April 2025
Hello and welcome to April’s newsletter. Hope you have had the best month possible.
Carers Week
2025 Carers Week nominations are open. We are celebrating carers of ME sufferers during Carers Week 9th-15th June 2025 by sending them a special BearHugs Smile.
ME doesn’t just affect those suffering, it affects those around them who often have to take on the role of being a carer. We hope that by sending a special Smile we can remind them how much they are appreciated.
Nominate: smileforme.org.uk/carersweek 
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 pamper gift set, diamond art, marble paint set, card making set, felt craft sets, bracelet making set, crochet blanket, teddy blanket, fluffy socks, wool, Hot Wheels car, notebooks, colouring books, colouring pencils, coffee sachets, hot chocolate sachets, sweets and chocolates. 
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 handmade clay ornament donated by Tara. Thank you Tara for your kind support. 
“Thank you so much for my husbands gifts, he loved them and it was so nice to be able to do something for him to say thank you for everything he’s does for me.”
“I’m really sorry that I’ve taken so long to send you a HUGE THANK YOU!! I know you’ll understand, but still I want to apologise. I received my parcel from you in early March, and was absolutely delighted with the gifts inside, each one perfect for me and so very much appreciated. My friend KT who nominated me for the gift, also has ME…and we were able to have a video call where I could open each beautifully wrapped gift with her!! It was such a lovely experience! So again, a huge and heartfelt thank you for bringing such sunshine into our lives”
Share a story
This month’s share a story is by Soph. Thank you Soph for sharing your experience of ME in a piece titled ‘Your voice matters’. 
Your voice matters
You could never say the words ME never mind recognise the condition, I built up the courage before each appointment hoping maybe this one would be different and that perhaps I would be taken seriously this time but in the end, I never was, appointment after appointment I left with heavy eyes and an emptiness in my heart, having to explain myself all the time was the most exhausting part for years. The dismissiveness became normal and what I expected at each appointment, part of me felt a relief when I was discharged although things weren’t any better they were very much worse, I was slipping into the hell that is severe ME I was relieved that I wouldn’t need to sit through another degrading appointment again, it shouldn’t be like this, but sadly this is the reality for millions.
I remember at the start of it all I would get asked questions like “Were you feeling anxious today” or they would say it’s normal for teenage girls to collapse I remember the times I was in the hospital I felt almost inhumane and that my illness wasn’t serious my mum telling them that I have ME and the doctor said something along the lines of “oh yeh you often find increasing activity helps that” I just couldn’t believe that it felt like only I knew the severity of this disease and I just felt so hopeless.
I sat through each appointment listening to the degrading “advice” holding back tears as I learned how to advocate for myself, As time went on I felt that I should stop speaking up against doctors who I felt were never going to listen I was so drained and exhausted from explaining myself, at sometimes, I felt what’s the point it’s been years, and they’ve never heard me all I ever wanted was to feel believed I wished for someone to understand for someone to listen and know just as much about my illness as I did. I’ve learnt more from ‘strangers’ online than I ever have from any doctor, I’ve found comfort and felt emotional when someone would message me saying that they found comfort in my posts and that they relate because for so long I felt alone in what I was going through.
In the past year especially I realised the importance of my voice when I started posting awareness videos I felt my story or my voice would probably not make any difference, but as time has gone on I’ve felt more free to share my opinion and not be influenced or judged by others and stand up for what I think is right and for as long as I’m able that is what I shall continue to do it’s the thing I feel most passionate about, those doctors may not have listened to me but thousands of others have, I’m so grateful to have been given this opportunity to share these words with you all, your voice matters and makes a difference in this world never let anyone make you feel otherwise, Soph ????
Fundraising
Excelsior Lodge
A special thank you to Rob and Excelsior Lodge who have completed their year of fundraising for us raising an incredible £5,363.85 culminating with their fabulous Ladies Night recently. Thank you to Rob for kindly choosing Smile For ME as the charity of the year and thank you to everyone involved in so generously making a big difference to us. You raised a wonderful amount of money that will massively help us to continue sending Smiles to ME sufferers and their carers. Thanks to you we are able to continue to show people affected by ME that someone cares and they aren’t alone. 
Em’s Stickers
A big thank you to Em who fundraised for us by selling their hand drawn ‘Coo Beans’ stickers. An amazing £140.30 was raised. Thank you Em and everyone who bought their stickers. We are really grateful for your kind support, thank you. 
Shirley and Sally’s pin badges
A special thank you to Shirley and Sally who fundraised for us by selling pin badges within the Parents of children with ME/CFS support group and family and friends. They raised an incredible £850.33 adding gift aid to make it £1062.91!
The pin badges were produced based on Shirley Kay Mosaics wonderful ME Awareness Mosaic design which she created last year for ME Awareness Day. The design incorporates both the “blue heart” and “blue ribbon” symbols for ME. They hope everyone wears them with pride and they start some conversations about ME. Thank you to the Parents of children with ME/CFS support group for your generous support.
Shirley and Sally, Team SalShirl, we are touched by the kindness you have shown us over the years. You have helped make a big difference to us and this money will fund many more Smiles so we can’t thank you enough. 
Blue Sunday
Next month, 18th May, is Blue Sunday the annual Tea Party For ME fundraiser created by Anna Redshaw.
Enjoy some cake and join in online with the hashtags #BlueSunday2025 #TeaPartyForME2025
Thank you to those kindly planning on supporting Smile For ME, your generosity will help us to continue sending Smiles to those affected by ME.
Donate to Smile For ME: www.smileforme.org.uk/bluesunday
Create your own fundraising page: www.justgiving.com/smile-for-me
Blue Sunday – Tea Party for ME – The Concert 2025
A big thank you to Isaac who has organised an online concert to raise awareness of ME and money for Smile For ME and ME Research UK.
Donate to access the concert: https://bit.ly/bluesundayconcert2025
Isaac shared:
“My older sister has severe Myalgic Encephalomyelitis (ME) and is tubefed and bedridden. I want to do what I can to help raise awareness of ME and to fundraise for research to find treatments and a cure for this horrible illness. Inspired by Anna Redshaw, a person with ME and the founder of Blue Sunday – The Tea Party for ME, I wanted to support Blue Sunday so have organised (and am also performing in) an online concert to raise awareness of ME and also to raise money for ME Research UK and SMILE for ME.
- ME Research UK fund high-quality biomedical research into the causes, consequences and treatment of ME.
- Smile For ME send personalised gifts to nominated Myalgic Encephalomyelitis sufferers and their carers to brighten their day and let them know someone cares.
This online concert will feature a wide range of performances from amazing musicians and performers who have all kindly given their time. There will be closed captions throughout and no flashing lights to make this event as inclusive as possible.
To access the concert please register through Eventbrite by clicking on ‘Reserve a spot’ and making your donation. Once registered, you will be sent a link and the concert will be available from the 11 May 2025.
I hope you will enjoy the concert – maybe as part of your Blue Sunday Tea Party.
Donations will be shared equally between ME Research UK and SMILE for ME. The final amount will be announced online and added to the total raised as part of Blue Sunday.
Thank you for your support,
Isaac” 
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, and a couple from last month too, it can help others to find a smile. 
Thank you’s
Thank you to everyone who has supported us this month. Your kindness and generosity means such a lot because it enables us to continuing sending Smiles to those affected by ME. We are so grateful thank you.
A special thank you to Vicky who kindly donated the beautiful crochet blanket and Justine who generously donated luxury handmade soaps which were included in our Smiles this month.