Lining up

When we were kids we lined up our Easter eggs on the window sill in order of size. By the time you took the egg out of its enormous packaging it was half the bulkiness. Separating the chocolate halves without breaking them was a skill. And finding the wee packet of smarties, or other treats inside, always such a thrill.

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.

Moon

It is not a good time - especially in the UK - to have the illness known as ME/CFS, we are surrounded by grotesque characters, it feels like being in a corrupt fairytale, where the baddies are winning, and the ill people are losing. It is demoralising to say the least. Still, I try to focus on the small, good details in my life, I always have done, even during my worst times of illness. My nephews were at my mother's this weekend, it was sunny and warm, wonderful. In the evenings, we read TinTin together, I was Professor Calculus. I have never read TinTin before. And last night, the moon was beautiful.

Professor Jose Montoya of Stanford University

Professor Jose Montoya of Stanford University: 'In my view, chronic fatigue syndrome is another form of death...' 5.45 mins in.

And here we have - the opposite of science - a lamentable, patronising defence of the PACE trial by Vivienne Parry.

Bad attitude

Interesting article on how ME is often perceived by doctors when you are consulting them for something unrelated. I recall a few years ago being given some test results by a consultant, they were normal, my book was about to come out, this was in my notes - when I told him what the book was about he did some internal shifting and said something like, Off you go now and enjoy life as if I were a five-year-old child who had grazed her knee. The word ME not only had zero impact, it had negative impact. I was furious afterwards, the way he had dismissed twenty-five years of serious, life-changing illness. He, of course, would - I hope - have no idea of the profound insult he had delivered me, he was just hopelessly misinformed about ME.

In her article above, Toni Bernhard, author of How To Be Sick: a Buddhist-inspired guide for the chronically ill and their caregivers, speaks chillingly of how a doctor 'disengaged' with her during a consultation as soon as she mentioned she had CFS. It's scandalous that we as a patient population still have to put up with this nonsense. If I had told the charming consultant I had MS, I imagine his response would have been very different. When I first moved to Edinburgh I had to 'shop around' to find a GP who believed in ME - this was mid-nineties. One woman I had a pre-registration consultation with told me I was too thin, asked did I eat enough, and made it very clear that 'she did not believe in ME, but she couldn't speak for her colleagues'. I left with a lump in my throat, consumed by anger and hurt at being treated so unjustly. It's exchanges like this that nick like paper cuts and after a lifetime, they turn into sores. Like most people with ME, I have a list of such stories.

And the PACE scientists have just reinforced this erroneous belief that ME is not a serious neuroimmune illness, but one that is reversible, curable by 'words and walking'. One of my favourite moments of the NIH workshops was when psychologist Fred Friedberg, in response to a neurologist's question about Chalder et al's claims to cure ME, dismissed the 'UK studies' as 'inflated claims'. It's 118 mins in.

NIH State of the Knowledge workshop

National Institutes of Health State of the Knowledge 7 - 8 April workshop live now. Line-up of speakers here. Note that there are no psychiatrists present - exactly as it should be for discussion of a neuroimmune illness. How it should be, how it should always have been. I often think that even if there were a unique biomarker/cure for ME tomorrow the damage wreaked by the intrusion of certain psychiatrists over last twenty years could never be undone.

Update* I dipped in and out, I listened rather than watched, it was fascinating and refreshing to hear scientific discussion about ME with no bullshit abracadabra PACE nonsense.

Day One available to watch/download.

Day Two available to watch/download.