March 2025
Hello and welcome to March’s newsletter. Hope you have had the best month possible.
Nominate
Nominations for Merryn’s Smile Day 2025 are open until 10th April. You can nominate a Severe or Very Severe ME sufferer for a special Smile in memory of Merryn Crofts by completing our nomination form. 
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 notebooks, colouring pencils and pens, stickers, book, disco ball planter, nail polish set, skincare and make up set, mug, water bottle, socks, gloves, blanket, cuddly toys, craft set 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 slogan ‘I’m so proud of you’ polaroid donated by Hannah. Thank you Hannah for your kind support. 
“Thank you for my daughters Smile package. They were beautifully presented and so carefully chosen for her. They definitely made her Smile. Thanks again”
Share a story
This month’s share a story is by There For ME. There For ME is a campaign, founded by Karen and Emma two carers for partners with very severe ME/Long Covid, calling for an NHS that’s there for people with ME and Long Covid.
Karen Hargrave recently shared on Substack:
Having ME or Long Covid, or caring for someone who does, can be a lonely experience. People with ME and Long Covid are all too familiar with the lack of understanding and recognition of these conditions across society, as well as the stigma that comes with them. That’s why allies matter.
One of our goals at #ThereForME is to build a coalition of allies calling for change. People with ME and Long Covid, and their carers, are at the heart of our campaign. But we need an army of allies standing beside us.
This week we’re celebrating some of the work done lately by our allies, all the way from clinicians to parliamentarians.
#FundThePlan: Ally Edition
We’ve been extremely moved by the number of people who have shared videos on social media for our #FundThePlan campaign since we launched it a few weeks ago. For anyone catching up, people with ME across the UK (and in some cases, their carers) have been calling on Wes Streeting and Ashley Dalton to commit funding to the new Delivery Plan for ME. We’ve collected a thread of some of the videos we’ve spotted over on Twitter/X.
Since our last update, we launched a #FundThePlan Ally Edition, which prompted a new wave of videos from allies including Lib Dem MP Tessa Munt, #ThereForME Ambassador Dr Binita Kane, Consultant Cardiologist Dr Rae Duncan and our friends at Long Covid Advocacy, Action for ME and Physios for ME. A huge thank you to all of the allies who have participated so far! And for those who haven’t yet had the time to share a video – the campaign continues and there’s no time like the present to get involved.
The next stage of #FundThePlan & how you can help
A special shoutout to ally of the week Pete Chinn, who gave us a hand with some pro bono video editing. Thanks to Pete’s help, we’re very excited to be launching a new official #FundThePlan video, which you can watch below. The video brings together some of the snippets shared on social media to tell a powerful story about the need for change.
We’d love to get our new video out to a wider audience, so please help us in sharing it far and wide! Whether it’s your MP, family and friends, or local media, you can help us get the message out to a whole new audience of potential allies.
We’ll be doing what we can to generate some media interest in the campaign with our new video. If you’ve made a #FundThePlan video and would be interested in talking to the media about it you can register your interest here.
Allies in parliament
We’ve also been pleased to see our allies in parliament working hard to scrutinise government approaches. In the past two weeks we’ve counted nine written questions raised in parliament on ME and Long Covid, with many focused on the Delivery Plan for ME. These questions have covered everything from whether the Delivery Plan will be applied by devolved governments, to whether the government is considering steps to improve care for infection-associated conditions as part of plans to bolster pandemic preparedness.
While plenty of stock government lines have been repeated across their responses, we’ve been doing what we can to read between the lines. Here’s five things we’ve learned:
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Publication of the Delivery Plan for ME is now slated for “the coming months” rather than a strict end of March deadline. While this will disappoint many, we hope that a short delay could help to facilitate a stronger plan backed by the right resources.
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There is some recognition of failures in care for people with ME but these are not yet understood as systemic. In response to a question asking if the government would apologise to people with ME for their historic treatment, new health minister Ashley Dalton responded that she recognised that “care for people with ME/CFS has varied widely, and in the worst cases has left some people feeling that their illness is not recognised by the health and care system”.
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The government has some understanding of what is needed but has not yet committing to funding it. In the same response Ashley Dalton explained that “we know that more research, better services and a better understanding of the condition all have the potential to make a huge difference to the quality of life of people with ME/CFS”. A good reason to #FundThePlan then.
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The Delivery Plan for ME will cover England only. Wendy Chamberlain posed a question on whether the Delivery Plan for ME will establish a common UK-wide approach. The response clarified that the Delivery Plan will cover England only, but that DHSC is working with devolved administrations to share “policy development and learning”.
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NHS England has completed a stocktake of ME and Long Covid services – but this won’t be published. Questions from Jo Platt and Will Forster revealed that NHS England’s recent stocktake of Long Covid and ME services has been presented to executive NHS England board members, but that it is considered an internal exercise that won’t be published.
Jo Platt, chair of the APPGs on ME and Long Covid, also used recent International Women’s Day as an opportunity to highlight significant gender disparities in the impact of these chronic illnesses, calling for a debate on the topic. While the request wasn’t taken up in the immediate term, Leader of the House of Commons Lucy Powell expressed that this would make a “very popular debate in future”. Last week, Jo also chaired the latest meeting of the APPG on ME, where members discussed the new Delivery Plan with DHSC officials (minutes here).
So – across the board our allies have been keeping busy. A big #ThereForME thank you to everyone who has been getting involved to support a better future for people with ME and Long Covid. It means a lot to see allies out there fighting our corner. Here’s to many more joining the campaign in future!
Website: www.thereforme.uk
Facebook: ThereForME
Twitter/X: @ThereForME_UK
Instagram: @ThereForME.UK
Bsky: @thereforme.bsky.social
Disclaimer: We are sharing this story to help raise awareness of ME and the support it receives. While this month’s story has a political aspect, our focus is solely on the underlying message, which remains the same regardless of political party. This is not a political post but an effort to highlight the realities of living with ME and the need for better support.
Social Media
We have expanded our social media platforms and we are now on TikTok and Bsky.
Follow Smile For ME on social media:
Facebook: @SmileForME
Instagram: @SmileForME
Twitter/X: @SmileForME_xx
TikTok: @SmileForMECharity
Bsky: @SmileForME.bsky.social
Fundraising
Ladies Night
A special thank you to Excelsior Lodge and Rob for inviting Smile For ME to their Ladies Night and fundraising for us. Wendy and Clive, Smile Trustees, represented along with Wendy’s husband and Clive’s son. An incredible £3,600 was raised for Smile For ME. Thank you Excelsior Lodge and Rob for your generosity as well as Rob’s wife’s employer and everyone involved in helping to make a big difference. The money will enable us to continue sending Smiles to people affected by ME so we can’t thank you enough for helping us to show ME sufferers and their carers they are thought of during a difficult time. 
Wotton Silver Band concert
Wotton Silver Band presents a concert with Round the Edge Community Choir on 26th April at 14:30 in aid of Smile For ME, ME Association and ME Research UK.
Helen shared:
The concert is at Renishaw’s Innovation Centre near Kingswood, Wotton Under Edge, Gloucestershire and will also be live streamed. A recording will be made available afterwards. We’re aiming to raise awareness and let M.E sufferers know they’re seen and not forgotten.
The band’s varied programme will include much loved music such as ‘Help’ by The Beatles, the beautiful ‘Benedictus’ from Karl Jenkins’ work ‘The Armed Man’, ‘The Bare Necessities’ from ‘The Jungle Book’ and ‘Climb Every Mountain of ‘The Sound of Music’ fame.
The choir will sing a variety of songs including ‘Moon River’, the song that Ken and I first sang with the choir when we joined together 15 years ago.
The three charities which will benefit from the event will be the ME Association, Smile for ME and ME Research UK.
Tickets are now on sale. They cost £5 each to be in the hall – while people can donate any amount they like to watch the live stream.
https://www.ticketsource.co.uk/wotton-silver-band or use the QR code on the poster.
Thank you Helen and everyone involved in the fundraising concert. We are grateful for you kindly choosing to support us and helping to make a difference. Wishing you all the best for your concert, we’re looking forward to watching online.
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
To everyone who has supported us this month thank you. It is thanks to your kindness and generosity we are able to continue sending Smiles to those affected by ME so we can’t thank you enough.
A special thank you to ME Global Chronicle and Rob. They publish an international newsletter with ME news from all over the world and have kindly been including Smile For ME in their updates. You can view the ME Global Chronicle newsletters here. Smile For ME is unfortunately a UK only charity however we are really grateful for the support from different countries and the kindness we’ve been shown.