Monday, May 12, 2014

About ME : work in progress

As today is International ME/CFS Awareness Day, it seemed the right day to share where I'm up to with my artist's book "About ME".

Below is the text I am using in the book.

"Patients with ME/CFS experience abnormal fatigue that is both more intense and qualitatively different from normal tiredness. The fatigue in ME/CFS may take several different forms: post-exertional fatigue (abnormal exhaustion or muscle weakness following minor physical activity), persistent flu-like feelings, brain fog (mental exhaustion from everyday cognitive effort) and wired fatigue (feeling over-stimulated when very tired).
The type of fatigue that is a core feature of ME/CFS is post-exertional malaise (PEM). PEM is the exacerbation of fatigue and other symptoms (e.g. cognitive difficulties, sore throat, insomnia) following minimal physical or mental activity that can persist for hours, days or even weeks. PEM may be related to abnormal energy metabolism." *
*Quoted with permission from the IACFS/ME Primer for Clinical Practitioners (2014)

When I read this excerpt from the International Association for CFS/ME's "A Primer for Clinical Practitioners", it struck me as the clearest, brief description of ME that I have ever read. A sort of Goldilocks explanation. Not too much, not too little, just right. I use the text as a tonal element to create a self portrait, but despite being partially obscured, the text I select is an important aspect of the work.

In earlier posts you've seen some of the stencils I've been preparing. Last week I finished a first trial using the stencils to position the text on the translucent pages of the book.

Here's a photo of the trial, just snapped with my iPhone so please excuse the quality. 

Bear in mind this is a work in progress, a way to test whether the technique would do what I hoped. The text is written on eight pages and the book will be a simple pamphlet binding. There's tweeking and refining to be done, a little more detail in certain important areas, but it is a pleasing start.

When the book is finished, I hope it will contribute in a small way to raising awareness of ME. This is the first artwork I've made in over a decade that deals directly with my illness.


  1. I see a layering or transparency; someone I knew with ME said she felt "see-through and flimsy" on some days.

    1. It's funny you should say that Di. When my father was alive he used to ask me if I was "feeling a bit spooky". Sometimes it is like that, and other times you feel like Sisyphus, but pushing that rock through treacle.

  2. I had no idea you were doing this, I can't wait to see the finished book!
    Hope you are agap these days.

  3. Wonderful portrait, Amanda! Excellent description of ME; I can't begin to imagine what it is like but feel this gives me a bit of insight.

  4. Good luck with the project. The drawing so far looks very interesting. I like the mix of clinical description with self-portrait.

    Fatigue. How can one possibly convey it to someone who's never lived with it? Sisyphus pushing a rock through treacle… that comes close to capturing the essence…

  5. one day, i will try for a book. nice to follow along with you.

  6. Interesting, brave project! Such a relief to see clear clinical definition that doesn't veer towards psychiatric diagnosis. See fatigue as lying under thick and heavy grey felt-blanket, from which I occasionally emerge (head/hands), without ever being able to shake it off.