January 2025

31/01/2025 0 By Smile For ME

Hello and welcome to a new year of monthly newsletters. Hope you have had the best January 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 a plant, flowers, bath bombs, a poster, socks, colouring book and pens, bracelet making set, cross stitch set, crafting felt set, wool, a scarf, Audible gift voucher, mug, tea, angel ornament, rubik cube and cuddly toys.  

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 miniature corked glass filled with a spoon and gold glitter kindly donated by Hannah.

“My son, Kieran, received his smile packages today. Thank you so much to this charity and all of the volunteers. Your kindness has put a smile on my face too! My son has had ME for just over 3 years. He had COVID in September/October 2021 and seemed to recover absolutely fine. Then he caught Glandular Fever in November 2021 and has never recovered. He was a very active young boy, whose stamina and energy was phenomenal. He loved maths, was part of Chippenham Town Youth Football Team and enjoyed watching Manchester City play. All that was snatched away when he got ME. He is now barely able to leave the house, and on the very odd occasion he does this makes him completely bedbound for at least 2 weeks. His close friendship group have been nothing short of absolutely amazing! I can not thank them enough for always being there for my son, coming to visit him at home, and being far more supportive than most adults, GPs and Health Professionals have been.”

“I just wanted to say a huge thank you for such a lovely surprise parcel! All of the gifts were perfectly chosen- I couldn’t have picked them better myself! They brought a big smile to my face after a run of very difficult days – and a very difficult year in fact. Thank you so much, and to my lovely mum who nominated me.”

Share a story

Share a story is a segment in our monthly newsletters where we share a story from someone affected by ME to help raise awareness and remind others they are not alone. If you are interested in writing a piece for us please get in touch: smileformehcharity@gmail.com

This month’s share a story is by Eliza. Eliza Charley. Australian actress and ME advocate explores her complex relationship with hope and looks to redefine it in 2025.

Redefining hope in 2025

“How do you find the strength and hope to keep going?” The request suddenly blinked up in the middle of a Q&A on my instagram. My fingers fell short of the screen as I reached to reply. How do I tell them the answer? I hesitated. Because if I’m being honest… sometimes I don’t.

I’ve had a complex relationship with hope. That feeling of holding on to a vision of a brighter future while facing hardship in the present is something I’ve sought and very much needed. Indeed, hope has often been a great comfort, yet it has also been a source of heartbreak.

Burning through the resource of hope

Too many have tried to sugar-coat the grim realities of Myalgic Encephalomyelitis (ME). In my experience, ME has been a disease that can quickly and slowly take your health, then your livelihood, your connection to society, and even your last means of expressing your identity. The endurance required to survive something like that has been astonishing, especially with limited approved channels for treatment, support and management.

While facing a long-term physical battle – tough enough on its own-  patients have repeatedly come up against systemic barriers and social disdain, both of which have been perpetuated by pervasive misinformation and harmful ideology. And yet I have survived all of my darkest days so far and I have discovered an inner strength to persist… but I don’t feel it all the time.

Through the twisted turns of ME, hope has been a concept I’ve frequently relied on –  and a resource I’ve burned through. At times it’s been a roaring bonfire fuelled by a research breakthrough, policy advancement or finally getting to the top of a medical waiting list. Other times, it’s been a tiny, vulnerable, smoldering glint, like the last glow of charcoal embers, which could be fanned back into a flame anytime with the right resources, but it could also be smothered by one more chilly blast.

Personally and collectively, there have been as many hopeful hills we’ve climbed that have disappeared into a mirage, as those that did become steps toward a better future. How can I keep espousing the importance of hope when so often it can feel like nothing changes?

When hope let go of me

On an old instagram account named “Hope Heroes Co” I used to write about “hope for better”: Better understanding, better support, better research. And although my heart was in the right place, this choice of optimism became harder to reconcile with the ongoing tragedies I was witnessing in the global patient community.

The turning point for me came in 2021. I was six months into a relapse of ME following surgery and had yet again lost work, ability, plans and dreams. Initially I’d remained hopeful things would resolve ‘soon’. With each month passing, I felt reversing my trajectory would surely be just around the corner; or the next corner… or maybe the next. After all, a decade of biomedical research and political advocacy had passed and was starting to bear considerable fruit.

It was 12 years since I’d first contracted ME following a virus in 2009. I had high hopes that help should be readily available and though my strength was waning I could hold on a little longer. Even if we didn’t have all the answers, we’d all learned so much, or so I thought.

Imagine my surprise then, when I encountered the harmful ideologies of yesteryear, only now they were seemingly more entrenched in the Australian healthcare system than ever.

With shock I was hit by my own naivety. I’d mistakenly assumed that healthcare practice had been keeping step with crucial breakthroughs like ditching Graded Exercise Therapy, or at least that they would have done away with the erroneous habit of patient-blaming and psychologisation. I was wrong and it broke my heart.

To add insult to injury, I was frequently being told to ‘have hope’ by the very same people who had more power, more expertise, and more capacity to take actions that could have tilted my future towards a more hopeful one. When hope was wishful thinking, it was leading to apathy. People in a position to create pathways to a better future were wishing us to ‘hang in there’ and ‘get well soon’ while smiling and waving and turning away from us.

I let go of that kind of hope, or perhaps hope let go of me.

If not hope, then what?

I stared at the Q&A box on my phone, still pondering if I had anything of value to say. There was no doubt in my mind that strength and hope remained important to this journey, but these inner resources alone could not change what the future would look like. We are living through the middle of a story still being written. Hope helps us to picture what the ending could look like and strength helps us to believe that it might be possible, but neither changes what’s written on the last page. Only one thing can do that: Action.

People with ME have acted. Despite being underpowered by the very nature of this disease, we have endeavoured politically, scientifically, socially, creatively, and legally, to shift the needle towards a better future.

We have chosen to believe that the harm inflicted on us as the status quo does not have to be carried through to the next generation. And many brilliant allies have joined the cause. There has been important work completed in research, advocacy, support, fundraising, and awareness. Our efforts have made a difference, but they’ve also worn us down. We’ve done our best to rally for reinforcements. Dare we hope that 2025 is the year the cavalry is coming?

“How do you find the strength and hope to keep going?” I decided to be honest. “Sometimes I don’t. I let myself sit with the pain. I lean into the swings between acceptance, and advocating for better; adapting to the present, while advocating for a better tomorrow. And on the days I can’t hold hope for myself, I ask others to hold hope for me instead.”

Eliza Charley

Website: www.elizacharley.com

Instagram: @ElizaCharley

Twitter/X: @ElizaCharley

BSky: @elizacharley.bsky.social

GoFundMe: https://www.gofundme.com/help-eliza-access-new-critical-round-of-apheresis-treatment

Fundraising

Bake4ME

Bake4ME’s The Wicked Christmas Bake Off in support of Smile For ME came to an end. A big thank you to everyone who joined in and supported. Brilliant bakes were created and money raised for Smile For ME to enable us to continue sending Smiles to ME sufferers and their carers. Thank you to Jennie Jacques for creating the fundraiser, to everyone who baked, to the collaborative bakers for helping to bake on behalf of those too poorly so they could still be included and feel a part of something and to the judges for picking the star bakers and donating prizes.

Congratulations to the star bakers:

Whitney – Home Star Baker with her fabulously decorated cookies

Daisy Chain Cupcakes – Professional Star Baker with her wonderfully detailed half and half cake

Erin – Tiny Star Baker with her amazing pink and green cupcakes

The star bakers all won a Wicked musical programme signed by the leads Laura Pick who plays Elphaba and Sarah O’Connor who plays Glinda, and autographs from the Wicked movie stars Karis Musongole who plays young Elphaba and Hattie Ryan who plays Curious Munchkin. Karis, Hattie and Lauren Kelly Casting also generously gifted the tiny star baker a mini camera to capture more bakes.

Naomi’s Christmas cards

Last year Naomi raised money for Smile For ME by selling handmade Christmas card. Thank you Naomi for your kind donation and support.

Blue Sunday

18th May 2025 a date for your diary. Blue Sunday, The Tea Party For ME annual fundraiser created by Anna Redshaw.

Thank you to those who have kindly supported Smile For ME previously, you have helped make a big difference to us. Nearer the date we will be sharing more information about how to donate to us during Blue Sunday 2025 if you wish to do so.

Smile of the month

What’s made you smile this month? Each month we ask this question on social media and we love hearing the responses. We hope by sharing some of your smiles it can help others to find a smile too.

Thank you’s

A big thank you to everyone who has supported us and donated this month. We are so grateful for the kindness and generosity you show us. It means such a lot because it enables us to continue sending Smiles to those affected by ME.

Thank you for taking the time to read our newsletter.

Smile For ME

xx