Saturday, 14 May 2011

Tweets & Kindles & Tulips

Am almost afraid to blog after the last few days of chaos, previous comments still not restored, but I just want to link to an excellent post by Johan Mares. And this is positive news too. I felt like I'd been on a demo on Thursday night after tweeting for #may12th (reading tweets is energy consuming too, a cockpit of information), and I was pleased that Marco Biagi (newly elected MSP) and AL Kennedy (one of my favourite writers) RT'd one of my tweets, but of course the health editors ignored me, they ignored all of us. Someone remarked that Richard Horton (The Lancet editor) has his head in sand, I would like to suggest that his - and all the PACE supporters' - is somewhere considerably less pleasant. This is a timely article on the editing of health journals: 'Are journal editors like used car salesmen?'

The Kindle version of my book was briefly at #92 in literary fiction, I guess it spiked as a result of tweeting. I am told that Kindle is now 80% of market (of ebooks), though when I see one on the bus - kind of infrequent up here - I still think it has something of Star Trek about it.

I went into the garden on Thursday evening - post-demo - even though it was very windy, I needed air. My arms felt like rags, and my head had that horrible heated up, inflamed feeling. The tulips were streamlined by the gusts and made me think of a dog's ears being blown from a car window. They made me smile.


Anonymous said...

Thank you for linking to my blog. I usually write critical articles, but for May 12th I wanted something positive. I am glad you liked it and feel honored to be mentioned here.

nmj said...

Hey Johan, As I said in my comment over at yours I really like when you suggest this as a weapon to fight the detractors:

We have a better skill set. ME/CFS doesn’t discriminate. We number teachers, nurses, engineers, housewives, technicians, chemists, biologists, accountants, pharmacists, medical doctors, secretaries, translators, psychiatrists, psychologists, journalists, yoga/teachers, scientists, linguists, computer experts, physiotherapists, managers, programmers, sales representatives, lawyers, politicians, writers, painters, photographers, musicians and even comedians.’

The problem is they have constructed such a bizarre & misleading narrative about our illness, we have essentially been stripped of who we are. I guess this happens to any patient population to an extent, we become the illness - at least in the eyes of medics, they do not know our pre-illness selves, after all. But this crowd seem to have little idea that we are as bright and talented as they are - or think they are. And I liked the way you articulated this. Since they ignore all biomedical evidence, we have to outsmart them!

Firestormm said...


I don't know if you have seen this graphic presentation of some of the key aspects of the PACE trial?

Graham McPhee has done a fantastic job of showing how these results might better be seen.

Assuming of course his data are valid and the graphics reflect the said data, that is...

Once upon a time, twas I who could do things like that [sigh]...

No need to post as a comment - just thought you might like to take a peek x

nmj said...

Thanks, F, am ME'd out for now but will look later.

Also, want to link to this: