones among you too, I know that - time to take your blinkers off. If any of you were unlucky enough to succumb to ME you would not be in the jobs you do, you would instead be fighting for recognition the way all of us with ME are. As Invest in ME said recently, addressing Richard Horton, Lancet editor, 'ignorance is not an option'.

Ignorance about ME is unacceptable when you are editor of The Lancet

I was updating my sis-in-law on PACE at the weekend and she said: 'Why are they doing this, what's in it for them?' I replied: 'I think they are in so deep with their lies, it is just easier to keep going than stop and say, Look we have been wrong all along, we are sorry.' My sis-in-law is German and she often refers to my 'pudding legs', meaning 'jelly legs', it always makes me smile.

Yesterday, I listened to Richard Horton, the editor of The Lancet, defend the PACE trial on an Australian radio programme. Horton described detractors of PACE as 'a fairly small, but highly organised and very damaging group of individuals who have ... I would say... actually hijacked this agenda, and distorted the debate ... so that it actually harms the overwhelming majority of patients'. (The irony, of course, is that he could be describing CBT/GET psychiatrists. And most people with ME are passionately against the bogus science of PACE, we are not a small group.) He went on to express his disdain for protestors for 'undermining the credibility and integrity' of the conductors of PACE.

And what about the PACE scientists undermining the credibility and integrity of patients with ME? (Got ME? Just get out and exercise, say scientists, The Independent, 18/2/11)

Meanwhile, Professor Sharpe had earlier said in defence of CBT and GET: '... you can actually make some changes in your illness, you don't just have to lie back and wait for time, it's worth a try ...'. It's that deadly little phrase that gives away the profile of these people: 'You don't just have to lie back and wait for time'. How dare he! Maybe if I had just lain back and waited for time, I might be more recovered than I am today, twenty-eight years after getting sick. I know from experience that increasing exertion/exercise is harmful, I know pushing yourself beyond limits results in catastrophic relapse. (But I have neurological ME, not idiopathic chronic fatigue, so PACE is meaningless for me, contrary to the belief of its architects.)

What is disturbing is that if you had listened to this interview knowing nothing about ME, Michael and Richard could have come across as reasonable, rational medics - though Richard does at times seem petulant - while the ME population and its advocates are portrayed pretty much as rabble-rousers. The lack of balance is quite alarming. (This is reflected in the comments on the show's website. Why was there no patient representative on the programme?)

Invest in ME have now invited Richard Horton to the 6th Invest in ME International Conference, suggesting to him that such ignorance about ME for someone in his position is simply not an option. And Professor Malcolm Hooper has just published his official complaint to The Lancet online, which Richard referred to as a '43-page diatribe' during the Australian interview. I also see that The Lancet has just rejected the ME Association's letter of complaint about PACE.

And I thought an editor's job was to edit not censor!

***I would like to add that I just saw that Richard Horton had in March 1997 written an article for The Observer's Life Magazine, entitled Why Doctors are Failing ME Sufferers' (scroll down to Alison Hunter Memorial Foundation link to see the full reference):

Horton acknowledged that "today, physicians do not take kindly to being challenged. They feel defensive and insecure. They have become accustomed to unqualified respect and genuflection. Nowhere is this trait more obvious than in the treacherous swamp of confusion that is myalgic encephalomyelitis (ME)". Outlining the objections of the Royal College's Committee to the term ME as an unsatifactory label, Horton noted "they used this semantic quarrel to establish a cardboard case against the idea that chronic fatigue syndrome is an organic brain disease."

What on earth, we may very well ask ourselves, has happened to Richard Horton's critical faculties in the intervening fourteen years?

Full transcript of radio interview here via ME Assoc.