The two faces of ME: the one you don’t see
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.
The two faces of ME – the one you do see
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.
Your description of how you are feeling at present is concise, graphic and hard hitting. I pray that this awful illness receives the mainstream medical research and funding that it so badly needs.
The prejudice and lack of understanding of the illness reminds me of the way depression was perceived when I was a teenage sufferer in the nineteen sixties and early nineteen seventies.
A much more enlightened attitude to that illness prevails today, and I hope that the same will be the case for M.E. (Sooner rather than later).
God bless,
John.
Yes! Depression has seen such a positive change in attitude, particularly from medical quarters since the 60s and 70s. Sometimes I wonder what comes first, the treatment, or the attitude. For example, I suspect that doctors’ opinions change when they realise they can prescribe drugs that will improve things. If they don’t have the drugs, they’re not so positive. So do we need more research to find a treatment before doctors will start viewing ME as a neurological illness? Or do we need to change opinion so that more researchers get interested in researching ME? It’s such a chicken and egg situation.
Tanya, we all have two faces, but most aren’t brave enough to show them. Thank you for trusting us and helping feed our own brave just a little bit. And I will say it again. I HATE diseases. I want you to be healthy. I was just popping over here to get the link to your suffering series. Thank you for leading us in what it means to suffer. xox
Thank you so much for hating disease with me, and for always being a cheerleader for me. I love you lots.
Thank you for showing us both faces, brave Tanya. Your message is powerful.
Thank you, lovely Amy.
Oh, that video made me cry.
me too, friend. Me too.
Dear Tanya, thank you for sharing on such a bad day for you, M.E-wise. I fully sympathise and empathise with your struggles. It takes courage to allow others to see how we actually are most days because we so often feel we need to hide the truth of our condition behind a smile. This is a day to let slip the seriousness of having and trying to live with such a debilitating illness. Thank you for keeping it real. Please don’t waste energy replying. Rest and recover some necessary strength. Blessings, love and prayers. Xox <3
Thank you for always understanding, sweet Joy.
It is devastating that government and health funding bodies take such an out of date and hurtful stand on the treatment of ME. The consultant appointed in our area offers this damaging graded exercise treatment and CBT (which is helpful in coping, but NOT a cure, as it is a physical illness, not a psychological one). What will it take to move them on?
I share your frustration. I can but hope that at some point the tipping point will come.