Everyone’s talking about Clare McCarthy’s article, ‘I have M.E. and it sucks!’, in the latest issue of our membership magazine ME Essential – out today.
The Plymouth-based cultural entrepreneur, who went down with M.E. five years ago after one of her sciatic nerves was shredded in a car accident, wrote an open letter to all her friends explaining her illness.
“The thing is, it is really, REALLY hard work to live with. Not just for me (and the c250,000 other sufferers in the UK, and many more MILLIONS worldwide) but for you too, The people in my world. In my life. Because you have to learn how to live with it too”, she wrote.
It went almost viral after it was posted on our Facebook – with over 30,000 people reading the searingly candid text within a couple of days, and plenty more putting it on their pages.
And her piece continues to attract rave reviews: “It shows exactly how not only herself but loads of us feel. I couldn’t have put it better myself”, one person told us just a couple of hours ago.
Elsewhere in today’s ME Essential, we get down to the nitty gritty of helping people to cope with the illness and bring them up to date with the latest research developments and other news.
We preview the Research Collaborative conference in Newcastle in October. There are still places available for non-researchers. But, in order to rub shoulders with key figures in the research community, you first you must become an Associate Member. Check out the programme here http://tinyurl.com/qja9fc6 and obtain an Associate Member form at: http://tinyurl.com/ol83nnr
In the first of his great set pieces, our medical adviser Dr Charles Shepherd devotes four pages to a Management File about The Menopause, Female Hormones and Hormone Replacement Therapy.
He also gives a six-page round-up of the awesome Invest in ME annual conference, which continues to attract dozen of researchers from round the world, who are keen to learn more and share their ideas.
In his regular ‘Ask the Doctor’ column, Dr Shepherd answers five burning questions – to keep or not to keep those mercury fillings, how to make the best first of it at a PIP tribunal, checking out whether the symptoms could something else instead, cursory GP consultations (why don’t they physically examine us any more) and whatever became of of the newly coined American label, Systemic Exertion Intolerance Disease?
The magazine catches up with the latest Rituximab news; there’s been a promising phase 2 clinical trial in Norway. And it explains why our Ramsay Research Fund has just pumped £21,000 into a new mitochondrial study – this one evaluating ‘The ATP Profiling Test’ developed by Dr Myhill, Professor Booth and John McLaren-Howard.
We welcome Sue Luscombe, our diet and nutrition adviser, as a new columnist. Her first column is about weight loss and weight gain, and setting realistic goals if you are intent on finding a new shape while on the way back to health. We have already received Sue’s next column – for November – about improving IBS through the diet.
There’s a feisty review by Dr Ellen Goudsmit of a book that enraged many in the M.E. community this year because of the attention it received in the national press – ‘It’s All in Your Head’ by consultant neurologist Dr Suzanne O’Sullivan, who devoted a whole chapter to explaining why she thinks M.E. is a psychosomatic illness.
There’s also five pages of readers’ letters and our latest fundraising news from Helen Hyland, including a tribute this time to the chaps who have been showing true grit for the love of the women in their lives.
And, talking of women in our lives, our cover photo shows three generations of the Moran and Horne families – with Jim Moran cuddling his two-and-half-year-old grandson Jax, who took part in the Great Scottish Toddle in Edinburgh, to raise money us. Jax – entered by his mum Natalie Horne ((pictured) – raised thousands of pounds because his granny Maureen has been an ME sufferer for years.