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Members of the ME Association receive a quarterly magazine – ME Essential – delivered straight to their door. It features exclusive interviews, keeps them up-to-date with medical and scientific developments and includes stories about how people cope with the disease.


ME Essential Mid-Summer Edition 2018

In this latest edition of ME Essential magazine, our general focus is on the hugely successful ME Awareness Week that took place in May. This fabulous week of events raised double the amount we had estimated and saw M.E. being discussed across the country and around the world.

In addition, our chairman Neil Riley takes a pop at the less than impressive science media centre who were asked to leave the CMRC recently as it refocused its efforts on biomedical science.

Neil asks how a charity – yes, the SMC is a charity – can possibly claim to report accurate science while pursuing the psychosocial model without question.

We carry the letter from Workwell Foundation – that now accompanies all copies we send of the 2018 edition of the ME Association clinical and research guide – expressing mutual concern about the continuing promotion of graded exercise therapy and the deconditioning model of causation.

Dr Shepherd launches his latest medical leaflet ‘Treating ME/CFS’ which examines drugs, vitamins, supplements and management approaches. It includes an extensive A-Z review of treatments and he explains how new drugs come to the market.

The recent blog reflecting on the sad death of Merryn Crofts by Dr Shepherd is repeated in this edition of the magazine, and we look at the very important Westminster Hall debate led by Carol Monaghan, MP.

“My M.E.” features the story of Michele Kurth who experienced a serious onset of M.E. thirty years ago, but after a tortuous series of twists and turns, recently climbed to the summit of Mount Snowdon. Although she is still affected by M.E. she is much improved thanks in part to a strict management plan. “I appreciate that I am one of the lucky ones and I know that not everyone will see the level of improvement that I have, but please don’t give up hope,” Michelle writes.

Emily Bailey in “Mad about Mobility” talks about how use of a walking stick and wheelchair have not only brought a new lease of life and made things more accessible, but also a sense of humiliation and shame. It’s not been easy adapting to the limitations of M.E., but Emily explains how she has come to terms with using mobility aids – and apologises to them for trying to hide them away.

In the “Secret Diary”, one of our readers debates depression and suicide, concluding, “I haven’t given up the will to live. Life is still bubbling away inside like a can of Cola that had been shaken up, just waiting for someone to pull the ring tab!

“When doctors ask if I am depressed I say, “No, I am frustrated!” There is a huge difference and it is so important to get this point across. We need to talk and be honest about how we really feel.

“We are not a burden, we have a burden and when the burden is too much for us to carry alone, we must seek help from anyone we trust.”

In “Real Lives”, Joy Devlin considers the benefits of having someone with M.E. as an employee.

“Would you be surprised to know that many people with ME have a mild form of the condition and are able to work? I am one of them, and would like to dispel some myths about working with M.E.”

Not only does Joy explain why a person with M.E. might make a good employee, she also lists some of the main things an employer should know about the disease to help make working life more comfortable for both parties.

We also hear from Sophie Cooklyn, Ffion, Silent Voices, Pamela Binny, Ev Francis, The Shropshire M.E. Group, The Norwich M.E. Group, we share “Five Minutes with” our Fundraising Manager, Helen Hyland, Hattie Hayfield, and review the events we were able to capture from ME Awareness Week 2018.

There’s 52 pages in this packed edition, and far more content than I can hope to cover in this summary!

Don’t forget:

  • The new 2018 edition of our clinical and research guide. We can send a free copy to any nominated health professional – just contact head office with their details.
    Included with the guide is a covering letter from Dr Shepherd pointing out the problems with certain management approaches and a copy of the Workwell Foundation letter criticising the use of graded exercise therapy.

 

  • 2018 Xmas Cards! Last year our lovely festive cards sold out very fast, so we thought you’d like the chance to order this year’s cards early to get ahead of the rush! They come in two designs and in packs of 10 cards for just £3.50 per pack.
    Choose from Joy or Dove, or even order some of each! The wording inside the cards reads: ‘Seasons Greetings and Best Wishes for the New Year’ and each card features the MEA logo and address.

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.


ME Essential Frequently Asked Questions Index

In every issue of ME Essential magazine, Dr Shepherd answers questions from members on a whole variety of subjects relating to life with M.E. that together provide a useful source of reference.

You can view or download our latest index and then find answers from your own back-copies of our magazine, or contact head office who should be able to assist.


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