May 2023

31/05/2023 2 By Smile For ME

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


Merryn’s Smile Day

On the 13th May we celebrated Merryn’s Smile Day. We sent 48 special Smiles, quadruple the number of a regular month, to Severe and Very Severe ME sufferers in Merryn’s name.

Our Merryn’s Smile Day Smiles are slightly different to our regular Smiles. We offer 5 options, balloons, cosy accessories, cuddly toy, flowers or plant which are then personalised to each individual. The Smiles are not wrapped as opening presents with Severe ME can be difficult in many ways, however they are still packaged with love which Merryn radiated. Inside each Smile was a rose quartz heart as Merryn loved rose quartz.

You can read more about Merryn’s story and who she was as a person written by her Mum Clare on our Merryn’s Smile Day page:

A special thank you to Claire who beautifully personalised the eye masks with the recipient’s names.

Another special thank you to our lovely local shop Finishing Touches for their kind support with helping to supply the Jellycat cuddly toys.

Finally a special thank you to Emma who kindly made and donated the wonderful crochet sunflowers which were sent in some of our Smiles in Merryn’s name.

“Thankyou so much. I love my things especially the green bunny he’s so nice and soft. I would like to thank my gorgeous husband for nominating me for smile for ME and give thanks for the dedication he puts in looking after me and loving me. Thankyou to merryns team for my beautiful gifts! Your always in my heart beautiful merryn..lots of love kels xx”


“Thank you so much @SmileForME Eli was nominated for a special Smile by her brother and this beautiful present arrived for her today. This happy post has really brightened her day.”


“Wow just wow thanks @smileforme this gift is just what @mrsmarsh2016 needed had a terrible weekend with health and this just made her smile”


“Hiya happy Merryn Smile Day! I need to say a HUGE thank you for my beautiful flowers and the rose quartz heart. The flowers are the most beautiful ones I’ve ever seen – the colour! Omg. Can’t stop grinning. Thank you so so much”

“I received a smile from my mum today. It really brightened my day. Thankyou. I’ve attached pictures my tattoo needs a top up as it lost some pigment when it was healing but I’m sure you can see who he is hehe. Hes blue, eats and sleeps so I pretend he’s my spirit animal ha”


“Thank you so much for my daughter’s beautiful flowers. She has some in her room and they complement her colour scheme perfectly. We have put some on the landing so she sees them as well. She LOVED the pink heart that was sent with the note. Thank you. What a very special way to celebrate Merryn. What an encouragement it was for me as well. thank you for all you do.”

“Received ours today, thank you so much. Definitely brought a smile to her face. She absolutely loves the socks and blanket (I do too, wonder if she will share?!) Thank you”

“Thank you so much for sending Alex his Merryn smile. He loves his new Snake plant and the gorgeous pot – that has been recycled from fishermens nets and other ocean plastic it will sit in pride of place in his bedroom. Thank you so much Smile For ME for everything you do. We are thinking of Merryn and her family today”

“Such a gorgeous surprise today from Smile For ME, after being nominated by the lovely Ali Head. (Meg sulked because she couldn’t have the flowers, so had to be told that the card was for her.) I’ve been so frustrated by all the things I can’t do in the garden and yet another spring where woods filled with bluebells elude me. So bringing outdoors inside is the very best ‘smile’. I’m fortunate that I can tolerate quite a variety of fresh flowers, unlike so many people with M.E. It is a privilege I cherish – especially during this awareness month – and my thoughts are with all those who are denied it. It’s easy to focus on what we don’t have when the list of missing opportunities and experiences looms so large over what remains accessible. Now as I rest I have the perfect reminder that even a small life can be beautiful, and valuable, and filled with exceptional people. Thank you!”

“I just want to thank you for my daughter’s gifts. It really did put a huge smile on her face- one we’ve not seen for a long time. Thank you for brightening up what has been a very hard time.”


“Thank you Smile For ME for Ryoos beautiful flowers. Ryoos never had flowers sent to her before and loves then. The colours are beautiful xxx Thank you for making her smile.”


“Holly loved her smile for Merryn. Thank you #smileforme”


“Thank you so so much for my beautiful merryn smile. It really brightened my week and will for a long time, it is so lovely to have in my room to bring a bit of nature in when I can’t go out. They truly are such thoughtful gifts and I’m so grateful. And thank you on behalf of everyone severe and very severe who’s received something from you. It truly helps so much and is so kind, such a lovely charity”


“Thank you so much for Alec’s wonderful gifts. The jellycat kitten cuddly and socks are so soft and the rose quartz heart with the message about Merryn made us both emotional. It’s been a tough week here and this definitely put a smile on his face.”

“Massive shout out to the incredible charity that is @SmileForME for my Smile and those who nominated me. #merrynsmileday I got these stunning flowers, a beautiful rose quartz heart, and card… but I also got hope, love, and a little bit of extra fight. Thank you #MECFS”


“Dear Smile for ME, I just want to say a huge thank you from the bottom of our hearts for sending Sienna a Smile for ME gift! It arrived today and included was the most beautiful Whippet teddy which happens to be her absolute favourite! There were several other kind and thoughtful gifts also. It’s been an awful 18 months, going from a talented ballerina to almost housebound. Navigating GCSE’s at home. We are awaiting all struggling. This gift put a smile on all our faces and touched our hearts. Thanks so much”


“Thank you so much for my merryn smile. It arrived with the most incredible timing. I was waiting for a call from my neuro surgeon and was getting really stressed and anxious when mum appeared in my room with the big box. It created a huge distraction until he called! They are mg favourite colours and I’ve been watching them gently float around my room this week. Thank you”


“Thank you @smileforme for Alex’s beautiful. flowers on Merryn’s Smile Day. You are an incredibly special charity and we love all that you stand for, and do. Merryn lost her life just days after her birthday at the tender age of just 21. She had endured years of suffering at the hands of Myalgic Encephalitis. Her radiant spirit remains with us always.”

“I got a wonderful surprise this morning. Thank you Clare and Merryn“

ME Awareness Day


Share a story

This month’s share a story is by Olivia Meads. Olivia raises awareness of ME, a neurological classified disease, and how at age 15 her life changed irrevocably. Sharing a snapshot of her symptoms and her wishes. Thank you Olivia for sharing your story.

I’m Olivia Meads, 27 and live in Wigan. I have Severe M.E and several other related illnesses, including PoTS. I’ve been ill for 12 years and for the past 10 I’ve been classed as Severe and 95% bedbound. This is a bit of my life over the past 12 years of illness. 

I got ill at age 15 and my life has changed irrevocably. Until then I had a very busy and active life – I used to do a lot of dancing and acting (street dancing was my favourite), photography, I’ve always loved learning so I was top of the class at school, on the weekend going to rock and emo gigs or shopping with friends. I had to give up all my hobbies as soon as I got ill because I didn’t have the energy for both hobbies and school. I got offered a place at university to study journalism and English, but by then I’d declined to the point that I was Severe, with my Mum having to give up work to become my carer. I had and still have dreams of becoming a journalist, yet I now struggle to read or write due to brain fog. Writing all the symptoms I have could fill up a notebook but here is a snapshot of the ones I struggle most with:

  • Bone-crushing fatigue, as if I’ve ran a marathon, have a hangover and have a bad case of covid all at once
  • Severe pain only slightly relieved by a fentanyl patch, the strongest prescribable painkiller
  • Light, noise and smell sensitivity
  • With the cross-over of PoTS, I experience fainting, dizziness, unable to regulate temperature, high heart rate and low blood pressure
  • A whole host of sleep problems
  • Constant nausea which meant for several years I was severely underweight
  • Cognitive problems – brain fog, poor concentration, a struggle to find words and speech paralysis
  • Post-exertional malaise – which is a worsening of symptoms following even minor activity (a recent example for me is coming downstairs for half an hour to watch the coronation)
  • In the past I have had stroke-like episodes and paralysis

A 2015 study comparing the quality of life in 20 conditions showed that M.E had the lowest quality of life out of all compared illnesses, which included 4 types of cancer (lung, breast, prostate, colon), stroke and chronic kidney failure.

The world health organisation has classified M.E as a neurological disease since 1969, but public understanding is still very limited and often completely misinformed. When you get into Severe M.E things are even worse. Not long after being diagnosed I had a friend say to me ‘I wish I could stay at home all day like you, I could watch TV and stay in my pyjamas’. I’m not alone in being told this. But when people say this they’re thinking ‘I wish I could have my normal life and be able to have a break sometimes and stay at home’, they’re not realising being ill and mostly bedbound is my life, not something I could choose to do when I want to. These types of comments and misconceptions are even harder to hear because it’s the opposite of what most people with M.E’s personality is. There are some common personality traits seen in M.E patients – perfectionism, highly driven, motivated, ‘type A’, so the reality is that if we weren’t ill we have busy lives, as we had pre-illness.

A big issue and something I’d like to focus on is having a question mark over my future. This is the same for everyone with Severe M.E and to a lesser extent mild & moderate M.E. I find that the younger the person became ill the more difficult it is to accept this reality of uncertainty. The younger you become ill, the less you’ve been able to achieve and experience in life and the fewer milestones you’ve reached.

For the healthy people reading this, try and remember a period where you felt really ill, maybe you had flu or covid. Now remember how horrific you felt and you needed help looking after. Now imagine that is your life forever.

I wish for all the big things – to be able to dance & act again, to get a degree, to get a job, to travel, to drive, to move out and have a relationship, but I wish for the little things too. Here’s a smidgen of the things that seem small to most, that I wish I could do both now and in future, and don’t know if I’ll ever be able to do.

I wish I could:

  • Have a shower independently and when I want instead of only being able to have a shower every 8 weeks and my mum having to be in with me. The rest of the time, I have bed baths from my Mum
  • Go into the kitchen and grab a glass of water or a packet of crisps instead of having to have all my food and drinks brought to me
  • Go to the hairdressers and be blonde again with a nice cut instead of the hairdresser coming to my house every 3 months and getting a dry cut, in a style that doesn’t matter that I’m lay on it permanently
  • Read a physical book instead of only being able to listen to a small section of an audiobook and then having to relisten to the same serious days later, because I’ve forgotten what was said
  • Sit up all day instead of having to be lay flat 95% of the day
  • Be able to leave the house and go to a café, go on a country walk or visit a museum instead of only being able to leave the house for something not appointment related twice a year, for less than an hour a time, pushed in my reclining wheelchair
  • Visit my grandma instead of Skyping her
  • Go to the Cinema instead of watching a film on my iPad over 3 sittings at home
  • Shave my own legs instead of my mum shaving them for me in bed
  • Take my Mum out for a meal on Mother’s Day and my Dad for a drink on Father’s Day instead of it just being like a normal day where they have to care for me
  • Have real life friends and go out and do things with them instead of only having online friends and not being well enough to go out

Before I got ill I had not a minute, I was forever on the go. I never thought my life would end up like this. I was just an independent, passionate, driven 15 year old getting on in the world. I’m now a bedbound, extremely poorly 27 year old, who’s lost the last 12 years and who knows how many more. I’m not alone, in the UK 250,000 people have M.E, with 25% of us having it at a Severe level.



Blue Sunday

14th May was this year’s Blue Sunday, The Tea Party For ME. Thanks to the creator Anna Redshaw the ME community, their family, friends and allies came together and raised an incredible amount of money for ME charities.

We joined in by enjoying some personalised vanilla and white chocolate macarons.

A massive thank you to everyone who kindly chose to support Smile For ME with Blue Sunday. From The Tea Party for ME to the different fundraising events people held in honor of Blue Sunday, all the generous donations will make a big difference to us. An amazing £2,342.22 was raised for Smile For ME which will enable us to continue sending Smiles so we can’t thank you enough.

A raffle for ME

Thank you Joanna Baxter, amountaintoclimbform.e, for holding a raffle for ME which supported three charities, one being Smile For ME. The wonderful prizes were a celebration of the talent that is in the ME community and shared alongside were stories of some of the contributors. Thank you to Joanna, everyone who donated prizes and everyone who bought a raffle ticket. An amazing £1,500 was raised and split between the three charities so a brilliant £500 was added to Smile For ME’s Blue Sunday total.

Cosy Gamer Lo’s Charity Streams

Cosy Gamer Lo supported us by streaming on YouTube throughout May. Thank you Louise for choosing to support us and for your kind donation of £104.09 which was added to Smile For ME’s Blue Sunday total.

Louise’s final ME Awareness Charity Stream in support of Smile For ME is today, 31st May, 7pm BST. Watch her stream to support: Cosy Gamer Lo.

‘Be Kind’ charity print

‘Be Kind’ ME Awareness charity print by Alex Flower.

Designed by Alex and intricately engraved using traditional tools onto endgrain Lemonwood. Each print is then hand printed by Alex directly from the wooden block. Printed using a highly pigmented oil based black ink on beautiful, sustainably handmade warm white 170gsm Japanese Bamboo paper. The printed area measures 3.2×3.2 inches secured to a 6×6 inch mount, and will fit into a 6×6 inch frame. £10 from each print sold goes to Smile For ME.

Order a print:

Thank you Alex for kindly choosing to support us with your talent.

Pawsome raffle

Clover the cockapoo and their human Becca held a ME charity raffle with some pawsome prizes. Thank you Becca and everyone who got involved. A wonderful £110 was raised and split between two charities so £55 is on it’s way to Smile For ME.

Paracord keyring

Handmade paracord ME awareness ribbon keyring by New Forrest Paracord. Thank you Jude for kindly supporting us with your skills with knots learnt at Sea Scouts.

The keyrings are made using blue 550 paracord and a 25mm steel split ring. The finished size is approx 9cm high by 4.5cm wide. 10% of sales is donated to Smile For ME.

Available to buy: 

Bake 4 MECFS

There is still time to enter Bake4MECFS’s The Great Outer Space Bake Off. Everyone is welcome to get involved, you don’t have to be an ME sufferer or carer to join in.

Step 1 Donate

Step 2 Bake

Step 3 Tag/email/connect

Your entries will be judged by celebrity judges Jennie Jacques, Alyssa Carson, The Baking Explorer and Juliet Sear. Star bakers will be announced and space themed prizes can be won. 

For more information check out Bake4MECFS:

Donate to Smile For ME:

Thank you to all those who generously chose to support us with your coronation bakes and now space themed bakes. Thank you Jennie for choosing Smile For ME to be one of the charities Bake4MECFS supports.


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 this month. From the supportive messages to the generous donations, your kindness has meant a lot. We would not be able to do what we do without your generosity so we can’t thank you enough.


Thank you for taking the time to read our newsletter.

Smile For ME