Saturday, 27 April 2013

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?

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.


Anonymous said...

Hello. I'm very sorry to hear about your illness. My sister had ME for several years. She was in hospital for a time on a drip, barely able to open her eyes. She is much better now.

I don't know what made her better: maybe it was the psychological treatment she had, maybe it was the song I wrote for her (!), or maybe it was just time and luck.

What I don't understand is why you draw a distinction between physical and mental illness. Why do you think they are different things?

nmj said...

Hey, Am glad your sister is doing well now. Yes, time can play a big part in improving with this illness, especially if you rest sufficiently. The best prognosis seems to be for those who rest in early stages (I didn't). Difference between physical and mental? If I have a broken leg I want to see a bone doctor. If I have rheumatoid arthritis I want to see a rheumatologist. If I have ME I want to see a neurologist or immunologist. If I have a mental illness I want to see a psychiatrist. No point going to see the wrong specialist for your illness, it is harmful.