In this summer issue, we feature Ev Kendall, author of ‘My Open Letter…’, who shares her thoughts on life with ME. Dr Shepherd considers how to get the most out of a relationship with your GP, our news examines the recent Biobank study that found people with M.E. to be more functionally impaired than people with MS, we look at the reanalysis of the controversial PACE trial, and the tragic deaths of Merryn Crofts and Robert Courtney, who both sadly lost their battles with this cruel illness.
Our chairman, Neil Riley, kicks things off with some thoughts about the importance of charities and how society would be a much more difficult place for people with chronic illness without them.
Our news report continues with a look at the recent vision study from Leicester and the CMRC decision to make biomedical research its core focus.
Dr Shepherd provides some good advice on how to deal with your doctor and includes some pointers about making the most of appointments, what to expect from diagnosis, and practical help with illness and symptom management. He also considers the changing face of GP practice, private consultations and the growing use of online appointments.
His ever popular ‘Ask the doctor’ series continues with a focus on symptoms, and Dr Shepherd answers members questions about deteriorating symptoms, the effects of anaemia, and the likelihood of acquiring diabetes. He also explains metabolomics and why the ME Association is funding research in this area with Dr Karl Morten at Oxford university.
Monday 7th – Monday 14th May denotes ME Awareness Week and we’ve been updating our website with news of our Go BLUE for M.E. campaign and our focus this year on issues relating to education and employment.
In this issue of ME Essential we review what some of our supporters have been doing to raise awareness and what they have planned for this special week, and we give our members other ideas of things they might like to do themselves or ways in which they can support the events being staged by fellow sufferers.
Gary Burgess (pictured) has become a well known and respected advocate in recent months. Gary is a reporter for ITV news in Jersey, but has been unable to work since his diagnosis of M.E.
However, it hasn’t prevented him from using his expertise to raise awareness through his popular blog, and we’ve seen him interviewed by ITV and Radio 5 Live – where he was guest editor.
For this issue of ME Essential, Gary explains how he’s working to raise awareness and improve understanding, and the many ideas he has for the future.
Pippa Stacey – who wrote our leaflet ‘University & ME’ – returns to update us on what she’s been up to; working with Sheffield Theatre and with Scope, trying to improve accessibility for disabled people. And we showcase some of the amazing photos you have all shared with us as part of our ongoing ‘Real M.E.’ campaign. As part of ME Awareness Week, we hope to show many more of these images on our website – so stay tuned and in the meantime, please keep those photos coming!
In our last issue we invited members who wanted to meet new friends to get in touch, and in this issue, we share some of their stories. And we also share some of your tips and ideas for finding love and that special relationship despite having M.E.
Chantelle Parry and Sue Taylor provide some key insights into life with severe M.E. “I was an adrenaline junky who had done three skydives – now I can’t work, spend weeks in bed, and unable to do anything” Chantelle comments. We will be featuring Sue’s 50-year struggle with severe M.E. in our next issue, and we ask for similar stories from people who have had M.E. for a long time.
Our ‘Five minutes with…’ this issue features ME Association trustee, Martine Ainsworth-Wells. Martine (pictured) has brought a wealth of marketing experience to the charity and in this interview, she explains her background and why she felt drawn to help the MEA and the people we care about.
Rachel Bolger, a former adviser at Citizens Advice, talks benefits, and explains how you can best use the expertise provided by CA, and Ann Innes – and independent welfare rights adviser specialising in M.E. – talks about the DWP appeals process.
The ME Association has also recently published a guide to reconsiderations and appeals – available from our online shop.
And, finally, in our bumper Fundraising section, Emma Jenkins talks about her slow recovery from M.E. and how she is hoping to use her new-found restoration to raise more funds for the ME Association, and Hattie Hayfield asks, ‘Why do people profess to care, yet display the opposite when the chips are down?’ and suggests ways to deal with ignorant people.
Phew! 50 pages, packed full of interesting stories, news, research, campaigns, fundraising and medical information. There is nothing quite like ME Essential!
How to receive a copy of ME Essential
To receive a regular copy of our magazine you will need to be a member of the ME Association. To read more about the benefits of membership and to make an application, please visit our membership page.
You can join or renew membership online, or complete a Membership Application Form (especially if you would like to pay by annual standing order and receive £10 worth of free leaflets), and return it to our head office in the post.