March 2026
Hello and welcome to March’s newsletter. Hope you have had the best month possible.
Nominate – Special Event
2026 Carers Week nominations are now open. We are celebrating carers of ME sufferers during Carers Week 8th-14th June by sending them a special BearHugs Smile.
ME doesn’t just affect those suffering, it affects those around them who often have to take on the role of being a carer. We hope that by sending a special Smile we can remind them how much they are appreciated.
Nominate by completing the nomination form found on our website: www.smileforme.org.uk/carersweek
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 blankets, eye masks, Jellycat cuddly toys, Lego sets, wooden puzzles, tea, mugs, coasters, plant growing kit, botanical jar ornament, puzzle books, art book, socks, dried fruit, sweets 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 beaded snowflake handmade by Laura. Thank you Laura for your kind support. 
“I just wanted to write and say a huge thank you. As you can see by his smile Ollie was so happy to receive his gifts this afternoon. He was so surprised and it really cheered him up. Thank you again for your generosity and kindness it really means the world.”
“Hello Smilers, Just wanted to say a massive thank you, I have just received my smile & I am over the moon. It was wrapped so beautifully too. The thought you have taken selecting gifts that I would love is amazing. As as person with M.E smiles are few & far between & your thought & beautiful gift definitely me smile today. Thank you again”
“A massive thank you to Smile For ME for their fantastic package that they sent for R, after I nominated him for a ‘smile’. Being my young carer, he does so much to help me and he really deserves such a wonderful surprise. They sent the most thoughtful things that he absolutely loves! ME absolutely sucks, but kindness like this brings so much happiness to us both!”
“Thank you so much for Shania’s smile box. The teddy was a huge smile effect. She loves all the items in the box, she was grateful. She says her new teddy will be her hospital support bear, when her assistant dog, Jamie is unable to come with her.”
“Thank you so much for my parcel. I’ve been going through PEM since last week and this really made my day!”
“Hello 🙂 I received my wonderful box yesterday, and it brought a big smile to my face! Thank you for all you do, Amy x”
Share a story
This month’s share a story is by Git, from ME Centraal . Thank you Git for writing about your experience with ME with a piece titled ‘Loneliness to the bone’
Loneliness to the bone
I’ve been in bed for two months now. At first, with earplugs and headphones. Stimuli were off limits. Sound hurt. Everything hurt.
Now things are a little better. Sound still hurts, but I no longer have to be shut off from the world all day. And so I listen. To a world I can’t see, but can hear.
Every Monday and Thursday morning, I hear the same children’s voices. Early. Cheerful. Probably on their way to preschool. I can’t see them, but I know exactly what they look like. Backpacks. Little coats. Sleepy eyes.
I used to be a childcare worker. I loved starting at seven o’clock. Children coming in and joining me at the breakfast table. We started the day quietly. Some still half asleep, lazy and sluggish. When I think back on it, my eyes burn. And yes, a tear rolls down my cheek.
I now recognise my neighbours by their sounds. The front doors. The cars. The rhythm of their lives. My neighbour also works in childcare. She leaves early every morning. It’s almost Christmas. She must be counting down the days until she has a few days off.
I’m jealous. Not of the days off. Of the life.
I want to go back to work. To the Christmas spirit with the children. Decorating the group. Making Christmas lunch together. The happy faces when they see you again. I loved my job. Damn it, I was good at it too. Loved by children, parents, and colleagues. I dare to say that out loud.
Because I never went reluctantly. Because I could express my creativity. Because I loved the most beautiful thing there is: making children marvel every day.
For years, I looked out the window and saw my neighbour leave for work and come home again. Sometimes with things I always took with me too. For a new theme. Or because I had already prepared a craft at home.
Grief. Pure grief.
And then there are people who think you’re “having a nice time at home.” That you’re lying on the couch all day for fun. That you’re stuck in a body that doesn’t cooperate for fun. That you’re no longer the mother you want to be for fun. No longer the wife. No longer the friend. No longer the sister. No longer the daughter.
For years, there have been people who didn’t see my illness as an illness. I just needed a kick in the butt. I ignored countless comments. Looks that lingered just a little too long. Words spoken behind my back.
It hurt. It hurt so much that I started sharing less and less with the outside world. Because no one believes you if you don’t look sick. Eventually, I distanced myself from people who were once so dear to me.
And now, with all the attention on post-COVID and other long COVID conditions, those same people suddenly think: oh… maybe she is sick after all.
But that doesn’t change the pain they caused me all those years. Nothing about the sadness their words left in me.
Loneliness to the bone. Surrounded by people.
And while the world goes on, I have been mourning for years. Every day. In silence. In loneliness.
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
To everyone who has supported us this month thank you. It is thanks to your kindness and generosity we are able to continue sending Smiles to those affected by ME so we can’t thank you enough.
A special thank you to ME Global Chronicle and Rob. They publish an international newsletter with ME news from all over the world and have kindly been including Smile For ME in their updates. You can view the ME Global Chronicle newsletters here. Smile For ME is unfortunately a UK only charity however we are really grateful for the support from different countries and the kindness we’ve been shown.