ThereForME is now a registered charity

What it means for our work, and how you can get involved

We’ve got news! ThereForME is now a registered charity.

Our work began on Substack, so it feels fitting that this is the first place we’re posting the news, directly to the supporters who have been with us throughout the journey.

If you’ve noticed we’ve been a little quieter than usual lately, it’s because we’ve been hard at work behind the scenes bringing the next phase of ThereForME to life.

Today we’re sharing why we’ve taken this step, what it means for our work and how you can get involved.

Why register as a charity?

When we founded ThereForME back in 2024 we had no idea what it would grow into. Ultimately, ThereForME started from a friendship and – beyond that – a shared experience of caring for partners with very severe ME, often with very little support or understanding. We were shocked by the systemic challenges faced by people with ME, and shared a belief that a better future was possible. In founding ThereForME, we resolved to bring the reality of ME directly to the people and institutions that have the power to change it.

ThereForME has grown far beyond its origins as an initiative run by a small number of volunteers. We’re incredibly proud of what we’ve achieved along the way: coverage across major news outlets, a Christmas campaign featuring famous faces from Sunetra Sarkar to Krishnan Guru-Murthy, and support in parliament from across the political spectrum, including a letter to the government signed by all 72 LibDem MPs. We have also developed the ThereForME Forum, offering a space for 24 peer organisations to coordinate and learn from each other and expert contributors on communications and advocacy.

Emma, Karen and Oonagh (our ThereForME HQ team).

We have big ambitions – and a proven track record – but we’ve reached the limits of what a volunteer effort can sustain. ThereForME has run for two years entirely on volunteer time. We have the skills, network and motivation to drive forward lasting change for people with ME, but it became clear that we needed to move ThereForME onto a more sustainable footing.

Registering as a charity is the natural next step. It positions us to fundraise at scale. It gives our supporters the assurance that comes with regulation and oversight. And it strengthens our work by bringing in a board of trustees with expertise across areas including communications, public affairs and charity governance (we’re excited to introduce them to you!). Together, these changes put us in a stronger position to build a world where healthcare, wider public services and society are truly there for people affected by ME.

We know there is a strong and active charity sector around ME, and we want our role to complement the work already being done. We’ll focus on where we can add distinct value: awareness-raising and advocacy centred on the lived experience of ME and grounded in professional expertise. We also hope to bring fresh approaches and new voices to the conversation, while contributing to a culture of quality and accountability across the sector.

How you can help

Now that we’re a charity, we’re happy to announce that ThereForME can now accept donations. If you are willing and able, you can donate online through one-off and regular contributions.

The early donations we receive will help us to cover start-up costs and to begin putting in place the paid staff time we need to sustain our day-to-day activities. Once those foundations are in place, we’ll be able to direct donations towards expanding specific areas of our work: for example, commissioning research on the experiences and needs of people affected by ME, convening events (such as policy roundtables or events in parliament), or running awareness campaigns.

We will never encourage anyone to give beyond their means, and there are many ways to support ThereForME besides donating. If you follow us here, you’ll be the first to hear about other ways to help, whether it’s sharing your experiences and perspectives, or telling family and friends about us.

Finally, we wanted to thank each and every one of our subscribers for being a part of the journey so far. The community is the beating heart of our work and, while we don’t always have the capacity to reply, we read every message and comment we receive. Your perspectives continually play a part in shaping our work.

When we founded ThereForME, we wrote about how we “shared a hope that one day the hell we are living through will be a distant memory”. We’re not there yet. But with this next step, we’re more determined than ever to help make that hope a reality.

People affected by ME and related conditions are too often failed by the systems meant to care for them, and rarely met with the understanding they deserve. We exist to change that: to bring the reality of ME directly to the people with the power to act. We’re delighted to be taking another step on that journey and so excited to see where we can take ThereForME next.

Let’s build a world that’s truly there for people with ME.

We’ll see you next time.