Millions Missing protest - Edinburgh 12 May, 2018

I got to the #millionmissing protest for the last twenty minutes, just in time to hear Carol Monaghan MP's speech. I was happy to be able to shake her hand and give her a wee brief hug afterwards. I told her she will never know the enormity of what she is doing by challenging PACE and campaigning for biomedical research. The sun was shining and it was glorious to see activism in action by a community of patients who have been wronged by the medical establishment for far too long. Heartbreakingly, the inquest of 21-year-old Merryn Crofts, who died a year ago, was held yesterday and the coroner's verdict was death caused by ME. A mental health expert stated that Merry had no psychological illness. 

I hope the core of psychiatrists with Wessely at the helm are thoroughly ashamed of themselves. Wessely, of course, has said on different occasions that he doesn't care how unpopular it makes him but the more severely ill you are with ME, the more likely there is to be a psychological element.The Wessely gang are so thick-skinned and arrogant, I doubt very much they will be touched by this verdict, they will no doubt blather on about how ME and CFS are not the same thing, and that they have always been studying CFS - though they happily conflated ME with fatigue for decades - always careful to say in the small print that ME and CFS may not be same illness. This was always their get-out clause.

Shame on all of them, for all time.

Photo from @lighthousebks of Saturday 12 May:

Blue shoes with zips and advocacy for ME

With all the focus on #millionsmissing just now I have been thinking about the shoes I was wearing in September 1982 when I went off to do my (ill-fated) year abroad in France, not yet nineteen. They were blue and pointy with a diagonal zip - I got them in Schuh and later fictionalised them in a scene in The State of Me where Helen is on a ferry returning home from France because she feels so hideously ill. In real life, I came home from France twice - I  actually went back, because my GP couldn't find anything wrong and thought I was homesick (months later, a locum GP discovered I had Coxsackie virus - he'd also had it - he recognised my chest pain, the feeling of having a heart attack - and luckily recovered). I still recall, going up the gangplank, if that is what it is called, on my way back to Normandy, so determined to beat whatever the hell was making me feel so ill - a wee fucking soldier, really - little did I know I was only storing up more hell, not allowing myself to rest. 

I have looked for photos online of blue shoes from Schuh from 1982 but I can't find anything. They were hideous (I also remember watching Boy George singing 'Do you really want to hurt me?' on television in our host family's living room).

I'm not officially involved in #millionsmissing Edinburgh, but I know it will be brilliant. Carol Monaghan MP has taken up the cause of slaying the toxic dragon that is PACE and also Stuart Murdoch from Belle and Sebastian will speak. I may bus/taxi to the Mound event on Saturday - a hop and a skip from me - Edinburgh is very walkable, if you are healthy and able -  I will see how I feel on the day. I was so shattered emotionally and physically after the Scottish Parliament event in January, and I have been advocating for ME sufferers for decades, in one way or another - I really need to step back now and focus on other things (novellas-in-progress, for example).

I was delighted to see that the fabulous Lighthouse Books has a display of books with blue covers in aid of ME Awareness Week - and The State of Me is there (photo nabbed from Lighthouse tweet). It is a little ironic that my France shoes were blue as blue is also the cover of ME Awareness.

I am also delighted that there is a feisty new generation of activists, they do us all proud, many of them advocating from bed with hellishly diminished lives. I do think the climate is changing, finally, though I don't honestly expect a cure for ME in my lifetime. I just hope newly diagnosed twenty-year-olds will not go through another thirty years of life-changing illness as I have done. I always say it takes a  decade to adjust to ME, and I hope soon others will not have to make such an adjustment, as the illness will be eminently treatable if not curable.