Tuesday, 25 January 2011

A view from Spain...

At the weekend I had an email from Clara Valverde who had also just finished reading The State of Me. She observed how important it is to have the reality of the illness reflected in literature/art etc. Spain is a member of the European ME Alliance and Clara, a Canadian-Spanish former nursing professor, described their website (linked above) as somewhat hell-raising, a 'rebel M.E' site. Am sure if my Spanish was any good - all I remember is 'gato' for cat - I would love it! And for Spanish speakers, Clara has her own book here (rough translation, But You Look So Good! ME/CFS, a politically incorrect illness). She said she likes it most when I talk about books and I wish I could do that more often, but some ME issue inevitably whisks away my head, and you all know how slowly and haphazardly I read anyway. What I loved recently was a short essay by Geoff Dyer, 'Reader's Block', in which he describes his increasing inability to stay with a book unless it grabs him immediately. I laughed out loud when he said: 'Some books, obviously, are a waste of one's eyes'. And how, years ago, he laboured through The Idiot, hating it the whole time. Me too.

I've said before I'm staying cautious about XMRV and its possible link to M.E. Still, I have complete faith that the scientists at WPI will get to the bottom of it. XMRV will be guilty or not guilty. If not guilty, WPI will move down another intelligent biomedical road. (I'm interested in the exploration of XMRV coming from ticks. I was bitten by a tick when I was a child after visiting a safari park. Could XMRV have infected me and then hidden away until the Coxsackie virus reactivated it? After all, a lot of people in the west of Scotland were exposed to the Coxsackie B4 outbreak in 80s but didn't develop M.E.)

So, who knows, maybe we are finally on our way to a biomarker and cure for this illness that has fucked up so many of our lives. I can't emphasise enough to those who are not in the know: the tragic lack of biomarker has allowed M.E to be diagnosed in those who don't have it, and it has become dangerously symbiotic: pretend-M.E cases then feed into the 'trivialisation' of the illness, there is no longer only one illness under the microscope, proper research is impossible, look at the scandalous PACE trials, funded by our ever helpful MRC.


Nicky Reiss said...

Love the idea of "reader's block" which has been affecting me since having this illness. Now I often begin a book but give up half way through...
And yes, yes, yes... WPI and biomarkers... exactly.

Lesley said...

I love Geoff Dyer too, and totally get the reader's block thing. Life is just too short to waste it reading twaddle.

Anonymous said...

I totally agree with your assessment that ME/CFS has now been polluted with illnesses that are not ME/CFS.

I remember when I was diagnosed 20 years ago that everything had to be ruled out before ME/CFS could be ruled in. Now there are people being labled with this illness that have other illness, sometimes multiple illnesses. How confusing is that?

I agree as well that this causes great problems with the research pool because it is now contaminated, if you will. A sad essay on science/research.

I have placed my faith in the Whitemore Institute for one main reason - because it is a mother who has a daughter who has ME/CFS.

I can't think of anyone other than a mother that will fight with everything she has to find a cure, a causal link, or whatever it takes to help her daughter get well again.

That is who I want on my side! :-)

nmj said...

Nicky, Sometimes I can't even absorb simple instructions on a pizza that has to be baked in the oven for 10 mins. It is ridiculous! Though my physical symptoms vastly outweigh my cognitive ones, if I overdo it physically or mentally my head shuts down and I feel really rather quite dim.

Lesley, I loved the tone in Dyer's essay, the melancholic & agitated ennui he displayed towards reading, he *wants* to read but he just can't. I am new to him, only managed the first half of Jeff in Venice novel. I felt a little went a long way. But he is very appealing.

Dominique, I am attracted to WPI because it is purely biomedical research for a neuroimmune illness, no psychobabble or psychobaubles! Is great, of course, that they had the resources & inclination to set it up.