I was fully intending to write something big and inspiring for ME Awareness Day this year – but, ironically enough, my health is stopping me. Today I am very aware of ME – it’s in my brain, as I feel the window of concentration rapidly closing, my brain swelling and my mind as slow as porridge; it’s in my back and shoulders, a long slow burn of acid pain; it’s in my ears, flinching and cringing at the shrill bird song which sounds painfully loud today.
This is the illness that many people in the world think means ‘feeling a bit tired’. This is the illness that many (the majority?) of doctors in the UK want to say is a behavioural disorder, to be treated with Graded Exercise Therapy so I can overcome my ‘exercise phobia’. The Medical Research Council continues to pour money into psychosocial research (more Graded Exercise, more Cognitive Behavioural Therapy), and it is left to charities to do the hard work of slow fundraising so that the secrets of ME might be uncovered.
However, there has been some good news recently. 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 know that people are strapped for cash at the moment, and already giving generously to many causes, but if you are at all able to give even a little to research for ME, that would completely make my day.
Here is a video from Tom Whittingham – brother of my friend Naomi, who has severe ME and has written some excellent articles in the Telegraph before about how devastating the illness is. He’s running the Edinburgh marathon to raise money for research into ME. Do watch Tom’s moving 5 minute video and, if you can, give to the excellent work of ME Research UK, one of the best research charities out there. Click to donate through Just Giving.
Thank you for your support – I am grateful for you all. That link again – click to donate through Just Giving.