April 2023

30/04/2023 0 By Smile For ME

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

Carers Week

2023 Carers Week nominations are now open. We are celebrating carers of ME sufferers during Carers Week 5th-11th June 2023 by sending them a special Smile in partnership with Bear Hugs.

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 hope that by sending a special Smile to carers of ME sufferers during Carers Week we can remind them how much they are appreciated.

Find out more and how to nominate: smileforme.org.uk/carersweek



12 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 blankets, cosy socks, hot water bottle, heatable cuddly toy, tea, coffee, mug, hand made crochet mug warmer and coaster, hand cream, essential oil, face masks, eye masks, hair bands, crystals, Star Wars lego set, cat wire ornament, cherry blossom fairy lights, guitar picks and chocolates.

“The coffee and the lego were for my husband and he absolutely loved it! He is such a fantastic support of me and it was so nice to give something back go him for once. Thank you so much for making him smile! Xxxx”

“Thank you so much for sophs smile today. She’s been in and out of hospital this last week and it came at the perfect time. We appreciate you so much xxxx”

“Thank you so much for the smile you sent for my daughter Mae. The parcel arrived while Mae was at an appointment, she was excited when she saw it when she got back. The gifts were lovely and she was so happy. We sat outside in the sun while she opened them. Thanks again”

Share a story

This month’s share a story is by Jo Saxton. Thank you Jo for sharing your story of hope with your son going from being bed-ridden with fatigue to returning to secondary school to sit his GCSEs. Acknowledging the difficulties you’ve been through but giving hope that things can be better.

‘Hope doesn’t require a massive chain where heavy links of logic hold it together. A thin wire will do…just strong enough to get us through the night until the winds die down.’

– Charles R. Swindoll

Six years ago, our 10 year old happy, sporty son became chronically ill and bed-ridden with fatigue. We hoped our GP would help us navigate the NHS to find the specialists to make him better. Like so many with chronic fatigue, this didn’t happen. Our son just received the CFS/ME ‘label’ and the blanket treatment option of CBT/GET – which we politely declined. However we felt we needed to find the root cause(s), and optimism gave us the hope and energy to search.

Looking after a chronically-ill child, coping with disappointment of the medical profession fobbing us off, and dodging the anticipated safeguarding issues that were thrown at us was very stressful. Not knowing how to help our own child made us feel helpless. However we connected with people in social media groups who were going through the same thing, and ultimately found a path that felt right for us. Building a ‘community’ of supportive people around us from whom we could ask advice, and a connection with others going through the same thing– either face-to-face or online – was so important and it made a huge difference to us.

Each person with CFS/ME is unique, and the cause of their illness – and therefore the appropriate treatment plan – is individual to them. Tests showed our son was severely fatigued, and had Lyme disease and mould toxicity (from his primary school classroom’s leaky roof!), and all the accompanying complications such as food sensitivities, heavy metal toxicity, electro-sensitivities, POTs, etc. All of these were causing a systems imbalance in his body resulting in poor mitochondrial function. No wonder he was chronically-ill and exhausted!

Like a lot of people, we did the usual ‘scatter gun’ approach – trying anything and everything – and then gave up after a year as we didn’t feel it was working.Looking back, this wasn’t the right approach for our son and we spent a lot of money on supplements and alternative therapies that various online health ‘experts’ and social media groups advocated. It did get quite crazy and we felt we were losing our son’s confidence in our ability to help him. Functional medicine approaches to tackle the Lyme and mould helped to a point, but the fatigue was always there in varying degrees and no-one seemed able to completely eradicate it.

So we went back to the drawing board and focused on lifestyle factors, such as nutrition, sleep/relaxation, stress, movement/exercise, and connecting with friends and family to keep his spirits up. We also made sure his environment was ‘clean’ and devoid of as many chemicals, perfumes, pesticides, toxins as possible. There’s much we can do to help ourselves and it doesn’t need to involve a lot of money for private testing. Not everyone has deep pockets after all. Just focusing on the basic lifestyle factors, such as sleep and optimising your circadian rhythm can make a huge difference and doesn’t cost a penny!

During our son’s illness, I read a lot about mind-body medicine. I discovered that the way we interpret our world can affect our physical and mental health, and that being negative all the time directly impacts the immune system and may lead to a negative outcome. When I read that optimistic people have better life satisfaction, relationships, physical and emotional resilience, better immune response, and live longer lives, I thought keeping an optimistic attitude was the best thing our family could do, so we focused each day of what was going well for us. We struggled with it sometimes but that was our goal. Also, when someone has been ill for a long time, it’s hard to see any tiny health improvements. You don’t get better overnight, no matter how much you wish for it. We therefore tried to remind ourselves at regular intervals of any positive progress our son was making. It was a good way to track progress, to celebrate our wins, and to keep us motivated, no matter how small the gains.

When you’re chronically ill, the last thing you want to do is to listen to the ‘positivity culture’ we’re bombarded with on social media! I just want you to know that it’s normal and perfectly okay to not be optimistic all the time. Goodness knows my family and I had bad times when we felt we’d reached rock bottom – a lot! It’s important to allow yourself to experience the full spectrum of emotions – optimism through to despair and everything in between – and to surround yourself with people who will support you with that. We’re all human after all.

I read some research which showed that focusing on what is going well in your life –no matter how trivial or small that may be – can help to flip the switch in the brain, resulting in better health outcomes. So on our good days and when I was feeling ‘strong’, I would ask myself questions, such as:

– ‘What has made me smile today?’

– ‘What can I control today?’

– ‘What support would be helpful right now, and who can I ask?’

I first heard about the charity, ‘Smile For ME’, on a Facebook group and was encouraged by others to nominate my son for one of their ‘Smiles’. I didn’t think for a million years that he’d receive one – I’m never that lucky with winning things! However one day a package DID arrive for him. He was thrilled to bits and it really boosted his mood to receive gifts from people who didn’t know him, but who cared enough to just want to put a smile on a stranger’s face. The smallest of gestures from this wonderful charity has a profound impact on people. Just knowing someone cares can mean a lot to people, especially to those living with a chronic illness with little or no support.

After years of disrupted education, our son has returned to secondary school and is about to sit 7 GCSEs, the minimum to get into college. If we’ve learned anything over the past few years, it’s the importance of pacing, always leaving something in the tank, and supporting good mental health! He’s back to his sports, has a wonderful social group and is optimistic for a brighter future. He now has a better appreciation of how his body works, and the tools to maintain good health as an adult. He wants to study a health qualification at university but hasn’t yet decided which. We couldn’t be prouder of him and the resilience and tenacity he has shown through all of this.

I’ve now qualified as a Functional Medicine Certified Health Coach. I would say thatI’ve always been a ‘helper’ through life, and so being a health coach is my dream job. I’m not a medical doctor, but I do have a science background and a deep love of learning. I have spent over six years learning about health coaching and functional medicine, and how lifestyle choices can directly impact health and wellbeing. I want to give people the hope that things CAN be better, and to support parents with chronically-ill children and teens on their journey to recovery. After all, I have that t-shirt!

I’d love to hear how you stay optimistic, and how your experiences with chronic illness and those difficult moments along the way have led to a positive and unexpected outcome.

Wishing you all the best.

Jo Saxton





Blue Sunday

Blue Sunday, The Tea Party For ME created by Anna, takes place 14th May.

Blue Sunday is a day for the ME community and their allies to come together whilst fundraising for ME charities. Enjoy some cake and join in online on social media with the hashtags #BlueSunday2023 #TeaPartyForME2023.

Thank you to those kindly planning on supporting us, your generosity will help us to continue sending Smiles to those affected by ME.

Donate to Smile For ME: www.smileforme.org.uk/bluesunday


Bake4MECFS is a virtual baking competition fundraiser created by Jennie Jacques. The theme for this Bake 4 ME/CFS is Outer Space. It will launch 5th May in line with National Space Day and be open until the 31st May.

For more information check out Bake4MECFS website: www.bake4mecfs.com

Donate to Smile For ME: www.gofundme.com/f/bake-4-me-cfs-smile-for-me

Thank you Jennie and Bake4MECFS for kindly choosing to support us.


May Charity Streams

Cosy Gamer Lo is streaming on YouTube throughout May to raise money for us. Check out her streaming schedule below to support. 

Youtube: www.youtube.com/@CosyGamerLo

Instagram: www.instagram.com/cosygamer_lo

Twitter: www.twitter.com/cosygamerlo

Donate to Smile For ME: www.smileforme.org.uk/donate

Thank you Louise for your kind support.


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 such a lot because it enables us to continuing sending Smiles to those affected by ME. We are so grateful thank you.

A big well done and thank you to Rhi who ran the London Marathon and kindly chose to support us raising an amazing £265.

A special thank you to Justine who donated some wonderful handmade luxury soaps.

We have recently been lucky enough to have had extra generous support from some one off donations which has meant for our upcoming special events, Merryn’s Smile Day and Carers Week, we are able to increase the number of Smiles we are sending from triple to quadruple the number we send in a regular month and spread the Smiles wider. Donations and fundraisers really do make a big difference to us as they help us to continue sending Smiles to people affected by ME. If you would like to help us to continue sending Smiles all the ways you can support us from donating to supporting at no extra cost to you can be found on our support us website page: smileforme.org.uk/supportus


Thank you for taking the time to read our newsletter

Smile For ME