Firstly, Happy New Year! This coming year can’t be as bad as the past 5….can it?! I’m hopeful and will be working to make sure 2025 ends up being a positive year by seeing our work as building blocks.
I took a complete break over the festive and New Year period as last year was very much ‘nose to the grind stone’. For me, someone living with the disease Stripy Lightbulb CIC educates professionals about, it was an additionally exhausting year due to the exciting projects we created but also reacting to the nonsense that is so often published and subsequently spread about our illness and community. It has been exhausting to be in the thick of it.
However, the break has worked wonders. I was able to daydream and ponder what Stripy Lightbulb CIC could achieve in the year ahead, my imagination was able to run wild in between watching Christmas movies and eating gluten free mince pies (Tesco ‘luxury’ mince pies – not very nice – that’s my food review). I had so many new, fresh, and progressive ideas that could have been workable possibilities – it felt good to be back in a positive head space.
With Stripy Lightbulb CIC, my main focus will be to concentrate on building on the relationships and projects I started in 2024. As you will know, 2024 was our ‘Year of Inclusion’. Because of this, I proactively joined various collaborative groups around the UK. These groups are all working on different issues that relate to Myalgic Encephalomyelitis (M.E.) but M.E. wasn’t necessarily included in the conversation. For example, NHS Midwifery – M.E. is just one of the illnesses midwives will encounter in clinical practice but they may not know enough about M.E. to be able to support the patient adequately during childbirth. I personally know four women with M.E. who have given birth during my time as a campaigner since 2014, and all have said their childbirth experience was worsened due to the lack of knowledge about their M.E. Their M.E. was not considered by medical staff within their care and support. Stripy Lightbulb CIC is now part of a university collaborative group creating training for Midwifery students. M.E. is now part of this conversation to ensure energy-limiting chronic illnesses such as M.E. are considered by midwives in their clinical practice. This is an ongoing project.
This is just one example of the ‘inclusion’ achieved by us last year. Mission accomplished.
Building Blocks
As a long-standing M.E. campaigner I have a lot of ideas and want to solve every single issue encountered by people living with M.E. I am grateful to those in my community who message me privately to say (paraphrasing) ‘Thank you for your efforts but you have M.E. yourself. Please be careful – don’t do too much and make yourself deteriorate’. I have listened and that is, in part, why I am concentrating on existing projects and relationships this year.
Stripy Lightbulb CIC’s number one priority has always been, and remains, to educate as many professionals on M.E./C.F.S as possible with our online training courses. Our advocacy work in recent years has caused us to take our eye off the ball in terms of promoting our training to organisations and individuals. That will change in 2025 – we will be far more focused on our main business objective. Sales of courses mean enhanced professional practice, improving the lives of people living with M.E. through better understanding and knowledge on the disease, and also 50% of our surplus goes to M.E. research. Sales are a win win win! We have had everything in place since 2019, now we need to change our mentality to ‘Building blocks’ to make sure professionals sign up and learn. We aren’t improving the lives of people with M.E. if professionals are not signing up to our training. The online training courses are our first layer of blocks. Now we need to build on them -UPWARDS.
In addition to our main business objective, here are the existing projects Stripy Lightbulb CIC will be concentrating our efforts on this year:
- M.E. Friendly Charter. This Charter is ready to go in terms of being implemented. Our task now is to have conversations with every single regional health organisation around the UK to make sure this document is acknowledged, considered, and hopefully implemented. It is a living document as we have no doubt individual organisations may want to tweak it to fit their own particular wants and needs. Want to get involved? All information can be found here.
- BED for Severe M.E. 2024 marked the launch of this wonderfully positive and forward-thinking campaign to highlight those living with very severe/severe M.E. There are many different aspects to this annual campaign and we are hoping the community engages to make this bigger, brighter and more powerful this year and the years to come. Please get involved in this campaign. More information here.
- Cancer screening for people with M.E. This is a very new project that was just starting at the end of 2024. We want to work on improving the percentage of people living with M.E who have access to cancer screening. We will be creating a working group in January to ensure we are creating a project that is fit for purpose and patient-centred. Please get in touch if you would like to volunteer to contribute to this project. Email me, Sally, via [email protected].
- A training day in Hampshire. Following on from our success in Cardiff in 2023, we are now looking to hold a training day in our local region to build on the relationships built over the past 12 months. This will be an exciting step for us but is grant funding dependent.
In addition to this we will be participating in the many collaborative groups previously mentioned. Phew!
You may have noticed we do things a little bit differently at Stripy Lightbulb CIC. We collaborate with groups and organisations outside the M.E. bubble as we believe that will lead to social change. We very rarely encounter other M.E organisations but *Hello!* to the two small support groups we have bumped into during Zoom meetings with disability organisations, and to WAMES and ME SIG who participate in the same collaborative work in Wales. Keep up the hard, often thankless, and relentless work!
This will be our ‘Building blocks’ year as we will be building on what has gone before without being distracted by the nonsense that is often published about this illness and our community. Education is the only way we are going to tackle the misinformation over the longer term. I will be working hard to be less reactionary and more progressive in our work. Time and energy spent countering misinformation means I have less to spend on building blocks and progressive actions. Time for change.
Best wishes for 2025,
Sally Callow
Managing Director of Stripy Lightbulb CIC.
