The Christmas Issue of ME Essential Magazine! | 10 December 2019

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Caroline Cavey, Editor, ME Essential Magazine.

Members of the ME Association receive a quarterly magazine – ME Essential – delivered straight to their door. 

It features exclusive interviews, comment from MEA staff and trustees, medical and scientific developments and includes stories and opinions from people living with M.E.

“Welcome to this special Christmas issue of your ME Association magazine…

“There is so much hype attached to the modern-day Christmas. It’s completely out of control and a lot of it is inescapable. Much as we try not to get involved, we will inevitably get sucked into the process to some extent.

“But I do feel that we should also try to remember what’s important in life, and particularly at Christmas – quite simply, family, friends, and spending these precious few days with the people you love.

“I do hope you enjoy your magazine. We’ve included a leaflet that explains some more about what we do as a charity and we hope you might consider a donation at this special time of year.

“Please note that the ME Association will be closing down for Christmas from 20th December and returning on 2nd January 2020.

“From us all at the ME Association, we wish you a happy, safe and comfortable Christmas and New Year.”

The Christmas supplement comprises 20 pages of ME-related content and a special leaflet that explains more about what we do as a charity. We hope the magazine has something that will appeal to everyone. Extracts from this issue are shown below…

Help Us to Help You – Support Your Charity This Christmas

Chairman’s Message

“Nothing sells like health. A product that promises to make you fitter and prolong your life will fly off the shelf.

“Of course, our common sense says ‘rubbish’. But in the back of our minds there is that tingling of doubt; maybe it will work. Yet, it’s not easy sorting out the science from the hype, the reality from the propaganda…

“Unless those experts who pontificate about the illness keep an open mind, listen to patients, read the latest research, they fail us.

“I’m optimistic about the current NICE review of the Guidelines for the diagnosis and treatment of ME/CFS. It appears to be an open-minded one, listening to all.

“As an optimist at heart, I’m also cheered by researchers at the Boston School of Medicine who say that people with greater optimism are more likely to live longer.

“Now that’s one piece of expert advice that makes common sense to me.”

Neil Riley, Chairman, ME Association.

Genetics and Biomarkers

“This announcement sets out the current situation regarding a major and very ambitious bioresource initiative that involves the ME Biobank and the CFS/ME Research Collaborative (CMRC): The ME/CFS Biomedical Partnership.

“The ME Association plays a very active role in both the CMRC (where I represent the MEA on the CMRC Board).

“We are also committed to the ME Biobank (where the MEA helped fund the initial feasibility study and since then all the basic running costs amounting to c.£380,000 plus the additional £100,000 investment announced recently).

“I also chair the Biobank Steering Group…”

Dr Charles Shepherd, Hon. Medical Adviser, ME Association.

In Brief: Naltrexone

“Naltrexone is used, unofficially, in the treatment of chronic illnesses, including Multiple Sclerosis (MS), Rheumatoid Arthritis, Crohn’s disease, Fibromyalgia, Complex regional pain syndrome (CRPS) and Sjogren’s syndrome.

“The latest study indicates that Naltrexone is able to restore functioning in Natural Killer cells (a type of immune cell that many studies have found to be dysfunctional in ME/CFS) taken from ME/CFS patients…

Charlotte Stephens, Research Correspondent, ME Association.

Merry Christmas! From all of us at the ME Association!

“This year we wanted to let you all know we are thinking of you at Christmas and wish you a happy, safe and comfortable festive week.

“We are aware that not everyone celebrates Christmas and that there are other festivals and celebrations that you might acknowledge instead, so we hope that whatever you recognise as your special time that you’ll enjoy some wonderful moments.

“Christmas is exhausting at the best of times, so take it steady and plan ahead so that you have the best day possible. We thought we would share a few of our festive plans with you – and look a little silly in the process…”

Christmas Tips and Tricks

We recently shared a post around social media asking people for their tips and tricks for Christmas with ME/CFS. Here are a few of the highlights…

From our Facebook page:

“I’m giving up cards and donating to charity instead. No unrealistic expectations just some pressies for my daughter and a day relaxing”

“Create the tradition of new PJ’s on Christmas Eve or Christmas morning that are then worn for the day. Comfort rules!”

From our Twitter feed:

“We have decided to not bother with decorations or the food. Just presents and some tasty stuff. I love Christmas but it’s all too much.”

A Heartbreaking Story…

Christmas isn’t all good cheer. For some people with M.E. it can be a very difficult time indeed.

“Recently on LBC Radio, a caller talked to James O’Brien about how illness has left her and her family in poverty. Chloe told James how she unfortunately got ME a few years ago meaning she’s had to leave her job, as did her husband to become her fulltime carer.

“The story is so moving, as are the responses from other listeners. We thought it was worth sharing for so many reasons, especially at Christmas when expected pleasures can be hard to achieve and possibly unavailable…”

Saying NO at Christmas

Surviving the festive season with Ev Francis

“…I have decided to talk about the taboo side of Christmas. The side of Christmas where we need to say NO – and I don’t mean saying NO to the extra potato, or the replay of Last Christmas, but saying NO to things that you will endure for the sake of people pleasing, which will then result in discomfort for days, or maybe weeks after.

“I’m in a position where the art of pacing has become a big part of my life and it is the reason I am able work full-time.

“So, the question you have to ask yourself is, if you say YES to the trip to the shops, can you prepare your body before and have time to recover afterwards?

“If I know there is no time to nap before big events or relax beforehand, you can pretty much count on the fact that Ev will not turn up. So, like the roast on Christmas Day, have you got enough time to pace and prepare your body for it?”

MEA Fundraising Heroes

Our fundraisers are our heroes and we are always thrilled to publish the stories of those who have given up their time and energy to help people suffering with ME/CFS.

Christmas is a time to say ‘Thank You’, and this we do, not only to those featured on this page, but to all our fundraisers throughout the year.

40 Before 40

“Two years ago, Annie Warner set herself a target. She’d run 40 races before she reached the age of 40 and she would do them all for the ME Association…

Buying Research

“Five years ago, Barbara Shuttleworth set her sights on raising enough money to buy the services of a qualified ME researcher. This autumn she did just that.

“Her latest payment of £2,000 to our Ramsay Research Fund brought her grand total over these 60 months to £35,000 – quite enough to cover the basic costs of a bright young researcher…

Big Fish

“A 48-hour fishing match at a carp lake near Oxford, and a bike ride from Tom Webb’s home in Thatcham to the lake at Linear Fisheries, Stanton Harcourt, produced a whopping catch – for both the 20 or so anglers who took part and the two charities that benefitted.

“Carp weighing up to 40lb were taken from the lake and, after all the proceeds were in, there was £2,190 to be split between the ME Association and Scope, the cerebral palsy charity…”

For fundraising support please contact our new Fundraising Manager, Tony Britton, on 01406 370293 or email tony.britton@meassociation.org.uk

Christmas Gift Guide – Under The Tree

It’s not always easy to get out and the shops can be so busy at this time of year. It’s the perfect time of year for online shopping…

These mood boosting candles make the perfect de-stress gift and they also help light the way for those facing tougher daily struggles…

The wrap heating pad (24’’x 33’’) delivers penetrating heat to large body areas simultaneously to relieve fatigue and muscle stiffness or simply keep you warm in cold days…

The ZGGCD 3D Sleep Mask is based on ergonomics. The contours of the eyes area are deeper, and your eyes can move freely with no pressure on your eyes…

Pebble Art is perfect for anyone crafty. This hands-on kit will teach you how to create eye-catching pictures to decorate your home or gift to loved ones…

Spoonie Survival Kits is a social enterprise run entirely by those with chronic illnesses and 50% of sales is donated to a chronic illness charity…

Food Heaven with Healthy Living James

We are delighted to welcome back James Wythe, ME sufferer, nutritionist, qualified health coach and food blogger. James specialises in creating healthy and quick gluten, wheat, dairy, egg and refined sugar free recipes.

His aim is to inspire and motivate people to make better food choices and to improve their overall lifestyle. Here are a couple of his wonderful Christmas recipes.

  • Christmas Stuffed Squash
  • 3 Ingredient Chocolate Truffles
  • Epic Vegan Rocky Road
Member Feedback

“I am writing to say how much I enjoy ME Essential magazine. You have made such a change both in looks and content – so much content! You have also managed to make it feel more personal as well as amazingly informative.”

“M.E./CFS is such a lonely illness and the magazine helps us to feel we are not alone, that there are others going through the same journey as ourselves.”

Yvonne, Your Letters, Spring 2019.

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