June 2025

Hello and welcome to June’s newsletter. Hope you have had the best month possible.

Carers Week

This month, during 9th-15th June, we celebrated Carers Week. Carers Week is an annual campaign in June to raise awareness of caring. Smile For ME have joined in with this event since 2018 as we want to highlight carers of ME sufferers. ME doesn’t just affect those suffering, it affects those around them who have to take on the role of being a carer.

We celebrated some of the wonderful carers of ME sufferers by sending 40 special BearHugs Smiles to thank them for all they do and to show them how much they are appreciated.

Sending a big hug to those caring for a loved one. You are amazing and everything you do is much appreciated not just during Carers Week but always.

Special touch

Included in the Bear Hugs Smiles sent this month was a hand written note by the nominator in a Fox Under The Moon card.

A special thank you to BearHugs for helping us to send Smiles to some amazing carers again this year. Since 2018 we’ve chosen to partner with BearHugs for our Carers Week special event and they’ve sent their wonderful Hugs to our Smile nominees.

BearHugs is a brilliant company which sells personalised postal gift hampers in a signature box which opens to reveal two outstretched paws and a ‘Consider this a BearHug’ message. Founded by Faye, a chronic illness sufferer, they spread kindness through a thoughtful hug. For every 50 BearHugs sold, they send a special personalised gift box to someone who has lived experience of disability or chronic illness through their Hug Nominations. We love working with them and being able to support the wonderful work they do whilst they help us to acknowledge and thank carers of ME sufferers.

Thank you Jared, Faye and BearHugs for your help in creating smiles.

Carer appreciation

During Carers Week we asked you to share your carer appreciation so we could help spread the love and thanks to some wonderful carers.   

Share a story

This month’s share a story is by a carer. They anonymously share about their experience of caring for their teenage son and the human cost.

Our son’s rapid descent into severe ME was devastating. At 16, he had just started sixth form at the selective state college of his choice. Autistic (PDA profile) and a motivated A* student, he studied four A-levels and an EPQ, cycled ten miles daily, had close friends, and a full social life.

Earlier that year, he lost his grandmother. Later, I was diagnosed with breast cancer, which we shielded him from until after GCSEs.

After catching a non-COVID respiratory virus over Christmas, and initially recovering, he began showing worrying symptoms: debilitating fatigue, migraines, dizziness, nausea. Eating and drinking became limited—worsened by new braces. He became bedbound, left education, and could no longer engage socially or with family. His memory, cognition, and focus declined. Watching our precious, bright, active child’s world shrink was heartbreaking.

Medical tests ruled out various conditions. POTS was a possibility, but no local specialist was available. ME/CFS was never raised by NHS clinicians. It was our son, through his own research, who first suggested ME—suddenly, things started to make sense.

Feeling helpless, we sought a private paediatric cardiologist, who diagnosed both POTS and ME. He recommended immediate withdrawal from school, full rest, and medication, which our GP supportively prescribed, along with a referral to the local young people’s ME service. This all unfolded within four months.

I’m no stranger to caring—both my parents had long-term health needs. Our son’s autistic needs have often been masked or misunderstood. Family life has always been complex—our younger son is also neurodivergent (ADHD)—but I still see caring as a privilege. It’s love that drives us to protect and advocate.

His PDA need for autonomy, complicates his care. ME has stolen his freedom, interests, and relationships. The suffering is immense, support is inconsistent. Now 18, he’s been out of education for 15 months, while peers plan for university. He clings to control where he can.

Being his mum feels like hugging a velociraptor. Parenting a teen is always a dance between care and independence, but this illness intensifies it. He needs to know we’re his safe space while asserting his autonomy in a deeply distressing situation.

The Human Cost

There are no battalions marching in when we can no longer stay upright. This was especially true after his serious suicide attempt due to ME suffering. We now live with ongoing fear, uncertainty, constraint and no mental health support. For six months, he hasn’t been left alone for more than a few minutes. The trauma of that day will never leave us.

Carers carry lifelong knowledge of their loved ones needs – we are their care and safety plan, yet we’re not treated as equal partners nor offered much support. We’ve never been offered a Carer’s Assessment. This lack of recognition deepens the emotional toll.

It’s agonising every time I enter his room, with food or drink, only able to whisper a few words due to his extreme fatigue and sensory sensitivities. Inside, I’m screaming—I would do anything to take away his suffering.

There’s guilt and fear we’re not doing enough. Questioning myself endlessly. A constant, layered grief, compounded by professionals’ lack of understanding or integrated interventions. Services are siloed. The lack of a holistic approach compounds stress. I frequently identify current and future needs and risk factors that have been overlooked or ignored, chasing services repeatedly for responses, needing to have conversations about reasonable adjustments prior to any interaction with him. I act as care coordinator, constantly advocating, engaging, and preparing professionals—often repeatedly—because without understanding his autism and ME, his treatment is jeopardized or rejected. The level of energy he expends on interacting can be very costly in terms of post exertional malaise (PEM).

He can’t attend in-person appointments; ME makes them too disabling and could trigger deterioration. My successes in advocating are in securing a closed room in A&E using guidance from Supporting People with ME in Hospital, and being taught how to apply a 24-hour ECG at home.

I thought that by now—my kids being older—I’d have more freedom, time to pursue passions and use my skills. Instead, I work only sessionally for the NHS and a CIC. The future looms heavily. It’s hard to see how this is sustainable, after years of caregiving already. I try to stay present, taking one day at a time. Lack of coordinated support worsens stress, isolation, and my own health. I live with chronic conditions and am neurodivergent—pacing is essential, but not always possible.

Nature offers brief respite. I find peace in the garden—observing wildlife, noticing the seasons. Weeding is therapeutic when I have energy. Exercise, time with friends, breaks away on my own (with my husband holding the fort), help to press pause. But the emotional and physical toll of this illness, the layers of complexity, break pieces off me. How to keep a marriage strong in the midst when there is little time outside the home together? We support one another by giving each other breaks. We sense God strengthens us and gives us His light to keep taking the next steps and persevering.

We rely on our church and a few friends for occasional respite and time with our younger son. It’s a very difficult balance to tread between trying to remain hopeful and positive and being realistic. The grief and pain is visceral. Life often seems like I’m viewing it through a black and white lens. My world has shrunk, and I’m caught in sinking sands. Fellow parents, of other young people with ME, who I have connected with online, having been an amazing source of information, guidance and affirmation.

Siblings

His younger brother is a Young Carer and has lost much of his connection with him. We can’t go out together, or holiday as a family. Even everyday plans require another adult to be present, due to ongoing suicide risk. Thankfully, school offers Young Carer support. Still, the trauma of his brother’s suicide attempt remains with him too.

Nearly 70% of schools claim to have no young carers—yet likely two exist in every classroom.

Final Reflections

We have seen an egregious push to reduce resources. In the case of ME, our lived experience is that the more severe it is, the more invisible you become and the less care you receive. The current government message seems to emphasize a person’s worth purely in their productivity economically, with the changes to PIP and SEND support. It is a dangerous metric that further devalues the most vulnerable. These changes will have a deleterious effect on carers too. It feels like an erosion of humanity and value.

Yet, I affirm that caring is a privilege. It is not easy. It can be isolating, exhausting, and sometimes thankless – but rooted in love. In a world that so often measures people by what they can produce, to care, to sacrifice, is to insist that everyone matters. This is especially important for so many ME sufferers, hidden, abandoned, disbelieved and neglected.

I don’t know what the future holds, but I know this: what we do matters. We matter.

Fundraising

Bricks for ME

Bricks for ME is an upcoming fundraiser combining Lego fun with ME awareness. Thank you Brick M8 for kindly supporting us. If you live near Cumbernauld you can buy a ticket: https://www.ticketsource.co.uk/bricksforme  

More information:

“Bricks for ME is Brick M8s newest event and it is coming to Cumbernauld. As with all Brick M8 events, Bricks for ME is a charity event and we are raising money for Smile for ME, a UK charity for ME sufferers and carers of all ages.

On the 26th July LEGO builders will be coming together at Cumbernauld New Town Hall to show off their latest builds and raise awareness of ME (Myalgic Encephalomyelitis). In addition to displays we will have our brick pit packed with LEGO bricks and other activities where you can let your creativity run wild! We will have our popular charity ‘everyone’s a winner’ LEGO tombola and will be selling loose random LEGO parts (not the brick pit bricks!) with the money going to charity.

Accessibility/quiet time: Accessibility is central to this event, the venue is not only is it fully accessible but there is disabled parking with flat access not only next to the venue but a few minutes walk away. We in the Beechwood suite (upstairs) but there is a lift. We also plan a layout which will be wide and suitable for those with limited mobility and wheelchairs. While we cant guarantee it will be ‘quiet’ we are limiting numbers with the aim to help those who have sensory sensitivity.

Tickets are £4 for ages 5 & over, 4 & under go free with a paying adult (free ticket still required) with all profits going to charity. It will be smaller than our regular events with average time we expect people to spend in the show is about an hour, you are free to stay longer though!

Show times : Saturday – 10am till 4pm

Note 15s and under must be accompanied by an adult.”

Help M.E Concert

Thank you to Helen, Wotton Silver Band, Round The Edge Community Choir and everyone involved alongside all those who supported the Help M.E. Concert. It was in support of Smile For ME, ME Research UK and ME Association and an amazing £410 has been raised for Smile For ME. Thank you for helping to make a difference to us.

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

Helen wrote a summary of the event:
“AN EMOTIONAL, ENJOYABLE AND MIGHTY EDUCATIONAL EXPERIENCE”

THE HELP M.E. CONCERT on Saturday 26th April was an entertaining afternoon of music, singing and raising awareness of M.E. In amongst the music from the brass band and the choir, the first half focused on what it’s like to live with M.E and why it’s largely been ignored and underfunded for decades. The theme of the second half was hope for the future, with a video message from Dr Shepherd and quotes from researchers around the world (courtesy of Jo Greer, The Red Tree And M.E.)

THE MAIN AIM of the event was a challenging one, that of raising awareness of M.E to those outside the M.E community. So we were pleased when many of the 230 members of the audience, band and choir commented afterwards that they hadn’t realised how serious and debilitating M.E could be or how underfunded it is.

“It was a joy and honour to be part of that beautiful event. It certainly was very educational for us – a real eye-opener that I feel we all needed to see and carry forward with us in our lives.”

INSPIRING THE NEXT GENERATION
We’re also delighted that our 15 year old grandson, Carter, was so moved by the concert that he requested M.E Research UK be the fundraising focus of his school house for next year. As a result, he’s been made House Captain for 2025-6 and is aiming to inform students of the reality of living with M.E. as well as inspiring those who could be the researchers and medical staff of the future.

Blue Sunday 2025

Last month was Blue Sunday, the annual Tea Party For ME fundraiser. An incredible £2,754.81 was raised for Smile For ME.

A heartfelt thank you to the creator Anna, and everyone who so generously supported. A special thank you to Isaac, Laura and Sharon, and Dee who held fundraisers to us for Blue Sunday. We are really grateful.  

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

It means a lot to receive the generosity from those who have kindly supported us this month. Without you we would not be able to continue sending Smiles to ME sufferers and their carers so we can’t thank you enough.

 

Thank you for taking the time to read our newsletter.

Smile For ME

xx