50 Stories for Pakistan

Very happy my short story 'The Bangle Man' will be among the soon-to-be published 50 Stories for Pakistan, a fundraising anthology for victims of the floods. The collection will be published by Greg McQueen's Big Bad Media and all proceeds will go the Red Cross Pakistan Funds Appeal. Is so long since I've written anything new and this is flash fiction - just 500 words - a perfect length from energy p.o.v but you can still say a lot. I'm delighted to be part of such a great project. I could barely watch the most recent Channel 4 report on this catastrophe. One baby - a wee scrap, almost nothing more than his huge brown eyes - suffering from severe malnutrition and the worst strain of malaria. I had to look away.

Lovely

This from Muriel Spark's The Prime of Miss Jean Brodie, which I recently read for the first time.

'. . . It was then that Miss Brodie looked beautiful and fragile, just as dark heavy Edinburgh itself could suddenly be changed into a floating city when the light was a special pearly white and fell upon one of the gracefully fashioned streets. . . .'

A deluded Baroness

I'm over my Pope moment and back to being an 'aggressive secularist'. Still overdosing on Lemsip and menthol pastilles. Still angry - and insulted - at Sayeeda Warsi talking crap on Newsnight, saying that people of faith are more likely to donate to charity and do voluntary work. (I undoubtedly succumbed to a massive relapse of ME as a result of doing voluntary work in London in late 80s, and have volunteered periodically during stages of my illness.) I can make dodgy, spurious claims too, Baroness, and I would like to suggest that people of faith are more likely to be racist, sexist and homophobic. Looking forward to Stephen Hawking on Channel 4 though I am so muffled with cold, it is hard to absorb much.

The Pope just went past my flat

The most surreal event. I am addled with a stinking cold, and just woke up to helicopters, I knew they must be for the Pope, but I had no idea his route was coming up here. I opened my living room curtains to see the streets lined with police, and the Pope went right past a few mins later. It feels dislocating, like a hallucination. He just looked like a wee man with a tartan blanket round him. I softened towards him for a few minutes. This really was pure street theatre. Bizarre.

The dark blue bit

I asked my five-year-old nephew what page of Chloe the Chameleon he was on, he said he'd check. He came back to the phone and said he was at the dark blue bit.

Dundee Uni virus study on ME/CFS

This young boy was labelled a 'school refuser' for two years until ME was eventually diagnosed. He says 'sometimes you just want to punch someone'. Very true. Lack of belief from this core of wretched medics makes you more Malcolm X than Martin Luther King. I still want to kickbox when I think of the wretches who tried to hijack the Scottish Good Practice Statement Guide. You should all be ashamed of yourselves for the way you have systematically impeded research into this fucking illness. The creative scientists and doctors who are trying to get to the bottom of ME, deserve medals, they really do. (Oh, and I'm sure if I just really really really really really really try and become in control of my symptoms rather than them being in control of me à la Chalder I will be able to join a gym and kickbox.)

A more in-depth broadcast here from BBC World Service.

Scottish Good Practice Statement for ME-CFS

Last night I saw via ME Association that the long-awaited Scottish Good Practice Statement on ME-CFS were available online. I quickly scanned the guidelines, they look better than the NICE nonsense, but I still have to read them in detail. I was thinking, thank God I live in Scotland. Then I did a little googling and was chilled to discover how the process had almost been hijacked by so-called ME 'experts' neuropsychiatrist Dr Alan Carson and GP Dr Clare Gerada (who just happens to be married to Simon Wessely). This no doubt explains why her hugely ignorant comments read like propaganda. Neither Carson nor Gerada have published anything on ME before. Serious concerns about the final draft document not being fit for purpose were submitted to Nicola Sturgeon by patient/carers group in July. I'd like to know why the hell consultant neurologist Dr Abhijit Chaudhuri was not consulted about the guidelines? He is one of the few UK experts in ME, he took over from Professor Behan, who diagnosed me in 1984. But no, we have Dr Carson, who - silly billy! - admitted at one stage to confusing 'chronic fatigue' with 'chronic fatigue syndrome'. Chronic fatigue is categorised by WHO under ICD-48 as 'a mental and behavioural disorder', whereas 'chronic fatigue syndrome' (or ME, its real name) is categorised under ICD-G93.3 as 'a neurological disorder'. Just a wee bit different. I'm almost scared to read the guidelines now and I didn't sleep well, thinking of these scary, blinkered medics yet again putting their oars in. You have to wonder how ignorance comes so easily (and wilfully) to supposedly intelligent health professionals. If anyone reads the guidelines before me and finds good things, please let me know. Maybe we'll be pleasantly surprised.

ME Association's initial response to SGPS: 

 ...However, the very things which had originally been seen as necessary to avoid, had now became entrenched in this review – the dilution of recognition of ME compared to CFS, and the process-driven evaluation of ‘evidence’ with the inevitable devaluation of long-developed clinical understanding compared to often poor-quality CFS research findings...

*update, August 2017: Unfortunately the links to Cathcart ME Support Group regarding inputs of Doctors Carson and Gerada are now broken. For some more background, Dr Carson trained under Michael Sharpe and appears to still think PACE is a good trial. Dr Gerada thinks it is *nihilistic* to describe ME as neurological as patients will then think they have a neurological illness and won't get better. I paraphrase, but you get the gist.

Baggage

Susan Douglas, the producer of WHAT ABOUT ME? announced a few months ago that her ME/CFS documentary was taking a different direction. I have been - naturally - curious as the film was going to originally be a partial dramatisation of my novel. Blogging recently about the film, American journalist Mindy Kitei writes that 'the spine of the film' is XMRV. As I have said before I am not putting all my eggs in the XMRV basket - I am afraid to - but it is hard not to feel optimistic when you look at the Whittemore Peterson Institute website. The possibilities are dazzling. Allow yourself to imagine not only a cure for ME, but a time when you can talk about the illness without all the baggage. That is so much part of the ME experience, the baggage, the defenses we have all had to construct. Latest film developments here.