The clamjamfry of the PACE trial

It's quite a clamjamfry in the world of ME research at the moment. The dodgiest-of-dodgy-trials aka as the Oxford PACE trial is having the life shaken out of it in the form of American health journalist and academic David Tuller. Tuller has recently and comprehensively demolished the trial over on Prof Vincent Racaniello's virology blog. And James C Coyne, professor of health psychology - and visiting professor at Stirling University - is weighing in too. The Americans have come to save us.

I often speak of the ME narrative being taken over by the CFS narrative in the nineties, and by chance I came across an ITN clip from 1996 - lovely Trevor McDonald informing us that ME was no longer known as ME, but now officially called CFS, and Simon Wessely (not yet knighted) telling us that longterm cases of disability had a psychological component. All interspersed with an exhausted woman telling us how very tired she was - no disrespect, but she apparently had (slow onset) chronic fatigue, not the actual neuroimmune illness ME. And glimpses of a shady-looking medical panel making this name change decision. So now we have actual visual proof of when the trajectory began: Ramsay-ME being buried by the psychiatry-led UK medical establishment. I'm so glad I didn't see this in 1996, the television screen would have been cursed to hell. (And given that the feisty consultant neurologist who diagnosed me in 1983/4 had also studied psychiatry at Harvard, you'd think he *might* just have picked up on any psychological component...)

But it has all come back to bite them on the bottom, as PACE is, of course, rubbish in so many ways. Conflating a complex, poorly understood neuroimmune illness with chronic fatigue was never going to work, was it? Apart from the methodological flaws/holes, what enrages me is that the scaffolding of PACE is that ME - even if virally triggered - is perpetuated by unhelpful illness beliefs - and that changing how you think about your illness (CBT) and a wee graded jog (GET)  round the park will make you all better. No matter that many people with ME are reporting becoming *more* disabled after graded exercise therapy. Once mild or moderately ill, now bedridden. No matter that you can't fucking exercise because your head shuts down and your muscles burn and you become exhausted and weak as  soon as you remotely overdo it. There is mitochondrial dysfunction, that's why. But PACE makes no allowances for post-exertional malaise (PEM).

Anyway, in response to Tuller, Simon last week wrote a defence of PACE - full of rather dull nautical imagery - which was quickly satirised by Graham McPhee, a former maths teacher who had to retire ten years ago due to ME. In the meantime, while PACE implodes, there is great research afoot. At last month's research collaborative meeting in Newcastle, virologist Professor Montoya of Stanford apologised to the ME community and said it was his wish that all USA doctors would apologise to ME patients for the way they been treated (and what a pleasure it was to meet him briefly and shake his hand). The Norwegian government has already apologised, a shame that the UK neither has the impulse nor grace to do the same. Here is the summary of ongoing and new research presented in Newcastle written up on ME Association's site by Dr Charles Shepherd. And the USA's NIH has just pledged a massive injection to research.

My 14 year old nephew sent me the first draft of his short story assignment for school, I love reading both nephews' writing. I'm bemused by the arc of good versus evil - the Americans are all powerful and good, fighting evil terrorists who want to nuke the planet. Of course, in real life, there is much more grey, but as far as PACE is concerned I'm very glad we have the Americans on board. One can sense they are flabbergasted at how the UK media has been bolstering the psychiatric lobby, presenting only one - very flawed - model of ME for the last twenty years.  And on the subject of nephews, my younger nephew, who's ten, almost eleven, dressed up as an assassin at Halloween. *

* update Welcome article by doctor/journalist James Le Fanu in Telegraph on the nonsense of PACE - rare to have intelligent articles on ME by UK journalist.

Autumn: research & lumberjacks & novel reprinted

Watching the 2003 film Monsieur Ibrahim et les Fleurs du Coran the other night, I was reminded of my time in France at L'Université de Caen, in the scene where the son feeds his father cat food and passes it off as pâté. My flatmate and I used to buy jars of pâté, from Carrefour that looked and tasted like cat food. I still remember the red and white chequered lids. I came across my carte de séjour the other day, which gave me a pang, more than just the nostalgia of finding student items from the '80s, it was when my life changed forever. In this student ID photo, I'd already picked up the Coxsackie B4 virus (while still at home in Scotland) and was having bizarre, frightening symptoms, with no clue, of course, of what lay ahead. In the photo, I'm wearing a purple and red and white lumberjack shirt - my then boyfriend's. Lumberjack shirts were fashionable then. 

The lumberjack theme is resonant:

In interesting new research from Professor Montoya's team at Stanford, they've found specific brain anomalies in ME patients:

The analysis yielded three noteworthy results, the researchers said. First, an MRI showed that overall white-matter content of CFS patients’ brains, compared with that of healthy subjects’ brains, was reduced. The term “white matter” largely denotes the long, cablelike nerve tracts carrying signals among broadly dispersed concentrations of “gray matter.” The latter areas specialize in processing information, and the former in conveying the information from one part of the brain to another. That finding wasn’t entirely unexpected, Zeineh said. CFS is thought to involve chronic inflammation, quite possibly as a protracted immunological response to an as-yet unspecified viral infection. Inflammation, meanwhile, is known to take a particular toll on white matter.

In the reporting of these findings, one news outlet accompanied its article with a photo of a tired looking lumberjack. It's hard to overstate how fucking irresponsible this is, though we are used to articles about ME with stock photos of fatigued women decoratively slumped over laptops, or sitting on beautiful white sofas looking a wee bit peaky. And as for the illness being 'real', well, the wise/informed among us have known that for decades. But when you get idiots in the medical community renaming a serious neuroimmune illness as 'chronic fatigue syndrome' - as happened in the late eighties/nineties - and reframing the illness to suit their own agenda - you probably can't expect the media to be anything other than sloppy.

*

I used to count the years after I got ill in 1982, I stopped some time in the late nineties. But, still, when autumn comes, I know deep down that another year has passed. The State of Me has, happily, just been reprinted. The cat food scene is in there, of course.