Coming soon… Isaac’s third Blue Sunday - The Online Concert for ME is happening this month. This year, he has chosen to raise funds for the research at the University of Edinburgh, led by Professor Chris Ponting. Writing for ‘Enlightened’, the University of Edinburgh Alumni magazine, Isaac says…

‘I was inspired by my older sister, who has very severe ME and is bedridden. She is funny, caring, clever, determined, hopeful and incredibly brave. Seeing what she lives with has made me determined to do what I can to raise awareness and support research into treatments and a cure. I was also motivated by Anna Redshaw, founder of Blue Sunday - The Tea Party for ME, whose work encouraged me to organise an event that could contribute to both awareness raising and fundraising.

The 2026 concert will feature a wide range of musicians and performers who have generously volunteered their time. I will also be performing in the concert again this year. The concert will include closed captions and avoid flashing lights to make it as accessible as possible.’

As times are especially difficult for so many, Isaac has decided to make the concert free to access with the opportunity to donate to ME research at the University of Edinburgh, for those who are able. Artists this year include Millie Ady, Mark Austin, Rachel Chiu, Tasia Daye, Wayne Dineley, Audrey Dupuis, Flora Fiora, Isaac Greer, Emma Harner, Lex Harvey, Erin Hephzibah, Amina Hussain, Lisanne Jacobs, Susan Lambert Smith, Richard Neuberg, Rachel Nicholas, Edward Rhodes, Mike Smith, Paul Thornton and Pete Whitfield. (I’ve had a sneak preview and the performances are all fabulous!)

“To be able to hold onto hope is a privilege, one that not everyone can afford. For some, the weight of systemic injustice, poverty, or despair extinguishes the flame of hope before it can even flicker. It is a privilege to be able to imagine a brighter future, to believe in change, and to have the resources or support to pursue it. For those of us who can hope, let it not simply be a comfort to ourselves, but a driving force for action and solidarity.”

Over the last year, The Red Tree and ME has received powerful submissions of red leaf artwork and lived experience narratives from people living with ME and Long Covid, as well as from carers and allies inspired by this creative initiative. The submissions span many genres. Some pieces come from people creating art for the very first time, while others are by professional artists. Each contributor interprets the red leaf in their own way.

We will continue accepting submissions for the exhibition until the end of May 2026. After that, our focus will be on creating and curating the online exhibition itself.

There is still time if you would like to submit a red leaf artwork, please use the Google form and send in your piece before 31 May 2026.

I hope the pieces below will encourage and inspire you. With grateful thanks to the artists.

Finding

Pam Du Val, UK - photo collaged gelatine print and cyanotype

Pam writes ‘I was inspired by the words of the scientists working to understand ME they moved me very much. I am alone so much, making art from my bed: but they reminded me that we are not on our own. They reminded me of what hope looks like.’

IV Required

Paula Knight, UK - digital watercolour

Paula writes: ‘The veins of this ivy leaf in senescence reminded me of how people with ME can easily become dehydrated, especially when feeding problems are present. IV saline can often make people with ME feel better, because it helps to increase blood volume. Unfortunately, we don’t have access to it on the NHS. IV is a homophone with ivy, of course, making for a suitable metaphor.’

Warm October

Beren, UK - photograph

Beren writes: ‘I have had Long Covid since 2020 and I’m sometimes able to sit/lie in my garden at lunchtime, though POTS symptoms make it a challenge! This autumn, October was very warm and the grass began to grow again after going dormant in September. I noticed some yellow leaves from the acer tree in the grass and arranged them around a single red leaf that blew down from the nearby olive.’

Wrapped in Hope

Alison Clayton-Smith, UK - homemade ‘yarn’ and metal

Alison writes: ‘When I saw the project was inviting contributions I just had this idea to create a leaf using some sort of frame and wrapping with red material. I had already been thinking about how I might use the metal for a creative project and found that with a bit of effort I could manipulate it into shape by hand, keeping it simple to do. As I wrapped the yarn, which had also been waiting for a use, around the frame, I realised the feel and look was like that of wrapping a bandage. I thought about how bandages are an aid to healing, and though they won’t heal ME, that it felt like I was wrapping up hope for a cure into my ‘leaf’. I chose to take the photographs outside on my patio, which has been left to go wild this year, as I have been too unwell to garden. I have been learning to appreciate the beauty in allowing life to flow as it is rather than get stuck in the losses.’

Winter red leaf of hope

Cathy Trinder, UK - photograph

Cathy writes: ‘On a dark December day the hopeful red brightness of this leaf lit up my soul on a rare walk, and begged to be recorded, so i placed it on the dark background of the path and photographed it with my phone, and here it is: completely unaltered and perfect just as it is.’

Radiance

Ann Wingate, USA - photograph

Ann writes: ‘Nature near and far always inspires. Fall season brings fresh colors, joy and hope.’

Autumnal Dragon

Jamie Magid, USA - polymer clay on a glass jar

Jamie writes: ‘I wanted to add an interactive element to my figurines, and was inspired by the idea of a dragon’s hoard to create treasure jars with tiny clay guardians on top.’

Glowing In The Gloom

Ralph Turner, UK – photograph

Ralph writes: ‘These leaves came to rest on the ground just like this, no intervention on my part. I really like the arrangement.’

Becca shared this piece while she was a final-year textile design student at Duncan of Jordanstone College of Art and Design in Dundee. She writes:

Can You See ME Now?

Becca Cecil, UK - Textiles

For my honours project, I wanted to create something meaningful - something that reflects a personal story, but also speaks to a wider issue that often goes unnoticed. ‘Can You See ME Now?’ is a tribute to my mum, Caroline, who has lived with Myalgic Encephalomyelitis for more than a decade.

This installation is a personal and emotional response to the lived experience of my mum, who has suffered with ME since 2009, following a virus. Her journey revealed to me the critical lack of research, education, funding, and public awareness surrounding this condition. Seeing her resilience in the face of such an invisible and isolating illness inspired me to create a body of work that gives voice to those who often go unheard. With this project, I aim to spark conversations and increase awareness, invoking a much-needed change.

Using textile design as both medium and message, this work merges data-driven design with expressive, tactile storytelling. The installation is informed directly by voices from the ME community, gathered through interviews where participants were asked two key questions: What colours do you associate with ME? and What words would you use to describe it? Their answers - blue, black, grey; heavy, restricting, isolated, forgotten - shaped the visual language of the piece.

These knits subtly embed data and statistics within their structure through variations in scale, colour, and form. Some samples resemble graphs; others evoke a broader atmosphere. To physically and psychologically convey the weight of the illness, I incorporated chains, curtain weights, and the scale of the showpiece enabled a weightiness by the sheer amount of fabric. Modular components, fastened with nuts and bolts, reflect fragmentation and restriction, mirroring the way ME disrupts lives. Colour was considered to create a gradient dragging visual effect, while pops of vibrant colour represent hope and those brief moments of normalcy.

Red features as an acknowledgement to the MEAction Network and their #millionsmissing campaign, which fights to bring visibility and justice to people with ME. Shades of blue and purple - drawn from interviews and representative of the ME Association - also appear throughout.

Displayed on a body form, the installation is communicated in an accessible way, bringing the human condition to the forefront. It served as a powerful reminder that behind this invisible illness is a real person. The fabric drapes heavily over the body, covering the neck and face, making you feel suffocated, invisible, and stuck, like you have no voice. Many people with ME are home- or bed-bound, unable to advocate for themselves - this installation speaks for them.

This project is a call for recognition, understanding, and reform. Through craft and storytelling, Can You See ME Now? transforms awareness into action - and action into hope.

I hope this brings a sense of hope and reassurance that change is happening. It may be slow - sometimes painfully so - but progress is underway. Even if it feels like there’s little you can do, know that there are people out there actively working, pushing, and believing in a better future for the ME community. And that future is coming. One red leaf at a time.

Helen is a valued member of the Red Leaf Creative Collaborative. She previously shared her piece The Kintsugi Leaf of Hope. Here she writes from a more personal perspective:

Threads Of Hope

Helen Stout, UK - Cross stitch

Motivated by Roosevelt’s words, I dug out my needle, threads, a cross stitch pattern, and, with the capacity to spend a few minutes a day concentrating, I began to do what I could with what I had. Several weeks later, I was beyond thrilled with what I’d achieved, a beautiful red leaf, just by doing a few stitches at a time!

In the first pages of Shaun Tan’s book, The Red Tree, a red leaf is shown framed on a girl’s bedroom wall, a recurring symbol of hope for her to turn to during dark and despairing days. These pages inspired me to stitch this red leaf for my bedroom wall, and to call it ‘Threads of Hope’.

Years ago, I would have responded to Roosevelt’s words by getting out my bike or walking boots and doing a sponsored event. But along with so many others whose lives have been ravaged by ME, those days are a distant memory. I’ve been housebound for 6 years, the boots and bike are long gone, and my body now compels me to rest for most of the day. This enforced rest gives me the strength and ability to sit for a while to eat, to enjoy the garden, have the occasional visitor, or do a bit of cross stitch.

‘Threads of Hope’ is for the 25% of ME sufferers who’ve been severely and very severely affected by ME. We’ve been rendered housebound or bedbound and often feel forgotten and invisible to the world. Lying alone in the dark for most or all of our lives, day after day, year after year, it’s understandable that we can’t help wondering whether anyone sees us or anything is happening to help us, for the search for treatments and a cure for ME has been painfully slow.

I frequently turn to the encouraging words of hope and solidarity from clinicians and scientists on The Red Tree And ME Substack pages whenever I need reminding that something IS happening, and it IS gathering momentum, as various threads of research are gradually coming together to form a bigger picture.

I’m concluding with one of those quotes, from Tina Katsaros, La Trobe University, Australia, who, along with all the others, is also doing what she can with what she has:

Long Covid Awareness month landed at a time when the UK Covid-19 Inquiry is laying bare just how little attention was given to the long- term consequences of Covid infection for children and adults. Around 50% of people with Long Covid now meet the diagnostic criteria for Myalgic Encephalomyelitis. I’ve previously written about my daughter being one of the many very severely affected.

A couple of ‘red leaves’ of solidarity this week from UK Green Party representatives:

• Zack Polanski, leader of the Green Party, speaking candidly on his podcast, Bold Politics, about the need for more funding and to look at more steps for prevention to make sure there is proper ventilation in buildings. He articulated what many people with Long Covid and ME have often felt acutely:

  “But it also feels like the decision makers very often, unless they’ve got someone in their family or they’ve been personally affected by it, there seems to be almost this psychological thing that ‘oh it won’t happen to me and that’s unfortunate for that group of people but we’re just going to get on’”.

  He acknowledged that as ME and Long Covid are not in the public domain, they do not receive the recognition or funding they deserve.

• On a recent visit to our town, and despite a packed schedule, Baroness Natalie Bennett, Green Party peer, took time to listen with compassion and care to my 16-year-old son telling her about his older sister being bedridden with very severe Myalgic Encephalomyelitis following Covid-19 in 2021 and thanking her and Zack Polanski for speaking out for people affected.

Huge thanks to both Zack and Natalie for their solidarity with people with ME and Long Covid.

The Red Tree and ME is just one small creative effort to raise awareness of ME and find genuine hope. Its impact depends on the ripple effect - every share, conversation and act of solidarity helps our message reach further. We’re grateful to everyone who amplifies these voices, especially for the most severely affected who are too unwell to speak for themselves. Real hope for people with Myalgic Encephalomyelitis and Long Covid lies in better awareness and biomedical research.

We continue to raise funds for the research at the University of Edinburgh led by Professor Chris Ponting

Finding any excuse for a celebration used to come easily. Our children have precious memories of family get-togethers for special events, smaller celebrations or ‘just because’ treats. Like many in a similar position, special events have become less frequent and are obviously now marked in a much smaller, quieter way since our daughter became sick, tube-fed and bedridden due to very severe ME.

A favourite special treat place for our children growing up was the lovely chocolate shop in the village. Hot chocolates and bags of chocolate natterjack toads or chocolate honeycomb were their usual go-tos, but they would still spent ages choosing!

The owners of The Chocolate Shop, Rob and Jo, always made them feel so welcome as our children enjoyed deliberating at great length over which individual chocolates to include in specially chosen boxes for family birthdays and gifts.

So, I naturally asked Rob and Jo if they might be interested in creating a limited-edition red leaf chocolate for the One Red Leaf at a Time exhibition. A small business with a big heart, they very kindly offered to help raise awareness of ME and the research at The University of Edinburgh. They are kindly selling limited edition ‘One Red Leaf at a Time’ bags of red leaves bearing The Red Tree and ME logo and a QR code for information about the research at The University of Edinburgh led by Professor Chris Ponting. Jo and Rob are also very generously donating all proceeds from the sale of these red leaf chocolates to Professor Ponting’s research.

If you would like to celebrate someone who has been a source of red leaves in your life (or even just to treat yourself!), bags of 14 milk chocolate leaves, each including a single red chocolate leaf, are now available for a short time only for £4.80 (approx 70g).

For those not local to Southport, postage for any size parcel up to 2kg in the UK is £5.25. For those who celebrate Easter with chocolate (and for those who don’t but who just love chocolate!), please check out their other amazing chocolate creations too. Orders via email please.

The Red Tree and ME project continues to evolve, and it has been deeply encouraging to see how people who have connected with the lived experience narratives and artwork have responded. Many have been inspired to create and contribute their own art, donate to the ME/CFS research led by Professor Chris Ponting at The University of Edinburgh, share information about the project online, or reach out with words of encouragement about how the project has resonated with them.

The recent installation at Chester Cathedral marked an important step in the project’s development as it brought the messages of hope into a public, historic space where visitors could engage with them directly. I understand it attracted a wide range of people and generated meaningful conversations about ME and the need for continued research and awareness. Huge thanks again to the small but incredibly dedicated team of creatives who made this happen and special thanks to Chester Cathedral for providing this opportunity.

The ‘Wonderful things are passing you by’ image in Shaun Tan’s The Red Tree cuts in with a clarity and poignance that sting before landing heavy. The tiny figure who sees without being seen, rooted to the spot while colour, possibility, and life sweep past, captures something many people with ME, and often their carers too, know far too well: the ache of watching the world pass you by, the grief of desperately wanting to move forward but being held in place by an illness that refuses to let go.

The start of another new year without a cure or treatments for ME can bring a fresh wave of pain for many living with this illness. Christmas and New Year often amplify what is already hard, stirring up fresh challenges while magnifying the old ones. It’s a time when many feel especially unseen and unheard, their struggles quiet, private, and easily overlooked in the busyness of the season.

Holding onto hope

Carers also often feel unseen and unnoticed, carrying and holding onto so much -not least love and hope. Sue cares for a loved one with very severe ME and has kindly shared her poem with The Red Tree and ME. Sue’s poem speaks to this experience of being unseen. Huge thanks to Sue for sharing this very raw and moving piece.

Unseen

by Sue Greenwood

This is my life, that you do not see,

Why? I am asking do you not see me,

Years have gone by and I am still here,

But no one,but my carer is anywhere near,

Over the last decade my condition has got worse,

But where is the help? No NHS, no treatment, no specialist, no cure and no nurse,

My life is held in a motion so still,

My disease cannot be treated, or cured by a pill,

Little money for research, is ever given,

Years of government failure for recognition remain hidden,

For it seems that those who have the power do not care,

If they did, they surely would make the world more aware,

Instead, it falls on those who speak up for the affected,

To fight for the thousands of ignored and neglected,

For the desperation and suffering of those with ME,

Is something, it seems, the world does not want to see,

But let me tell you, it is real and by us it is seen,

Like a battle that you could only imagine in your worst dream,

By people like us, who care all night and all day,

Whose love and dedication will never go away,

For caring for someone that no one else sees,

Is just like a dandelion that disappears in the breeze,

Because gone are the lives, that we both loved and once had,

Replaced by a suffering, so terribly sad,

We wait for the day that the world comes around,

For the hope of a treatment to release us from our lives with no sound,

The disbelievers they couldn’t survive one day as we do for years,

It would, I know, make them drown in an ocean of tears,

To not ever, see the light, or dawn of the day,

For the constant loss of not knowing your way,

To not be able to swallow your food,

The continued question of maybe it’s your mood?

To lie flat on your back for years on end,

For the pain of touch, too severe to allow loved ones to tend,

For the sound of the birds to be too much,

For the thoughts of my past to be as such,

For years have gone since the memories of our last walk,

And for the conversations and loving to talk,

For I fear I am sinking into a pit of despair,

Along with my loved one, who I fear may be beyond repair,

I feel I no longer have the strength for the fight,

For gone are the offers of any respite,

But I’m not done yet, and neither are you,

For together forever, we will see this thing through.

Autumn Burn

The stunning piece, Autumn Burn, kindly shared by Anita was painted long ago, and almost forgotten. Its re emergence now feels like its own kind of red leaf: a tiny glimmer of hope, a reminder that even what has been hidden can still offer warmth, beauty, and connection when brought back into the light.

Anita writes “I am very happy to share my painting for encouragement to as many possible. The title of the painting is ‘Autumn Burn’ - a little bit of double meaning as the word Burn here in Scotland is the name of a wee stream too.

The inspiration I got some thirty years ago being amongst the Highlands with its Glens and Bens is still there and I love to paint views from the West Highland Coast but unfortunately my health has lessened the ableness now.

My love for painting is still there and I feel the urge to put paint on canvas again growing inside again - this now being inspired by sharing Autumn Burn with you all. My heartfelt thanks.”

Thank you so much, Anita, for sharing your beautiful work.

The One Red Leaf at a Time International Art Project is still collecting pieces for the virtual exhibition later this year. If you, or anyone you know, would like to contribute a creative expression on the theme of ‘One Red Leaf at a Time’, to support the aims of this project, please register your interest. If you are unable to access the form (e.g. if you do not have a Google account) please send an email to jo(at)theredtreeandme.com and we will send you the details for submitting your artwork.

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

Every year, Chester Cathedral transforms into a twinkling wonderland for its Christmas Tree Festival. With more than 80 beautifully decorated trees lining the historic cloisters, the festival has become a much-loved tradition for families, visitors, and community groups. The theme for this year is “Christmas around the World”. We are really excited to share that, among the many sparkling displays, is a very special installation from The Red Tree and ME, complete with messages of hope from around the world.

The Red Tree and ME is an interdisciplinary creative advocacy initiative inspired by Shaun Tan’s book, The Red Tree. This project brings together creativity, advocacy, arts and messages of hope from scientists to raise awareness of Myalgic Encephalomyelitis (ME), a condition that remains profoundly under-recognised and underfunded, despite its devastating impact. Our tree is not only a festive display but also a symbol of resilience, unity, solidarity and the importance of amplifying voices and the lived experience of people with ME from across the globe.

Visitors to Chester Cathedral in the run up to Christmas and into the New Year will notice that every detail of our red tree has been lovingly crafted including:

• Messages of hope contributed by leading ME scientists and clinicians, reminding festival-goers that international collaboration is crucial to driving progress and that people with ME are not alone.

• Handmade ornaments created and donated by members of the ME community and the Red Leaf Creative Collaborative, with each decoration carrying a story of perseverance and creativity.

• Free information cards available for visitors to take home. Chris Duffett kindly painted ‘Circle Me’ earlier this year and has very kindly granted permission for this to be used on the free cards for visitors to the Cathedral. Inside the card is information about how to donate to our One Red Leaf at a Time fundraiser for the continued ME/CFS research at the University of Edinburgh, led by Professor Chris Ponting.

The Red Tree and ME’s presence at the festival ensures that awareness of ME reaches new audiences. Festival-goers are warmly encouraged to enjoy the tree, read the messages of hope, take an information card and take photos to share on social media to carry its message forward. We also hope that our presence at the festival will raise awareness and increase donations for ME/CFS research at The University of Edinburgh.

Our red tree stands as a testament to creativity, collaboration, collective action and compassion, embodying the spirit of the season along with our best hopes for a brighter future for people with ME and other Infection Associated Chronic Conditions (IACCs).

Special thanks to Amina Hussain for her vision and for very kindly sponsoring the tree. Many thanks also to Amina and to Clare Rayner for decorating the tree so beautifully. Thanks also to the artists for creating such beautiful ‘red leaf’ pieces at very short notice: Jo Baxter, Caroline Fricker, Helen Guy-Roberts, Germaine Hypher, Shirley Kay Mosaics and Louise Kenward. We are also very grateful to Rachael at Kingdom Print for such a quick turnaround on the information cards and, of course, to the team at Chester Cathedral for hosting the Christmas Tree Festival, which is open until Sunday 4 January 2026.

For those able to visit the festival, please share your photos online of our tree and tag us @theredtreeandme #TheRedTreeandME #OneRedLeafataTime. For those who are unable to visit, we hope you can enjoy the photos and are encouraged by the messages of hope being read by so many.

The One Red Leaf at a Time art project, born from the inspiring Messages of Hope shared by scientists and clinicians, continues to grow, and will carry forward well into the new year. That means there is still plenty of time for anyone who would like to contribute their own creative work.

In this post I’m thrilled to unveil more powerful red leaf pieces. A huge thank you to the artists who have shared their work and lived experience with us. I hope you enjoy these as much as I have.

Exciting news! I had hoped to share these pieces before now, but the Red Leaf Creative Collaborative has been joyfully consumed in preparing a last-minute surprise Christmas project that we cannot wait to reveal. Stay tuned - more tomorrow!

One Red Leaf, Many Possibilities

Germaine Hypher @craftingapaththroughillness, United Kingdom - Leaf, paper and recycled sari silk thread

Germaine writes: ‘The Red Robin tree in our garden sheds red leaves throughout the year. I wanted to experiment with sewing one onto paper, so I decided to use cross stitches as this symbol can represent all the things that I can’t do and have to cross out of my life (the leaf being held to the paper like I so often feel held to my bed) as well as being kisses of love and hope. The stem of the leaf leant itself to being extended into the spiral shape - indicating potential creativity and pathways, perhaps invisible at first but being mapped out by the running stitches.’

It’s here, somewhere

Kamea Lessoway, New Zealand - Watercolour on paper

Kamea writes: ‘I’ve never painted before, but supporting this deeply beautiful project was a good reason to try. As I painted, I thought of frontline practitioners, the support staff and caregivers on the sideline, researchers backstage, and the souls stuck in bodies that confine them. The answer might be partially hidden, but it’s got be here. Somewhere. I don’t know you, but I love you; keep going. We’ve got this.’

Season of Change

Kirstie Wilson Love, Scotland - Acrylic on canvas

Kirstie writes: ‘The red leaves flutter as they bring a signal of change. And finally for ME sufferers, the seasons that have passed us by, are finally changing. Finally. The Decode ME study findings bring change for all ME sufferers. It brings validation and the truth that all those with ME knew all along. For too long the seasons have passed all ME sufferers by with no change, no treatment, no cure. It’s been a much neglected illness. Prof Ponting said this study should have been done 15-20 years ago but wasn’t due to stigma and misogyny. But now let these new findings that show significant genetic differences in those with ME, blow the seeds of change. Let each red leaf fall with hope of a real change for us all that have suffered way too long. The red leaves are falling and change is a coming 🍁’

Red leaf in the light

Sally Wemyss, United Kingdom - Red foil leaf on glass

Sally writes: ‘I look at the work submitted for this project and admire it often. Much love and hard work has gone into the submissions. I am no artist but wanted to try doing something to show my appreciation and support for this amazing project. Our daughter has been unwell with ME for almost 4 years. There have been many dark times. But now, occasionally, there are glimmers of hope. Not often but they are there. I felt the light represented this hope. I wanted the red leaves to represent the support that now surrounds us since joining the Parents support group on Facebook.’

Malololelei

Jess Jacobs, New Zealand - Acrylic on Canvas

Jess writes: ‘In 2023 i lived in Malololelei, Samoa which is what inspired this piece.’

Lost and Found

Karen Lewis, United Kingdom - Pen and watercolour on paper

Karen writes: ‘Over the last 5 years I have tumbled down the slippery slope of ME/CFS, from mild to moderate to severe, losing parts of me along the way. I thought I had nothing left to lose but I was wrong. Last year I was teetering on the edge of becoming very severe and I lost hope of ever getting better. Gradually though, things did start to improve and, after months of being unable to do anything except lie down, I was finally able to sit up in bed for short periods of time. Out of the blue my creativity returned and I wanted to draw again. I was amazed and thrilled that part of me had come back. Hope also returned. My art gave me a focus and purpose in life. A reason to keep going. This piece represents how the fabric of my life has been torn apart by illness, but despite that, there is still beauty in it.’

Since so many of you have asked, greetings cards featuring images from the Red Leaf Creative Collaborative are now available to purchase. Each card is a symbol of connection, creativity and care. Cards are blank inside (so not just for Christmas!) We are hoping to make more designs available from the wider exhibition in the near future.

Huge thanks to Dr Clare Rayner for managing the card sales.

All proceeds from the sale of cards will support the Myalgic Encephalomyelitis research led by Professor Chris Ponting at the University of Edinburgh. A One Red Leaf at a Time fundraising page has been set up in collaboration with The University of Edinburgh.

For those who are able to send cards, we hope you will explore our selection. If you prefer to donate to charity instead of sending cards, we would encourage you to consider making a contribution to the continuation of this vital research to better understand ME and find treatments.

We know that times are hard for many, and understand that not everyone is in a position to buy cards or make a donation. However, every act of support matters, and just sharing the link to our project helps amplify awareness and hope. Raising awareness and spreading genuine hope are powerful gifts.

How to order (UK only)

Cards are £6 for a pack of 5 different designs plus £1.60 postage. Please note that the cards are prepacked, so we are unable to take requests for designs not in the set packs.

We especially welcome bulk orders and would encourage groups to mobilise and purchase in bulk to help cut down on posting. 3 packs are £15 plus £3.99 postage.

Unfortunately, we are only able to post to UK addresses.

If you would like to place an order, please contact cards@theredtreeandme.com

In response to questions about fundraising opportunities from our Substack readers, Instagram followers and some of the art groups planning submissions to the exhibition, The One Red Leaf at a Time art project has now set up a JustGiving page with The University of Edinburgh to help fundraise exclusively for ME research led by Professor Chris Ponting to build on the data from Decode ME.

Driven by Professor Ponting’s message of hope for 2025 shared with The Red Tree and ME Substack, we are hoping to ‘do our bit’ to help fundraise, one red leaf at a time, to contribute to effective treatment becoming a reality for people living with this horrible disease.

More exciting developments about fundraisers coming soon…

The Red Leaves I Carry Within Me

Arlene Jackson, Scotland - Collage: watercolour on paper, digital imagery and text; photography

Arlene writes: ‘Along the edge of my local park lies a path, around which the foliage creates a tunnel, illuminated in autumn by a Japanese Maple. Its beauty commands a stopping, a staying still, a taking of a photograph to be kept safe and savoured during darker days spent in relapse bunkers.

I am mostly confined to home, and often bed due to M.E, and this image was captured during my first visit to the park in fifteen years. In the past, I had half-ran along this path towards my nursing shifts at the hospital. When not working, I had pushed my daughter in her pram around this route for hours. On my return as a powerchair user, I steer cautiously around the star-shaped fallen leaves, attuned to their fragility. I follow sensory pathways and reflect on the seasons of my evolving self. Later, I created a collage: watercolour on paper, digital imagery and fragments of text, leaving shadows and spaces to represent my previous healthy self, before marking out a mantra of self-compassion - if you look closely, you will see that the words flagged by the reddest of leaves reference my acceptance and growth, fostered by the joy to be found in the smallest and nearest of places.’

One Red Leaf in the Darkness

Lisa Bryce, UK - Acrylic gel print on paper

Lisa writes: ‘I am the main carer for my 24-year-old daughter who has ME/CFS. Her condition is now becoming severe, and leaving the house has become a real challenge. Her life was so full of promise until ME/CFS forced her to leave university and return home. She now feels as though her life is on hold, with a very uncertain future. There is a lot of pain, grief, and darkness, but she manages to keep a spark of joy alive and we hope for the light of effective treatments at some time in the future.’

Through the Wound, We Flow

Yongxin Chen, Germany - Gouache, Mixed Media paper 21*21 cm

Yongxin writes: ‘This painting emerged from a moment of unwellness - both physical and creative. I was feeling unwell, my hands unsteady, my usual precision abandoned for something more raw and immediate. There was simply this image pressing against my mind, demanding to be released onto canvas. The red leaf, pierced by an arrow and bearing its scars, became a meditation on how we carry our wounds. The leaves marks that become part of the leaf’s story, part of its beauty. Around this wounded bloom, blue forms flow like bodies in various states of being - some lying in rest or recovery, others standing in moments of strength. These figures represent the fluid nature of chronic illness, how we move between vulnerability and resilience, between the need to rest and the desire to rise. “Through the Wound, We Flow” speaks to the paradox of chronic illness: we are both wounded and flowing, scarred and beautiful, resting and moving. The wound doesn’t stop the flow - it redirects it, creates new currents, new possibilities for being.’

Through the darkness

Yvette van Lier, The Netherlands - Photography and painting

Yvette writes: ‘Awareness for ME and hope for a better future for ME patients, treatments, recognition and an end to all not being taken seriously. We too have the right to a full and loving existence. With in memory the lost loved ones, including my dear husband, who died unnecessarily and will forever remain part of the families who miss them so terribly.’

Red leaf, rather past its best

Carole Bruce, UK - Photograph

Carole writes: ‘I have had severe ME for 33 years so I’m often more the shadow than the leaf. Small strands of hope and a generous and wise community of fellow MEers connect me to something greater than this battered leaf of life. May we all be restored to our fullness.’

Everyone has potential

Kolma, Belgium - Aquarelle on paper

Kolma writes: ‘The exhaustion of long covid and ME, but even in difficult times, we all have the potential to make a difference.’

My name is Isaac, I’m 15 years old and my older sister has very severe Myalgic Encephalomyelitis. She had COVID when she was 14 and has been really sick ever since. She is brilliant, funny, caring, clever, brave, determined and hopeful.

My family refuses to accept that things cannot be better for my sister than they are. Like many carers of people with ME, my parents continue to advocate for better care and treatment and to campaign for funding for research into ME.

Inspired by Anna Redshaw’s Blue Sunday for ME, I organised an online music concert for Blue Sunday for ME in 2024 to help raise awareness and to raise money for ME Research UK and Smile for ME. I had no idea how this would go but, with lots of help from some amazing musicians, we raised £1,401. This year, I organised my second concert and we managed to raise even more. If you'd like to watch either of these concerts, they are free to access here.

I was really encouraged to hear that someone the same age as me, whose sister also has ME, watched the first Blue Sunday for ME concert and was inspired to use his skills and hobbies to raise money for ME Research UK. Please read about Nathan’s fundraiser here and support if you are able.

I recently built a new Lego set which immediately reminded me of The Red Tree and ME - One Red Leaf at a Time project. I really enjoyed reading the messages of hope from the scientists who shared their red leaves at the start of the year. Leaf by leaf, piece by piece, I hope we can soon see the end of this horrible disease.

The Red Leaf Creative Collaborative is deeply grateful to the growing community of artists who are helping to shape this project, quite literally ‘one red leaf at a time’. Together, we are building a virtual exhibition of red leaves as a demonstration of creativity, connection, and our collective hope for treatments and a cure for Myalgic Encephalomyelitis. Some of the pieces and narratives shared so far with the Red Tree Creative Collaborative are deeply personal, offering glimpses into the lived experience of people with Myalgic Encephalomyelitis. For some, meaning is found in the quiet strength of nature or human connection; while for others, it is rooted in personal faith.

Professor Chris Ponting, on behalf of Decode ME, was one of the scientists who kindly shared a red leaf message of hope with The Red Tree and ME as we entered 2025 which has helped to inspire and which resonates with some of the pieces submitted so far.

For a community burdened by decades of disbelief, neglect, and medical abandonment, the initial results from Decode ME released this month go way beyond marking a scientific milestone - they shine a piercing light into the shadows, exposing what was once kept hidden and illuminating and validating lived experience. It is in the light of science that hope is nurtured, not as fragile wishful thinking, but as something grounded in objective evidence. For those living with ME and their carers, for whom hope is often frail, these findings provide much needed seams of gold to restore hope.

I am excited to share four beautiful red leaf pieces submitted to the project by UK artists which have resonated with the Red Leaf Creative Collaborative, especially in light of the Decode ME initial findings:

The Kintsugi Leaf Of Hope

Helen Stout, UK - Pastel on Paper using tape resist method

Helen writes: ‘The Kintsugi Leaf Of Hope was inspired by the Japanese art of Kintsugi, where broken ceramics are repaired with gold, giving them new life whilst creating something more beautiful and resilient. I often find that hope is shattered in pieces around me - we suffer so many setbacks, on top of living housebound or bedbound for years, unseen and ignored. The thought that research can provide the gold to piece hope (and our lives) back together is what keeps me going.’

The Enchanted Red Tree

Shirley Kay, UK - Mixed media mosaic

‘The Enchanted Red Tree’ has been ‘inspired by the love, strength and solidarity of The Red Tree and ME project’ and represents a dream for an ideal future where red leaves are in abundance and glimmers of gold are plentiful.

This piece echoes Shirley’s Red Leaf of Hope, again incorporating fragments of mirror, glass, ceramic shapes, glass leaves, millefiori and hand-shaped wire. The complex intricacies of both of Shirley’s captivating works serve as a reminder that when more pieces of the ME puzzle have finally been connected, and research has produced treatments and a cure, we will be able to view the ‘whole’ made up of many the red leaves and glimmers of gold we have found along the way. I visualise being able to look back on the initial findings of the Decode ME study as one of the first, of hopefully many more, significant glimmers of gold in the bigger picture.

Circle Me

Chris Duffett, UK

Chris writes: ‘This painting is called 'Circle me' and is based on the ancient Celtic Cairn prayer. “Circle me, Lord God, keep hope in and despair out. Circle me, Lord God, keep light in and darkness out. Circle me, Lord God, keep life in and illness out.” There are five leaves that form the prayer. Five in the Bible symbolises grace. The gold in the middle symbolises where you are, surrounded by God's grace.'

There will be Golden Days

Vivien Townsend, UK - Acrylic paint and collage

Vivien writes: 'Sometimes I feel on a rocky road or walking through mud . I have come a long way in my 15 years and have good days or even spells of calm and acceptance. This work is full of moving towards light and treasuring each moment of whatever gives us the feel good factor. It's hard not to be overwhelmed at times but now in the autumn of my life I still keep a little hope for breakthrough and a cure.’

The current plan is that One Red Leaf at a Time: an international art project will run through the remainder of 2025, culminating in a virtual exhibition.

If you, or anyone you know, would like to contribute a creative expression on the theme of ‘One Red Leaf at a Time’, to support the aims of this project, please register your interest. If you are unable to access the form (e.g. if you do not have a Google account) please send an email to jo(at)theredtreeandme.com and we will send you the details for submitting your artwork.

As we approach the end of ME Awareness month, The Red Leaf Creative Collaborative is excited to launch One Red Leaf at a Time: an international art project.

I began The Red Tree and ME in December 2024 with ‘The Red Tree’ and M.E. - One leaf at a time, which introduced the concept behind this Substack. The Red Tree and ME draws its inspiration from Shaun Tan’s The Red Tree and its relevance to those living with Myalgic Encephalomyelitis (ME). Shaun Tan kindly granted permission for his art to be used for this purpose.

The responses from the ME community to the first article indicated that Shaun Tan’s masterpiece had resonated with readers who had ME and with fellow carers. As we approached yet another new year with no cure, ever in search of ‘red leaves’, I reached out to leading clinicians and researchers studying ME, Long COVID, and other Infection-Associated Chronic Conditions (IACCs) for messages of hope. Red leaves in the form of messages of encouragement, solidarity, and hope of scientific progress flooded in from multiple clinicians and researchers including: Dr Lucinda Bateman, Professor Ron Davis, Professor Wes Ely, Professor Akiko Iwasaki, Professor Douglas Kell, Professor Robert Naviaux, Professor Chris Ponting, Professor Resia Pretorius, Professor Bhupesh Prusty, Professor David Putrino, Professor Carmen Scheibenbogen and many more.

This beautiful message from Professor Akiko Iwasaki is a particular favourite:

Inspired by these messages of hope, The Red Leaf Creative Collaborative was born: a group of creatives including patients, carers and allies who started to think about how we could use these messages of hope as inspiration for creative expressions that might in turn raise awareness and generate further hope. From photography, landscape art, batik and painting to mosaics, cyanotypes and textiles, the collaborative has already generated some beautiful pieces. We envisage that these pieces will now provide the inspiration for a wider art project to raise further awareness of ME and the need for funding for research, treatments and a cure.

The current plan is that One Red Leaf at a Time: an international art project will run through the remainder of 2025, culminating in a virtual exhibition.

If you, or anyone you know, would like to contribute a creative expression on the theme of ‘One Red Leaf at a Time’, to support the aims of this project, please register your interest. If you are unable to access the form (e.g. if you do not have a Google account) please send an email to jo(at)theredtreeandme.com and we will send you the details for submitting your artwork.

Helen’s daughter, Liz, presented the concert (brilliantly) and walked the audience through the lived experience of people with M.E. and the history regarding why it has been ignored and underfunded for decades. In the second half, the focus was on generating hope for people with M.E. through research. It was moving to see red leaves everywhere and some of the words of leading M.E. researchers projected onto the screen, while the beautiful music created a gentle and reflective atmosphere, allowing the audience to quietly absorb the messages of hope. There were some poignant moments during the concert, especially when Ken performed the flugel part in Karl Jenkins’ Benedictus, an emotionally stirring piece from The Armed Man: A Mass for Peace.

The Help M.E. Concert has already set a ripple effect in motion, with audience members conveying it has changed their perspective and left a lasting impression. Helen’s teenage grandson was so moved by the concert that he nominated ME Research UK as the fundraising focus for his school house for 2025-2026, He has since been made House Captain and aims to use his new position to inform fellow students of the reality of living with ME, recognising that that some of today’s students are tomorrow’s health care workers and researchers.

The Help M.E. Concert is now available to watch on YouTube:

During the concert, Liz explains the significance of the red leaves and introduces The Red Tree and ME ‘Messages of Hope’

Hi, I'm Isaac. I'm 15 years old and my older sister has Very Severe Myalgic Encephalomyelitis. She got sick in 2021 and is now bedridden and tubefed. It’s been really hard seeing her so sick and feeling like there’s not much I can do to help. So in 2024, inspired by Anna Redshaw (the founder of Blue Sunday for ME), I organised a concert for Blue Sunday to raise awareness of ME and to raise money for ME Research UK and Smile for ME. I’ve organised a second concert for Blue Sunday 2025.

My sister and the rest of my family hold onto hope that the science will deliver soon for her, and for 1.3 million people in the UK living with ME. While we are waiting, we need an NHS that’s #ThereForME, and for the government to #Fundtheplan.

The concert includes some performances from people with ME and carers. I’m so grateful to all the musicians performing for their time, energy, and talent. Special thanks to Anna Redshaw, Kate Blair, Susan Lambert-Smith, Amina Hussain, Pete Whitfield, Lisanne Jacobs, Anne Bolt, Holly Holden, Greg Sanders, Erin Hephzibah, Edward Rhodes, Molly Cavanagh, Lakshmi Matthieu, Patrick Ussher, Audrey Dupuis, Mike Smith, Paul Thornton, Amelia Hoff and Tropics of Scorpio.

If you’re able to, you can donate until the 31 May through Eventbrite – all money will again go to ME Research UK and Smile For ME. Don’t worry if you’re not able to donate - I hope you will enjoy and share the concert anyway :)

I care for a family member with M.E. I am also a modern mosaic artist.

Creating a mosaic is both mindful and uplifting. It is a very therapeutic process carefully selecting the correct material, colour and texture to slowly build up a picture.

My mosaics are created using fragments of glass, mirror, wire and other mixed media materials, consolidated with grout to make a complete picture. Each fragment supported by the other, yet allowing each individual piece to shine within it.

This “Red Leaf of Hope” mosaic incorporates fragments of mirror, vitreous glass, iridescent glass, textured glass, millefiori, hand-shaped wire, with a contrasting black glass tile background and black grout.

Red mirror fragments are used to symbolise reflection: whilst living in the present we are also reflecting back on our lives before M.E. as well as reflecting forward, trying to create a better future for our loved ones.

Millefiori are the small circular details which I used to represent the moments of beauty and joy within our lives. These may be small or brief, often everyday things that others take for granted, but within our M.E. world they are recognised and celebrated.

The hand-shaped wire spirals represent the spiral of life, keeping sight of the bigger picture, going with the flow of life and trusting that there will be a better future.

The beautiful iridescent glass fragments create a kaleidoscope of colour when the light hits them, symbolising the importance of perspective, keeping the magic and hope alive.

The small red mirror fragments in the corners of this mosaic represent red seeds, the red seeds that will grow into red trees and produce red leaves of hope for the future.

Every day scientists, practitioners, parents/carers and some people with M.E. themselves, are working to find treatments and a cure for M.E., sharing their knowledge and lived experiences, united in trying to piece things together to create hope for the future.

My personal hope is that one day soon, all the pieces of the M.E. puzzle will finally come together and collectively create a beautiful picture. That picture being a world where there is compassion and understanding of M.E., where investment in research has produced treatments and finally a cure for M.E.

A world where people with M.E. can shine as individuals.

A huge thank you to Louise Kenward for this thoughtful piece for The Red Tree and ME. It has been a privilege to be able to connect with Louise as we work together with the British Psychological Society, combining knowledge, expertise, and lived experience to drive improvements in services for people with ME/CFS.

Along with her knowledge and expertise as a psychologist, Louise’s work is also a testament to the power of lived experience in reshaping narratives around chronic illness and disability and effectively dismantles false beliefs about ME. She has forthcoming chapters in psychology and psychotherapy books and her contributions to psychology and disability rights continue to inspire, challenge and call for change.

Louise has co-produced ‘Disturbing the Body - Speculative Memoir about Disrupted Bodies’ (Boudicca Press: 2021) and edited the groundbreaking ‘Moving Mountains: Writing Nature through illness and Disability’ (Footnote Press: 2023), which centres disabled voices in nature writing.

I am beachcombing the south coast, along Kent and Sussex, near to where I live. I take short slow walks along the strandline to see what the sea offers up. It’s usually a combination of natural and human made objects, a tangle of seaweeds and plastic bottles, fishing debris, shells and egg cases, and occasionally a stranded creature. I’ve found jellyfish and spotted catsharks along this stretch of coast over the last year, but there are also often sick or injured seals, occasionally a porpoise.

They all make me think of something connected to my own body and the demands and parallels of living with chronic illness. The very idea of stranding and being ‘a fish out of water’ feels like a pertinent metaphor to becoming newly disabled by an illness like ME/CFS, and having no bearings or frame of reference for the world you now find yourself in. You now live somewhere entirely different to anything that was familiar or known before.

Beachcombing is something I have done for years, living by the coast. When I was unable to reach the beach, housebound for several years, it was getting to the sea that was (and is) the most exciting thing to be able to do. It is often prioritised before being able to wash or cook for myself.

I’m currently undertaking a creative practice PhD, my beachcombs are now a part of that, as I learn more about post-viral illness and systemic ableism, as well as the diminishing coastline, at risk of flooding and pollution. I’m also co-leading and writing a new set of guidelines for psychologists working with people with ME/CFS, after many years of advocating for improved understanding in the profession, and a change in the NICE guidance, to remove GET and downgrade CBT. With this latter work now done (with thanks to many hundreds of patients and supporters), I am now working with the British Psychological Society to bring together existing knowledge, expertise and experience that can help support psychologists in better supporting people with ME/CFS.

Through this work I have met many brilliant people living with ME/CFS and have reconnected with a number of psychologists (having had to leave my own career in the NHS ten years or so ago). This has included Jo Greer. One of the things she told me when we met was about the value for her of finding metaphor in the book The Red Tree. Finding just one leaf each day was important when so much loss and grief, obstruction and misunderstanding, is associated with living with ME/CFS.

The next time I went to the beach, just a week or so later, one of the first things I found in the strandline was a red leaf. It wasn’t one that had fallen from a tree that was growing, but a plastic one that had weathered the sea. Picking it up I thought of Jo and her daughter and of all the people living with ME/CFS, so often unseen and unheard. This felt like a special leaf to hold on to.

The day I found the red leaf, I was spending a few days in a caravan as part of a residency for my PhD project. I had a plan to teach myself methods of lenseless photography – ways of documenting images using photosensitive chemicals painted on paper and exposing them to sunlight. Cyanotypes are some of the easiest and most popular ways of doing this. I took the leaf and placed it on the paper I’d prepared.

Quite quickly I had an echo of the plastic red leaf marked out in white, surrounded by blue as the paper reacted to being outside in the sun. Natural objects, like feathers and plants, if you leave them long enough in sufficiently strong sunlight, begin to create x-rays – you can start to see veining and detail within the objects. The leaf being plastic, will only ever give an outline of its shape with this method. I was initially a bit disappointed by that, it isn’t an especially interesting image compared to some of the others I made that day. The more I’ve thought about it though, the more it feels all the more pertinent – the absence is clear, to only see an outline of the shape seems an especially meaningful translation of ME/CFS. The object is missing from its own image and the leaf has transformed from red to blue.

May is ME Awareness month and Isaac Greer is organising his second Online Concert for Blue Sunday for M.E. in collaboration with Anna Redshaw, founder of Blue Sunday for ME. For the 2025 concert he again hopes to raise awareness of Myalgic Encephalomyelitis (ME) and funds for ME Research UK and Smile for ME.

Blue Sunday for ME takes place on the 18 May 2025. Registration for a small donation is now live via Eventbrite. The concert will be made available from the 11 May, one week ahead of Blue Sunday.

Elaine’s older daughter and Georgia’s sister, Erin Hephzibah, performed ‘Raggedy Ann’ for Blue Sunday for M.E. - The Concert in 2024, with original lyrics written by Georgia.

‘Still’ is an oil on paper measuring 42cm x 27cm that was created as part of the Red Leaf Creative Collaborative initiated by Jo Greer. It uses a limited palette so that the red leaf stands out as a symbol of hope, as it did on the day I found it, and as it symbolises within the Red Leaf Creative Collaborative.

Jo and I met through our children. Her son, Isaac, organised Blue Sunday for M.E. - The Concert featuring a variety of musicians, including my daughter, Erin. The concert raised awareness of ME and £1401 for Smile for ME and ME Research UK. ME is a cause close to all of our hearts, as Isaac and Erin share the experience of having a sibling affected by life-altering chronic illness.

The week before Jo contacted me about contributing to the Red Leaf Creative Collaborative, I had found a red leaf at my back door. My husband was going through some difficult health issues, and I was feeling overwhelmed managing both my husband’s and daughter’s illnesses, when I noticed the leaf. Finding it felt significant as it was different from the types of foliage in the surrounding area. It gave me an inexplicable sense of hope, so I brought it inside and placed it on my easel, intending to incorporate it into my artwork. A week later Jo got in touch with me.

The image is built around a moment in the story of the Princess and the Frog, when the golden ball has sunk to the depths of the pond. People will approach this moment of the familiar narrative through the lens of their own experience. For me, it portrays a pivotal point between an incident and what happens next; there are different ways to respond, different outcomes, and possibilities all existing in this space between occurrence and action. The scene invites thought and reflection through the moment in the narrative as well as the individual elements in the image. The golden ball draws focus and inspires a meditative gaze, and the eye is drawn through the image by the other details and their contribution to the painting.

‘Still’ is part of my ongoing series of ‘Open Door’ paintings. The ‘Open Door’ series delves into my experiences and subconscious, opening the door to themes in my life. The artworks feature doors that are slightly ajar, giving a glimpse into imagined scenes that are a mixture of narratives, dreams, and lived experiences. When Jo approached me about the Red Leaf project it felt appropriate to create an image as part of this series that is also able to stand alone, unique in its context.

I attended Duncan of Jordanstone College of Art, earning a BA in Fine Art, and later completed an MSc in Art Psychotherapy at Queen Margaret University. In addition to my art psychotherapy practice, I worked as an art teacher for twenty years. My own work is driven by narratives and personal symbolism that help me to understand my own internal world and process my experiences.

‘Harebrained’ is the debut EP from singer-songwriter Erin Hephzibah. Featuring original tracks, Raggedy Ann, Destroying Dandelions, and Year Walking.

Georgia Francis’s debut poetry collection, ‘Fainting Girl’, was released in March published by Quiet Island.

Isaac is organising his second Blue Sunday for M.E. - The Concert in collaboration with Anna Redshaw, founder of Blue Sunday for ME. For the 2025 concert, he again hopes to raise awareness of ME, and funds for Smile for ME and ME Research UK. Erin has kindly gifted another beautiful performance for the concert.

Donations / registration now open at i4bsc.eventbrite.co.uk

“Hope is being able to see that there is light despite all of the darkness.”

Desmond Tutu

My daughter turned 18 in March. Her birthday happened to land in the same month that marked half a decade since the COVID-19 pandemic altered the fabric of many of our lives forever. For a child (now adult), whose last four birthdays have fallen in the shadow of Very Severe ME (a cruel legacy of the COVID virus), the timing of her 18^th birthday was painfully symbolic.

In the same month, proposed cuts to disability benefits in the UK threaten to disproportionately impact vulnerable groups who are already struggling. Charities, public health experts and politicians are expressing concerns that these measures will worsen health outcomes and lead to preventable deaths.

The frustrating irony (if only from an economic perspective) is that finding treatments and a cure for ME and prevention planning would unlock the potential of thousands currently unable to work or study due to this debilitating illness. However, against this backdrop, people with ME and their families in England have been warned that there is no additional funding allocated for the delayed Delivery Plan for ME. Besides the moral imperative, the economic case for #FundThePlan is irrefutable.

The unyielding grip of illness, the failure of society to address the ramifications of this global health crisis, the injustice, indifference, ignorance, gaslighting, lack of urgency, disappointment, discrimination, systemic injustice and lack of candour are all ‘dark leaves’ that threaten to overwhelm.

Inspired mostly by my daughter’s indomitable spirit, hope for me is not about seeking to deny the existence of these dark leaves. We can’t. For us, hope is resistance despite them. Shaun Tan’s ‘The Red Tree’ opens with an oppressive picture where the small girl is almost overwhelmed by dark leaves along with the poignant words ‘Sometimes the day begins with nothing to look forward to. And things go from bad to worse.’ Only on closer inspection of the scene does the reader perhaps notice hanging on the wall a small picture of a red leaf: a symbol of hope in the midst of adversity.

In a rapidly changing world, people whose lives have been turned upside down by ME, Long COVID and other complex chronic conditions frequently associated with an infection desperately need to find ‘red leaves’ wherever they can. Videos recorded for Long COVID Awareness Day by Professor Nancy Klimas and Professor Todd Davenport offer solidarity, real hope and encouragement.

Professor Todd Davenport, Chair of Long COVID Physio and Scientific Advisor to the Workwell Foundation, is dedicated to advancing research and understanding of ME and Long COVID. In this video he unpicks the meaning of hope which he sees as ‘an active process’ that ‘takes a lot of work’. He acknowledges that sometimes hope feels ‘impossible, indefensible and lonely’. The first step, he says, is being honest as this keeps hope from being ‘baselessly optimistic’ and ‘untethered to reality’. Professor Davenport does not mince his words in spelling out the reality of the situation: a world that has moved on, no cures and the scientific evidence base lagging behind what patients and their carers have worked out from lived experience. However, rather than seeing these facts as disheartening, he believes that ‘acknowledging them gives us permission to find the real things to be hopeful about’ including: hope in our community and hope in the clinicians and scholars tirelessly working to find cures. Professor Klimas, Professor Davenport and many of those who have previously shared messages of hope and solidarity with The Red Tree and ME are some of the hope-smiths we look to.

Professor Nancy Klimas, Director of the Institute for Neuro Immune Medicine, Nova Southeastern University, is a pioneering researcher and physician in the field of neuro-immune disorders including ME, Long COVID and veterans suffering from toxin exposure. In this video she speaks of how her prior research offered a head start when the pandemic hit, as existing studies already examined persistent post-viral conditions. Professor Klimas shares examples where emerging knowledge has guided her clinical approach, allowing her to identify and treat specific dysfunctions. While she acknowledges that groundbreaking treatments are still in development, she expresses optimism about ongoing research, likening the effort to historical breakthroughs in HIV treatment.

Here she offers strength for today and hope for tomorrow:

So I’m just gonna say to you: It takes time. Science is methodical. Science is careful. Science is better the more methodical it is and the answers will come for you and they are coming right now and they are coming fast and furious.

I know it’s hard to be patient when you’re so terribly ill but take the hope you need to take [..] because we’re gonna figure it out. We’re gonna find answers for you and we’re gonna keep at it until we do. Hang in there. Let’s go. Let’s cure this thing. I’m all about that. So keep the faith y’all.

To be able to hold onto hope is a privilege, one that not everyone can afford. For some, the weight of systemic injustice, poverty, or despair extinguishes the flame of hope before it can even flicker. It is a privilege to be able to imagine a brighter future, to believe in change, and to have the resources or support to pursue it. For those of us who can hope, let it not simply be a comfort to ourselves, but a driving force for action and solidarity.

Image used with kind permission from Shaun Tan.

Tan, S. (2001). The Red Tree. Hachette Australia. ISBN 978-0734411372.