It is not just the lack of make-up that makes me feel particularly vulnerable and ‘naked’ about this film: I tell stories here that I have confided to very few others. The aim is to assist awareness of this much-misunderstood disease, and to campaign for a review of the Nice guidelines for M.E./CFS in the UK.
Tag Archives | myalgic encephalomyelitis
The Telegraph article gave the impression that Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) offer the best chance of recovery for M.E. patients. Actually, the study found something quite different – that those in the GET and CBT groups had no greater improvements, long-term, than those in the Pacing group (APT) and those who did nothing at all (Standard Medical Care). In other words, their new follow-up study showed that there is no advantage in Graded Exercise Therapy over other therapies.
crisis hits, you grab whatever lifeline you can in order to survive. Facebook and Twitter saved me from loneliness at the most difficult time of my life. But if you’re not careful, the rope that once saved you can become a noose around your neck.
When the grief of chronic illness strikes, I am Adam and Eve, homesick for Eden, looking at the angel barring the way back. My sickness is part of the metaphor that reminds me of the brokenness of the world. When I am paddling in the clear Mediterranean, I am John in Patmos, with a glimpse of heaven and the riches of eternal life with the Creator.
My son had his first movie premiere at the church with about ten of his classmates, who were kind enough to come on a Saturday morning and were fed popcorn and ice cream for their efforts. Alas, there will be no sequel, however – even before the boy said his emphatic ‘No’, you could have guessed from looking at the director’s bloodshot eyes that this would not be repeated. (Magic Man got bored of wearing the helmet about one day into filming.)
These past few years have shown a flurry of small breakthroughs in ME research, indicating inflammation in the brain, showing perhaps for the first time biochemically the ME patient’s abnormal physiological response to exercise, and a possible autoimmune origin. Finding the cause seems closer than ever – but because the government won’t fund it, we are reliant on people who know how devastating this illness can be in order to take research forward.
“I don’t know what God is doing. I don’t know why He heals me and then doesn’t heal me. I don’t know why He heals some and not others. I don’t know what governs His actions. That is what makes Him God.”
Eventually I sob out to a few friends on Voxer: Who am I? What am I doing with my life? – and it feels good to have released something. My friend Sarah replies, and says that in lots of cultures around the world, the women, particularly the mothers, are the archivists. They record the memories, take the photos, write the stories.