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.

We could send letters

The title of this post is from one of my favourite Aztec Camera songs and it reminds me very much of when I first got ill, when ME punched into my life, and everything was so frightening and terrible. And on the subject of letters, I am at this moment bowled over by the wonderful Countess of Mar, a longtime advocate for people with my illness (she has been ill herself from organophosphate poisoning), who has just written a dazzling open letter to Simon Wessely. 

After the article in the Independent recently, in which the Countess of Mar and others suggested Simon did not deserve the Maddox medal, there was an  utterly predictable and nonsensical response from Esther Crawley and her friends, mainly psychiatrists and psychologists. Responses to her letter are at bottom of the Indy letters page, you need to scroll down.

I'd decided not to blog any of this because I'm so very bored and exhausted by the Wessely school - as I've said elsewhere Simon gets himself more coverage than the American presidential elections. 

But the letter  from the Countess of Mar  just had to be blogged.

And Professor Hooper has also responded to Esther and co.

And the Canadian National ME/FM Network has written an open letter in response to Simon's recent attack on the Canadian Guidelines (which Scotland favours).

Maybe, maybe, maybe, just maybe these 'bio-psycho-socialites' will now leave us the hell alone.

Just maybe.

*Simon's response to the Countess of Mar, and her reply to his reply. 

** The entire Mar-Wessely thread is now here.

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!

Funking up illness with an umlaut

So BACME (British Association of CFS/ME) have finally launched their website and are looking for feedback.

I'm immediately alarmed by their 'cool brand, ME with street cred' approach: I think it somewhat trivialises a neurological illness to add an umlaut, make it funky. Do these people think they are selling Scandinavian furniture or yoghurt? And correct me if I am wrong but does the umlaut over 'm' even exist?

Of course, when you look at the names behind BACME - Esther Crawley and Alison Wearden - you realise you just can't take this site seriously - and I hope others don't. They seem desperately to be trying to appear to believe that ME is neurological but everything about their language and tone - not to mention support of PACE and the Lightning Process - tells us otherwise.

The blinkered ones keep their blinkers on

Just saw that the blinkered ones - also known as the National Institute of Clinical Excellence - are at it again. I really don't have energy to get enraged, just wonder how long the fun & games will go on. The Scottish Guideline at least acknowledges the recently discovered XMRV and the blatant damage of graded exercise reported by patients - and by comparison may almost merit the Nobel Prize for Medicine. I'm truly curious to know how many people have cured themselves of ME - and I mean the illness I know as ME , not pretend ME - by following NICE's orders since August 2007. Coincidentally, I came across NICE earlier this evening in another context, on the London Review of Books blog - before I 'd seen the ME Association post above. I left a comment over at LRB. I must've known in my bones NICE was up to something.

And I have just seen this over at the beautifully named blogging not jogging. We are treated to the stupidity of two women named Esther - Esther Rantzen and Dr Esther Crawley, both devoted fans of the Lightning Process. As I said on my comment over there - they sound more like they are presenting Blue Peter, they totally lack gravitas, especially Dr Crawley. And I mean no offence to Blue Peter, just that these women seem more about sticky back plastic than neuro-immune illness.