When The Red Tree and ME began with a single article last year, it was simply an attempt to help try to make ME visible in a way that felt human, creative, and honest. I could never have predicted how quickly this would grow into a creative community initiative, shaped by hundreds of contributions, conversations, and acts of generosity.
The messages of hope from ME and Long COVID scientists and clinicians to The Red Tree and ME this time last year would inspire the formation of the Red Leaf Creative Collaborative. Since then, we have launched the international art project ‘One Red Leaf at a Time’ which will culminate in a virtual exhibition in 2026. Every person who has added a leaf by sharing artwork or their experience has played a part in building something meaningful.
The Red Tree and ME installation at the Christmas Tree Festival at Chester Cathedral this year is helping to raise awareness of ME and the need for better understanding and recognition. The feedback has been really encouraging.
More recently, we have been able to turn awareness into action, by fundraising for the ME/CFS research led by Professor Chris Ponting at The University of Edinburgh. Earlier this month, I was interviewed by Barry Connolly, Communications Manager at The University of Edinburgh, who kindly wrote an article about the project. Huge thanks to all who have donated, bought red leaf greetings cards and red leaf Christmas crafts. Together, we have already raised almost £2,000 for this vital research.
It was an honour for The Red Tree and ME to be nominated for Day 20 of the #ThereForME advent calendar. In a landscape where people with ME are still fighting for recognition, services, and justice, #ThereForME have mobilised the community, challenged outdated narratives, and kept ME firmly on the agenda. Their work has amplified lived experience, exposed the gaps in support, and demanded better- not in ten years’ time but now. So here’s to #ThereForME - their impact this year has been unmistakable, and the movement is stronger because of them.
Huge thanks to:
The Red Leaf Creative Collaborative - for your support, encouragement, creativity, time and compassion
All the artists who have submitted red leaf art to the One Red Leaf at a Time art project - there is still plenty of time if you would still like to submit a piece
Clare Rayner - for organising the sale of gorgeous red leaf greetings cards using artwork from the Red Leaf Creative Collaborative
Amina Hussain - for kindly sponsoring and decorating the tree at Chester Cathedral along with Clare Rayner
Jo Baxter (AJcrafts4ME) - for creating and selling beautiful red leaf gonks and angels
Shirley Kay Mosaics, Jo Baxter, Helen Guy-Roberts, Caroline Fricker, Louise Kenward (Moving Mountains) and Germaine Hypher (Crafting a Path Through Illness) - for creating the red leaf decorations for Chester Cathedral at very short notice.
Helen Guy-Roberts - whose stunning red leaf window display in a local hair salon has been stopping passers by in their tracks, not just for its artistry, but for its purpose
Emma at Hair and Beauty Studio 57, Ainsdale - by dedicating this space to raising awareness of ME, Studio 57 has created an invitation to understand, reflect and to care
In a world where ME is still so often misunderstood and overlooked, creativity is a powerful advocacy tool. The Red Tree and ME installation at Chester Cathedral and Helen’s display in a hair salon are reminders that awareness can grow in the most unexpected places. Thank you, Helen. for sharing your lived experience, creativity, time and talent with us in this Substack post.
Wishing all those who celebrate a gentle Christmas and lots of red leaves in 2026.
Jo
Hope Remains
By Helen Guy-Roberts
I was ill with Long Covid and hadn’t left the house for months while shielding. My partner took me to The Lake District and we parked the campervan in a deserted space and went for a very short walk. He was then going on to climb Coniston Old Man. However, I could only manage a few hundred yards, which was a huge improvement from when I couldn’t even move from room to room.
This was long before Jo shared Shaun Tan’s Red Tree book with me. But a red tree took my eye, and I took a photo. I went back to the campervan to sleep and my partner went for his walk.
After I went home, I often looked at the photo. It comforted me to know the world was still out there, even when I couldn’t access it. Then, four years later, The Red Tree and ME was born.
Looking through my “memories” in the On This Day on my phone, my first Red Tree caught my eye once more. There is always Hope. Some days, there is only Hope. But Hope remains.
Following this, I embarked on my first project for The Red Tree and ME. Using the inspiration of Sean Tan’s book, I started looking at leaves. I had thought of crocheting, but fatigue got the better of me. So I invested in a Cricut Machine and started playing with the templates.
I cut several designs of red leaves, some of which were more complex than others.
The process is quite meditative: once the leaf is made you need to “weed”, taking out the unnecessary pieces and leaving that which is needed. It’s a slow process but amazing to see the picture you’re aiming for appear.
The pieces pulled together and were made into an awareness raising window display for a local hairdresser salon.
In Edinburgh this month, I saw the ultimate Red Tree - bringing light and Hope to all.
My hope is that others might be inspired in some way to do what they can to raise awareness in their spheres of influence to make the invisible a little more visible.
Helen
“Of the wild red leaves,
Love, with little hands,
Comes and touches you
With a thousand memories,
And asks you
Beautiful, unanswerable questions.”
- Carl Sandburg