Hello and welcome to Septembers’s newsletter. Hope you have had the best month possible.
12 Smiles were sent to both ME sufferers and carers of all ages this month. The items included in our Smiles change all the time as we personalise them to each person’s likes and interests. Some of the items included this month were water bottles, blankets, gift voucher for a meal out, sunflower bird feeder, mug, earl grey tea, notebooks, pens, craft sets, bubble bath, hand cream, hair bands and clips, gloves, nail varnish, baking supplies, chocolate and sweets.
The DecodeME study is now open. You can take part by signing up: www.decodeme.org.uk/portal
Decode ME say…
“We secured funding for the largest ever ME/CFS study to see whether the disease is partly genetic and, if so, help pinpoint what causes it. The study should help us understand the disease and ultimately find treatments
We need tens of thousands of people to take part by taking our questionnaire and providing a saliva sample so we can study their DNA. You can do both from home.
We need 25,000 DNA samples and even more people to take our questionnaire.
We expanded the study to now also include up to 5,000 DNA samples from people who developed ME/CFS after a Covid-19 infection.
We invite anyone who is aged 16 or over, lives in the UK and has had an ME/CFS diagnosis from a healthcare professional to take part.”
For more information check out their website: decodeme.org.uk
This month’s share a story is by Holly Moscrop. Thank you Holly for sharing what you want to say when somebody asks you what’s ME?
It’s been over 10 years since I first developed M.E. You’d think by now I’d have an explanation about it ready to roll off my tongue as soon as anyone asks a question, but most of those 10 years have been spent in my bedroom, so my people skills are a tad rusty.
I’ve been incredibly lucky that over the years, thanks to the privilege of being able to pace and rest, having a brilliant support network in my parents, access to good medical care and energy-saving aids and adaptations, and a hefty dose of luck, I’ve seen tiny, gradual improvement that’s built up to move me out of the Severe category and tentatively into Moderate. For which I’m forever grateful. But being able to leave my bedroom and sometimes be out in the outside world has inevitably meant meeting new people, and as any other wheelchair users know, that usually comes with questions.
“What’s M.E.?” people often ask, and for a minute, I’m lost for words. How do I really tell them what M.E. is in a succinct, snappy way?
What I want to tell them is it’s the disease that plucked a 16-year-old me from her final year of school and locked her in her bedroom, taking away her chance to sit the GCSEs she’d worked so hard for or wear the prom dress hanging in her wardrobe.
It’s an illness that took away those teenage rites of passage like learning to drive, buying my first drink, sitting A levels and going to university, having my first date or relationship, going to a club or festival, living away from home, getting a job… all those life events that didn’t get the chance to be ticked.
I want to tell them that alongside the standard list of symptoms is a sea of grief for all that could have been. That each time I watch a friend go off to uni or get a job… a house… a partner… a family… it drags me underwater for a while.
I want to say it’s a condition that keeps you on the side-lines of everyone’s lives. Where you watch from a distance as their lives move at what seems like a million miles an hour, while yours takes all the winding lanes and backroads.
That it affects every aspect of your life from the hobbies you once had to the ability to wash yourself whenever you want to. That everything you do comes with sacrificing something else, often costing you a lot more than it was worth.
I want to say that the muscle weakness from lack of energy at a cellular level stretches so much further than weak arms and legs. It covers every muscle in your body from your eye muscles, to your ability to swallow, to the muscles that work your bladder.
I want to tell them how light burns holes in my brain, sucking out what energy I have and leaving me filled with nausea. How my cheeks, chest and hands set themselves on fire after a day of what my body decides was too much exertion, and there’s not a single moment without pain.
I want them to know the bone-crushing fatigue and post-exertional malaise means I’ve missed saying final goodbyes to far too many loved ones. People who were there for me for most of my life who I couldn’t be there for at the end of theirs. It’s meant I hardly know any family members who were born in the last 10 years, and that my best friends have homes I’ve never visited and partners I’ve never met.
I want to say it’s a disease that stole my dreams and meant I had to reshape them into new ones.
I need them to realise there’s millions of others who could also say all of this and more. Many who wouldn’t be able to because they are too ill to leave their beds or even speak, and some who have even lost their lives entirely.
I don’t want their pity or sympathy; I want them to know I have a full and happy life within the limits I’ve been handed. That it’s an illness that teaches you to find endless joy in all the little things most people miss and build your happiness from things it can’t take away. But I also want them to understand the true, devastating depth of it.
But mostly, I stumble over my words about it being a chronic condition with lots of debilitating symptoms… Then they leave, or move the conversation on, and I think about all those other things I wish I could’ve explained to them. Maybe in another 10 years I’ll have a better answer for them, or maybe I won’t need it because all of us working to raise awareness, like everyone here at Smile for M.E., will have already made the stranger on the street aware of the true impact of M.E.
By Holly Moscrop
Smile of the month
What’s made you smile this month? Each month we ask this question on social media and we love hearing the responses. We hope by sharing some of your smiles it can help others to find a smile too.
A big thank you to Pauline who has kindly chosen to fundraise for us by raffling this beautiful blue butterfly scarf crocheted by Brooke.
If you would like a chance to win the scarf you can buy a ticket via the information below from Pauline:
“I am raising funds for Smile For ME
Brooke @crochet.with.bea has crocheted this beautiful butterfly scarf – approx size 89” x 11” made from acrylic yarn.
The pattern is from Emma @Alaskacrochet
If you would like a chance to win, tickets are £1 each payable to my PayPal – feel free to get as many tickets as you would like.
Please use friends and family option so all funds go to the charity.
The winner will be drawn on October 22nd – any funds received after this date will be refunded back.
OPEN TO A UK POSTAGE ADDRESS ONLY”
Great South Run
A big thank you you and good luck to Andy who is running the Great South Run for us. If you would like to support: Andy’s Great South Run fundraising page
We have been lucky enough to receive corporate fundraising in the past from the kindness of supporters through their work. Affinity Water have generously donated, Samsung have matched funds raised and Schroders Personal Wealth sponsored a whole month’s worth of Smiles. Do you or someone you know want to help support us? Get in touch email@example.com
Find out more: www.smileforme.org.uk/corporatefundraising
A big thank you to everyone who has supported us this month. We are so grateful for the kindness and generosity which enables us to continue sending Smiles to those affected by ME. It means such a lot thank you.
A special thank you to Naomi for generously donating items for us to include in our Smiles.
11th October is our 10th Birthday. Join in on our social media from Sunday 2nd October as we count down the 10 days with a game. We hope to share a smile and get the community involved to show others they are not alone.