August 2025

Hello and welcome to August’s newsletter. Hope you have had the best month 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 plants, cuddly toys, nail polish set, hand cream, face masks, eye mask, pamper gift set, socks, fluffy socks, surprise toy, colouring books, colouring pens, pens, notebooks, postcards, lego, fidget toys, mugs, sweets and chocolate.

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 navy polka dot heart donated by our local shop Finishing Touches. Thank you Dave and Sharon for your kind support.

Severe ME Awareness Day

We remember and acknowledge Severe ME sufferers each year on the 13th May with our Merryn’s Smile Day event in memory of Merryn Crofts. You can read more about Merryn’s story on our website: smileforme.org.uk/merrynsmileday

Share a story

This month’s share a story is by Ally. Thank you Ally for writing about your experience of ME and how it has affected you and your family.

When I was 33 I slowly started feeling heavier and getting pains in my back and legs.  I was working as a supply teacher at the time and day by day it was harder and harder to last the day.  I could work less and less until I was told not to return. Swiftly after that I was given my first diagnosis of fibromyalgia, so I had a diagnosis for the pain, fatigue, brain fog and more.

I had two children to look after in addition to caring for my mum but as time went on I was able to do less and less.  People needed to help me more and more with basic tasks such as picking up the kids and I also had to stop baking, something that was my passion, because it was just too painful and exhausting.

3 years after my first diagnosis the fatigue seemed to overwhelm the pain and I was sent to the rheumatologist who confirmed my ME diagnosis.  I know I am one of the lucky ones as doctors have listened to me and believed what I was telling them.  My ME diagnosis was a lot harder to come to terms with compared to my fibro diagnosis but even now I’m not entirely sure why. Coming on top of depression, anxiety, PTSD (which I had suffered for years) and the fibro and found it very hard going.  I only managed to get through it due to my support system and it is something I still rely on every day.

The biggest part of my support system is my husband and two sons who support me both emotionally and physically. I am no longer able to physically care for my mum but we are able to support each other emotionally every day.  I also have an amazing online support system which was formed by getting to know others in similar situations.  This all helps me deal with good days, bad days and worse days.

My life has evolved into something which involves finding solutions to ever changing difficulties, from not being able to stand long enough to make my own lunch to needing a wheelchair when I leave the house.  These solutions involve everything from simply having lunch pre-made every day to buying and using an electric wheelchair.  I used to feel ashamed of these things but once I found acceptance I found a kind of peace.

When my youngest son was 10 he got a persistent cough and after that he started struggling with doing physical things which also started having an impact on his mood.  We were lucky that again, the doctors listened, and he also received an ME diagnosis. We have adapted again using his and my knowledge and experience with his school being very supportive. This has given him an improvement in his day today life but he does still struggle, often trying to hide it for my benefit. As a family we have found a way to communicate and function, often pre-empting crashes and issues and providing support for each other.  I have learned that ME doesn’t just affect the individual but it also affects the people around that individual so openness, compassion and communication is key for everyone.

Fundraising

BED for Severe ME

BED for Severe ME is a fundraiser by Sally, ME Foggy Dog, taking place 29th October. Sally explains more:

“Hey Smile for M.E. crew

You’re an amazing bunch, always lifting up people living with Severe M.E., and ME Foggy Dog wants to say a massive thank you. We’re excited to tell you about something close to our hearts: BED for Severe M.E., and how we’re shaking things up this October.

What’s “BED for Severe M.E.”?

We’re spotlighting the 1 in 4 people with M.E. who are severely affected, the ones for whom bed isn’t just for sleeping… it’s their whole world. Severe M.E. can mean constant pain, blackout episodes, paralysis, heart issues, and extreme exhaustion. Sound, light, even movement can be too much. The NHS has no clear plan for these patients, and that’s got to change. BED for Severe M.E. is all about raising the volume on their voices and driving urgent action.

Why October?

We’ve moved this campaign, from it’s origins on 8th August last year, to October to give everyone – patients, carers, allies, a fresh way to raise awareness that feels hopeful and engaging, while still respecting the importance and roots of Severe M.E. Day in August. October opens up more chances to get involved, have fun, and make some serious noise for those living with severe M.E.

How can you join in?

Let’s make October 29th unforgettable:

• Wear Your PJs to Work! Yep, we’re serious. Whether it’s work or school, don your comfiest PJs to spark conversation about life in bed. This is an opportunity for families and allies to get involved.

• Grab a Badge: Show your support with our BED for Severe M.E. badges. Every penny of profit goes straight to Smile for M.E. and ME/CFS Biobank (Cure M.E.) 50/50 split!

• Fundraising Challenge: Fancy a creative BED-themed challenge?  We’ll have posters, leaflets, and lots of ideas to help you fundraise. Just shout if you need them!

• Donate: In a change to last year’s Paypal fundraising, you’ll be able to head over to the JustGiving pages for Smile for M.E. or Cure M.E., your donations will fuel research and directly support those affected.

• Join the BED ‘Party’ Online: Share stories, raise awareness, and spread kindness in our virtual community space.

• ‘In Loving Memory’ Board: We are honouring loved ones lost to M.E., their memory drives our push for change.

Outside of BED for Severe M.E. Day, ME Foggy Dog (a social enterprise) gives 50% of profits to M.E. research, your support fuels real change.

Thanks for being part of our ever-growing supportive M.E. family. Let’s make this October matter.

Sally, M.E. Foggy Dog

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

Thank you to everyone who has supported us this month. Your kindness and generosity means a lot because it enables us to continue sending Smiles to those affected by ME. We are so grateful thank you.

Thank you for taking the time to read our newsletter.

Smile For ME

xx