Campaign update #12

What we’re looking forward to in 2025

Hello again friends of #ThereForME! It’s been a while since our last campaign update. In case you missed it, we were pretty busy all December with our #ThereForME advent calendar. Since then, we’ve been taking some much-needed time off at #ThereForME HQ.

As 2024 draws to a close, I’ve been taking some time to reflect. In many ways, it was a difficult year on a personal level. For my husband James, who I care for, it was another year of deterioration. This year he became fully bedbound and developed more difficulties with swallowing. Watching him suffering throughout this year was, as it always is, harrowing.

But there were also sparks of light amidst the darkness. Most importantly, finding new friends, community and a sense of purpose. It’s hard to believe that #ThereForME is only five months old. It’s been incredible seeing our campaign grow over the past year. Working with Emma and Oonagh (our HQ team) has been a constant delight, as has seeing our ambitious plans come to life.

We’re extremely grateful to all of the people who have supported the campaign behind the scenes. From our army of very talented Substack editors, to those who have bounced ideas around with us or helped us build connections where we’ve needed them. It feels like we’re only just getting started and we’re excited to see where we can take the campaign in the new year.

Here’s three things we’re looking forward to in 2025.

Building support for ME and Long Covid in parliament

One of the highlights of 2024 has been building up our base of support in parliament. We were delighted to see eight MPs from four major parties take part in our Christmas campaign, representing a cross-party coalition of support for people with ME and Long Covid. We’re looking forward to seeing what we can do with this coalition in 2025 to drive forward much-needed improvements in care and research.

While we haven’t yet heard back from the Health and Social Care committee in response to our joint letter calling for an inquiry, we’re looking forward to following up with the committee in the new year. We’ll also be working with Action for ME to share updates from the APPG on ME through our Substack and social media. So, plenty afoot in parliament and we’re looking forward to keeping you updated in 2025!

Getting strategic

We’re also looking forward to getting more strategic. I’m going to be completely honest: when Emma and I co-founded #ThereForME we didn’t know exactly what we wanted it to be. There’s been a lot of figuring things out as we go along. So far, it seems to have worked for us but we’ve been thinking a lot the past few months about what comes next.

We’re a small team with limited capacity and we’re acutely aware that we can’t do it all. In 2025 you’ll be hearing a lot from us about safe care and accelerating treatments, which are the two areas where we’ll be focusing our efforts. Our HQ team recently met for a brainstorm and spent time breaking down each of these areas, as well as where we see the barriers to progress.

Ideas in progress: a flipchart from our #ThereForME HQ brainstorming.

The level of change needed is immense and we want #ThereForME to be a catalyst, bringing together the people and expertise that’s needed to bring forward change that is far overdue. In 2024 we focused a lot on patient safety, which will always be at the heart of our campaign. We’re very excited that in 2025 we’ll be collaborating with friends at CrunchME to develop our focus on accelerating treatments.

As ever, if you have ideas for what we should be looking at or who we should be talking to, let us know.

Capturing community voices

Finally, we’re looking forward to hearing more from the community next year. We’re a patient- and carer-led campaign but we’re always aware that n=3 isn’t enough. We launched our campaign this year with a survey (which fed into a report), mapping experiences of care for ME and Long Covid against Labour’s plans for the NHS. Another highlight from this year was sharing your ideas for understanding ME and Long Covid through music, art, words and film.

As we head into 2025, we’ll be looking for new ways to capture ideas and experiences from the community. We’re hoping to platform more voices from the community through our Substack guest posts. We’re also exploring other ways to capture your voices, including through new partnerships. So watch this space.

Thank you for the support

It’s been a big year for us at #ThereForME HQ. A big thanks from the bottom of our hearts for all of your support along the way.

If the holidays have been a hard time for you, like they have for us, it’s time to breathe out. We can’t promise 2025 will be a better year but we can promise that we’ll be doing what we can in the new year to find some rays of hope. We’ll be taking a few more days off to recuperate, after which we’re looking forward to getting the campaign back into gear.

We’ll see you next week.