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.)
Tag Archives | myalgic encephalomyelitis
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.
All the same, this is a time for celebration: ME is in the news in the UK, and it is due to a study which seems to indicate ‘robust evidence’ that ME is a physical not ‘functional’ illness. I dare not even say it, but it could well be that greatly-elusive biomarker the ME world has been waiting for. This could be a huge breakthrough for the future of research and treatment for ME.
She is my hero, because, like Job, she endures. We admire those who climb mountains and endure freezing temperatures, and history applauds them. But where are the records and awards for those who climb mountains of pain and isolation, day after day, for decades?
My interview for BBC Radio 4 on the topic of being ‘in the world, but not of the world’, presented by John McCarthy
I have been interviewed as part of a half-hour program presented by John McCarthy (yes, the John McCarthy who was a journalist in the Lebanon hostage crisis) on being ‘In the world, but not of the world’.