Progress...

This is great news from Griffiths University in Australia: the National Centre For Neuroimmunology and Emerging Diseases (NCNED) has been awarded $4 million dollars to research ME. In this short clip, Professor Staines says: Exercise should be contra-indicated in Chronic Fatigue Syndrome as it worsens the clinical condition of the patient and should be avoided.

This, of course,  has been corroborated by patient testimony (though largely ignored) for decades. As my fictional character Helen Fleet, who has burning muscles at the drop of  hat, says: 'she has too much lactic acid in her legs'.

There is very fine research afoot -  the report from  the IACFSME last month in Florida.

And this: five teams of scientists awarded funds by Ramsay Award Programme.

This too: a great blog on the ethical failures of the treatment of ME/CFS in BMJ from Dr Charlotte Blease and Dr Keith Geraghty (a researcher who himself has ME). I love the term 'a caste system of illness' - I often speak of the 'casual racism' towards ME patients as if you can say what you want - any minor jab or slight is 'allowed' - because you don't really mean it (and also have no idea what you are talking about).

And Berkeley journalist/academic David Tuller, who has done so much to expose the PACE circus, is now illuminating FITNET in all its flawed and awful glory (Prof Esther Crawley's FITNET was excessively and misleadingly - unsurprisingly - reported in UK media a few weeks ago as it it were a cure for cancer).

In my early fifties, ill now for thirty-three years, I find myself even more hurt and angry at what people with ME have had to endure because of wilful ignorance. I hope with all my heart that the next generation of ill, young people will not have to suffer the insults we did and have effective treatments too if not an actual cure. (It beggars belief that in 1984, when my own diagnosis was confirmed with abnormal muscle biopsy and EMG, we had the nuts and bolts, right there, to build upon, but research was wholly hijacked in UK and taken in completely the wrong direction by 'belief-led' psychiatrists, one in particular, at the end of the 1980s).

I seem to collect inflammatory responses. After a cough from hell in August/September, I now have costochondritis, which is inflammation of the rib cage. One of the drugs I have tried is Nefopam but it cloaks me with nausea and makes me totally out of it  (I got on the wrong bus a couple of weeks ago and have probably now bumped into every 'obstacle' in my flat). I had never heard of costochondritis but it's interesting that those with fibromyalgia seem to be prone.

And something beautiful and cheering, a cat on a radiator, an iPad painting by David Hockney.

12 May: ME Awareness Day; and people who think they are made of glass (updated 17 May)

Today, 12 May, is ME Awareness Day. I have nothing new to say, nothing that I haven't said a million times before. My friend Catherine has written a brilliant post for mumsnet blog about life with ME, I urge you to read this if you want to understand more.

I also want to thank the ME Association for all they do for us.

 *

Yesterday, I came across an article about people who think they are made of glass, it fascinated me, this exceedingly rare mental illness. I imagined 'glass delusion' sufferers - almost mythical, fairytale creatures - perhaps being prescribed CBT (cognitive behavioural therapy) and graded exercise (GET). I thought of them protesting: But we can't do graded exercise, our legs will break! I thought of them being told, your legs won't break, there's nothing wrong with you, it's in your head that you're made of glass. In the case of believing you are made of glass, this would indeed be true, that it's in your head. In the case of the neuroimmune illness ME, our legs do indeed break when we are *forced* to do exercise. Our muscles cannot cope and we might as well be made of glass, so fragile do we feel. But the PACE brigade continue to support the insupportable theory that ME is perpetuated by false illness beliefs. GET and CBT as a primary treatment for sufferers of ME is a grotesque fairytale, the PACE trial, an evil stepmother.

***Update 17 May: Have just listened to 'The Glass Delusion' programme on Radio 4, v interesting, though tainted somewhat by the appearance approx 20 mins in of  Prof Edward Shorter, a medical historian in Toronto, who has been in the past extremely hostile towards ME sufferers. He wrote this article in February in response to the USA's Institute of Medicine proposing new criteria for and naming - Systemic Exercise Intolerance Disease (SEID) - of  CFS. He seems to have edited the original article to make it slightly less unpalatable.  I see Shorter is actually mentioned in the original BBC article I posted above, but I didn't notice, is very far down, near end. This is what comes of not reading the whole article...seems anyway that my blog post was prescient. Also, good to see Dr Enlander challenge Shorter when his nasty article came out. 

Still, 'The Glass Delusion' is very worth listening to.  I liked the novelist's comment that Cinderella's slippers would be much less fascinating were they made of velvet.