September 2025
Hello and welcome to September’s newsletter. Hope you have had the best month possible.
Smiles
10 Smiles were sent to both ME sufferers and carers of all ages this month. All chosen and personalised to fit each person’s likes and interests. Some of the items sent this month included art supplies, craft sets, colouring books, notebooks, pens, pamper items, blanket, nature ornaments, cuddly toys, reed diffuser, keyring and chocolates. 
Special touch
In our Smiles we include a token item donated by someone affected by ME as a special touch from our community. Included in the Smiles sent this month was a hug card made by Giggy Crafts, with a handwritten note by Elaine. Thank you Libby and Elaine for your kind support. 
“I have just received the most thoughtful gifts from your charity after being nominated. I am currently overwhelmed as this is the kindest thing anyone has ever done for me. I’ve struggled for over twenty years with finally getting a diagnosis three years ago, I’m now 41 and the battle continues. My condition has declined over the past year leaving me in a very dark place mentally. Today I feel remembered and that my existence still matters. I have heartfelt tears of happiness as I type this message, I am extremely grateful. Thank you, thank you, thank you.”
“Thanks so much for the parcel – what a lovely surprise! The art materials are ideal – no paint, so not messy! And the book is a great idea too. I’ve attached a photo of the items and will send a proper thank you card in the post. Thanks again, and best wishes”
“Thank you, so, so much. The parcel arrived today, and you couldn’t have picked anything better. The Jellycat Westie was a particularly nice touch. It brought a smile to her face, in what is an otherwise relentlessly horrible time. Thank you again.”
“I just wanted to say thank you very much for my Smile. My mum nominated me and it was such a lovely surprise. It is such a wonderful initiative which can make a big difference – thank you for making people’s days a bit brighter.”
“Just wanted to say a huge thank you for the lovely gifts you sent for my daughter Emily, received today. They were perfect, just what she would have chosen for herself and made her day – big smiles all round! Thank you”
“I had the loveliest surprise today. Thank you SO much for nominating me to receive a very special box from Smile for ME – it certainly has made me smile, and I just couldn’t believe it! Everything in there couldn’t be more special or perfect and thoughtfully chosen and it is all such a treat… I was quite overwhelmed actually when opening it (and still am), I can’t believe what a lovely charity it is to do something like this.”
Share a story
Share a story is a segment in our monthly newsletters where we share a story from someone affected by ME to help raise awareness and remind others they are not alone. If you would like to be featured in an upcoming month please email us: contact@smileforme.org.uk
This month’s share a story is by Anna. Thank you Anna for sharing about your and your daughter’s experience.
My beautiful daughter Yasmin 30 years of age has suffered ME/CFS for almost 4 years now and as her mother it’s truly heartbreaking to see how much it has affected her quality of life over this period of time.
A girl who was once so energetic and full of adventure to sadly now housebound and virtually a prisoner in her home, most days unable to surface due to dizziness, nerve pain and extreme fatigue. Sensitivity to light and sound to the point of having to wear sunglasses and ear plugs daily. We do not know what brought it on, only that she suffered a few throat infections beforehand. We do not know if it was linked to having the Covid vaccination 8 weeks prior to her symptoms starting or that I myself suffered with the condition too when I was in my forties may have possibly been a contributing factor?
On a positive note though over time thankfully I did recover from it which fills me with the hope that one day Yasmin will too! However, even now after 15 years I do experience occasional crashes of extreme fatigue and brain fog and find the need to completely shut myself off for a day or two just to regain my energy levels.
One of the saddest and most frustrating things is that many people do not take this condition seriously including many GP’s and other health professionals and many of us are made to look like liars and time wasters, basically just shrugged off and forgotten about. Even friends and family often find it difficult to understand and some in our experience won’t even try to.
It is a very cruel sad and isolated condition and needs much more research and awareness.
In our experience there is very little help or support out there for people with ME/CFS. We have yet to find any support group in our area or surrounding areas. It is very sad.
We are both thankful for the smile for ME page and the gifts for carers and sufferers is such a beautiful and uplifting thing to do.
It was a lovely surprise to find Yasmin had nominated me and I absolutely loved the thoughtful gifts and all so beautiful wrapped too!
It really made my day coming home to a box full of the most thoughtful surprises. Both Yasmin and myself one day would love to do some fundraising events ourselves to raise awareness which we were hoping to do earlier this year but unfortunately unable to because of worsening symptoms and more care needed but hopefully one day soon we will and we will shout it out from the rooftops!
Just want to say that Yasmin is a true warrior! I am so proud of her for fighting this seemingly never ending battle and throughout it all has managed to keep her sense of humour!
You are amazing!
You are all amazing! And not alone!
Fundraising
Andy’s Great South Run
A big thank you and good luck to Andy who is kindly supporting us by running the Great South Run on 19th October.
You can donate to Andy’s Just Giving page here. Money is generously being matched up to £500.
Thank you Andy for supporting us again. It means a lot that you continue to choose to help us in support of your Mum.
Throwback photo from when Andy has supported us in the past
BED for Severe ME
BED for Severe ME is an awareness fundraiser by Sally, ME Foggy Dog, taking place next month on 29th October.
“We’re spotlighting the 1 in 4 people with M.E. who are severely affected, the ones for whom bed isn’t just for sleeping… it’s their whole world. Severe M.E. can mean constant pain, blackout episodes, paralysis, heart issues, and extreme exhaustion. Sound, light, even movement can be too much. The NHS has no clear plan for these patients, and that’s got to change. BED for Severe M.E. is all about raising the volume on their voices and driving urgent action.”
AI image created by Sally and used as her logo for her fundraiser.
Join in with BED:
Using the hashtag #BedForSevereME, we’re asking people with Severe ME, carers and allies to take photos showing their favourite pyjamas and post it on social media to help raise awareness on 29th October. Share stories, raise awareness, and spread kindness in our virtual community space.
Yep, we’re serious. Whether it’s work or school, don your comfiest PJs to spark conversation about life in bed. This is an opportunity for families and allies to get involved. On the 29th October get your employees to wear pyjamas to work and donate £2 a person to raise awareness and research for Severe ME. Campaign assets are available on ME Foggy Dog website.
Buy a BED badge and support people living with Severe ME. Help to make Severe ME visible. Start a conversation about Severe ME. Every penny of profit goes straight to Smile for M.E. and ME/CFS Biobank (Cure M.E.) 50/50 split.
Smile For ME and Cure ME will be the beneficiaries of BED’s fundraising efforts. Donate to Smile For ME: www.justgiving.com/page/bedsmileforme
We are honouring loved ones lost to M.E., their memory drives our push for change. The board is to remember the lives of those who have passed away with Severe M.E. through the eyes, memories, and recollections of their loved ones. Please add your ‘In loving memory’ post to the board.
Find out more: www.mefoggydog.org/bed-for-severe-me
Donation Boxes
A big thank you to Finishing Touches who kindly have a Smile For ME collection box in their shop. Thank you Dave, Sharon and all your customers for the generous £60 donation.
Smile For ME collection donation boxes are available on request. If you are interested please email your name and address to: contact@smileforme.org.uk 
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. 
Thank you’s
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 the Members of Officer’s Mess at RAF Digby for your amazing £207.38 donation. We are touched that you chose to support us and are really appreciative of your help in making a difference to us.