August 2024
Hello and welcome to August’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 balloons, flowers, a plant, teddy bears, squishmallow, notebook, pens, card making set, Decopatch craft set, embroidery kit, crochet set, bath bombs, bubble bath, bath flowers, face masks, book, candle, socks, fluffy socks, chocolate and sweets.
Special touch
In our Smiles we are including 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 handwritten card from Elaine who wanted to help brighten a day with a touching message. Thank you Elaine for your wonderful cards and kind support. 
“Thank you so much for my beautiful smile. I needed it. I love the hug thank you so much it’s perfect”
“Good afternoon my daughter smile has arrived she’s absolutely delighted! This has put a real smile on her face today ! Thank you so much for all you do helping people with ME it is very much appreciated. Thanks again”
“I was very lucky and received a smile from Smile for ME. Things are very tough and scary at the moment and it came with this card from an ME sufferer. I thought the words were beautiful and sometimes we all need that reminder so wanted to share. My parents nominated me for a smile for ME. They sent me a big bouquet of balloons.”
We are so touched by this wonderful thank you card we received from a recipient of a Smile, thank you.
Thank you to all the Smile recipients who have kindly sent messages or pictures after receiving your Smiles and given us permission to share them. Not only does it touch us to hear or see your Smiles have reached you safely and made you smile but we also love being able to share them to show people supporting where their money goes. There is never any pressure from us to share about your Smile, we completely understand the people who prefer to be private and we are just as grateful for the private messages as well as the lovely messages from the nominators. Please note if you do have a private social media account, even if we are tagged, we are unable to see your post due to your privacy settings. Please send it to us directly instead if you wish to share with us, thank you.
Severe ME Awareness Day
Fundraising
BED
To mark Severe ME Awareness Day Sally, with her social enterprises ME Foggy Dog and Stripy Lightbulb, launched the first annual BED For Severe ME campaign and fundraiser with multiple components.
Thank you Sally for kindly choosing us to be one of the charities you support and thank you to those who joined in and supported. An amazing £562.07 was raised and split 50/50 between Smile For ME and Cure ME. 
ME Foggy Dog states:
Why BED?
For someone with severe M.E., BED is their whole world because they often need to spend most, if not all, of their time lying down. M.E. causes Post-Exertional Malaise (or Post-Exertional Neuro-Exhaustion), pain, and sensitivity to light and sound amongst many other symptoms, making it very difficult to do everyday activities. BED is often their main place for rest, comfort, and even basic activities like eating, bathing, and ‘socialising’ online or with friends and family (if stimulation tolerated). BED can become a sanctuary. Essentially, BED becomes more than just a piece of furniture—it’s a vital part of their daily life and health management. 
ME Foggy Dog states:
25% of people living with Myalgic Encephalomyelitis are severely affected. Those living with Severe M.E are either bedbound and/or mostly or completely housebound. They have specific care needs due to the illness being exacerbated by factors such as movement, noise and light. Paralysis, black-outs, coma-like states, tremors, cardiac dysfunction, inability to chew or swallow, and stroke-like episodes are just a few ‘symptoms’ of Severe M.E. 
One component of BED For Severe ME is NHS Protocol for Severe ME campaign. ME Foggy Dog has been campaigning for an NHS Protocol for Severe ME since February 2024, as there are currently no protocols/policies for people with Severe ME within the NHS. Sally is asking you to please contact your ICB (Integrated Care Board), health board, or Trust and ask them to work with ME Foggy Dog and help make change happen. More information including contact details and letter template are available on ME Foggy Dog’s website: www.mefoggydog.org/bed-for-severe-me 
I joined in with the BED ‘Party’ on Social Media component by wearing my favourite pyjamas and explaining why they are my favourite to help raise awareness.
I mixed and matched with a white top from Stripe & Stare and pink bottoms from The White Company. They are my go to favourite pyjamas because they are extra soft and light which helps on days my whole body hurts and my skin is even too sensitive for certain fabrics. 
Sally gave away a £50 Cyberjammies voucher and loungewear/pjs set from Tesco as a prize for people who joined in with the BED ‘party’ on social media component. The #PjsWinME winners were Karen on Instagram and Tess on Facebook. 
Thinking of those who have sadly lost their lives to Severe ME. ME Foggy Dog created an ‘In Loving Memory’ board to show the human impact of Severe ME. Take a look or add to the board to remember the lives of those who have passed away with Severe M.E. through the eyes, memories, and recollections of their loved ones.
On the 8th August ME Foggy Dog launched two contests for creative people with ME to get involved with for BED For Severe ME 2025.
1. The ‘BED for Severe M.E.’ Song Contest
2. The ‘BED for Severe M.E’ Song Contest Logo Competition
More info: https://docs.google.com/document/d/1puopWQPJFPisytZ6W-rkKE1WOeZhHQR9ex_z5LqQjc0/edit
Share a story
Smile For ME raises awareness of ME by sharing personal stories with our segment share a story. As this month marked Severe ME Day we want to reshare the stories relating to Severe ME.
Sophia Mirza: smileforme.org.uk/shareastorysophiamirza
Written by her mother Críona Wilson and shared on Sophia & M.E’s website: sophiaandme.org.uk. She shares Sophia’s story of ME and medical abuse which subsequently lead to her death at the age of 32.
Merryn Crofts: smileforme.org.uk/shareastorymerryn
Clare writes about her daughter Merryn, sharing what she was like and what she sadly endured during the horror of Profoundly Severe ME before passing away in 2017 just days after her 21st Birthday.
Laura: smileforme.org.uk/shareastorylaura
Laura has written two pieces for us. Most recently she shared her experience of what it’s been like living her 20’s with Severe ME ahead of her 30th Birthday next month. Previously she shared her experience of Severe ME and the realities of how each and every day is a matter of survival and how much the little things can make a difference.
Angela: smileforme.org.uk/shareastoryangela
Angela shares her daughter’s experience with Severe ME from a Mother’s point of view to raise awareness for Severe ME Awareness Day.
Olivia Meads: smileforme.org.uk/shareastoryoliviameads
Olivia raises awareness of ME, a neurological classified disease, and how at age 15 her life changed irrevocably. Sharing a snapshot of her symptoms and her wishes.
Debbie: smileforme.org.uk/shareastorydebbie
Debbie shares a poem she wrote about Severe ME after receiving a Smile in Merryn’s name.
Katie: smileforme.org.uk/shareastorykatie
Katie writes about ME having so many sides including severity and fluctuations and one of the rare positives being community.
Veronica: smileforme.org.uk/shareastoryveronica
Veronica shares her experience of ME, lessons she’s learnt with orthostatic intolerance and the implications of GET and CBT.
Paul Mc Daid: smileforme.org.uk/shareastorypaul
Paul writes honestly about his experience of ME specifically his very severe noise sensitivity sharing his reality with humour.
Lizzy Horn: smileforme.org.uk/shareastorylizzy
Lizzy shares her experience of ME and hope. Hope being a strange and glorious thing, it can do much good but it can be painful too.
Kara Jane Spencer: smileforme.org.uk/shareastorykara
Kara shares her experience of severe ME and how from that place of suffering and despair her album was born.
Sending love to those affected by Severe ME and remembering those who have sadly lost their lives. RIP Sophia Mirza, Merryn Crofts and Kara Jane Spencer.
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
To everyone who has supported us this month thank you. It is thanks to your kindness we are able to continue sending Smiles to people affected by ME so we can’t thank you enough for your generosity,