#ThereForME’s first birthday

We had a busy day yesterday at #ThereForME HQ responding to the Delivery Plan publication. We’ll be back with much more on the Plan next week (for now, here’s some of Karen’s initial thoughts). But before diving back into the Delivery Plan grind, we’ve got a special post today marking a year since we launched #ThereForME.

We didn’t have many expectations when we founded #ThereForME just a year ago. But it’s safe to say it’s been a pretty wild journey thus far. What started as a WhatsApp chat between Karen and Emma grew into many more chats, and before long became a fully fledged campaign to bring about a transformation in care for people with ME and Long Covid.

It’s been incredible to see #ThereForME take off and we’re beyond grateful to everyone who has played a role. Behind our #ThereForME HQ team is a gang of volunteers, who have helped with everything from parliamentary outreach and drafting press releases, to media training and Substack editing.

We’re taking a moment today to say a huge thank you to everyone who has helped along the way – and to all of you, our Substack readers, for the endless support and encouragement.

Taking stock of progress

The past year has been a flurry of activity but there’s been some strategy behind it, too. Transformative policy change doesn’t happen overnight. Our campaign team thinks big – because we think people with ME and Long Covid deserve nothing less – and we’re nowhere close yet to achieving all our ambitions. But what we think we have achieved is a contribution towards the foundations for future change.

Here’s some of the progress over the past year in the three areas where we’ve tried to make an impact.

Building a coalition

We’re a small team and we can’t do it all. We believe that change for people with ME and Long Covid will be the result of a diverse coalition calling for action from many directions.

• We’ve been working closely with 23 other organisations and initiatives supporting people with ME and Long Covid to strengthen our collective voice. All of the organisations and initiatives supporting the campaign are part of a steering group which meets every few months. Joint activities have included a letter to the Health Select Committee and a joint statement for World ME Day. Our steering group was also treated to a public affairs masterclass (courtesy of Karen’s former colleagues).

  

• One of our first campaign activities was a very, very long open letter to the new Labour government, signed by 2,624 patients and carers.

• Healthcare workers also got in on the act. Led by #ThereForME Ambassador Dr Binita Kane, we supported a letter to Health Secretary Wes Streeting that was signed by 280 healthcare workers, expressing concerns on World Patient Safety Day.

• Our inaugural #ThereForME Advent Calendar brought together high profile supporters from across media, politics and entertainment. From Alastair Campbell to Krishnan Guru-Murthy, our #ThereForME celebs shared Christmas messages of support and solidarity with the community.

  

• Supported by the ever wonderful Jonah Weisz, we’ve made inroads in parliament with MPs across the house. Over the past year we’ve worked with 10 MPs and peers across the three largest parties to support the submission of 24 written questions on ME and Long Covid.

• We’ve seen particular traction with the Liberal Democrats and worked with the indefatigable Tessa Munt to bring together support across the party. This work came to the fore recently, with all 72 Lib Dem MPs signing a letter sent to Wes Streeting calling for funding for the Delivery Plan for ME.

Shifting narratives

We believe that meaningful change requires a shift in long-held public and policy narratives around ME – and more recently, Long Covid – that have for many decades stifled political engagement and held back progress.

We want to see a shift towards narratives that emphasise the severity of the condition (particularly for those worst affected), the total lack of NHS care and the case for progress. While narratives (and the perceptions they influence) can be notoriously difficult to shift, we’ve been chipping away at them over the past year.

• #ThereForME has been featured across a wide range of media outlets: the Times, Observer, Guardian, LBC, Channel 4 News, Sky News, BBC (Breakfast, Spotlight and Look North) and Radio 4 (Today, World at One and World Tonight).

• Throughout this coverage we’ve tried wherever possible to centre the experience of severely affected patients. Karen and Emma have shared their partners’ stories and we’ve supported others who are severely affected themselves or caring for loved ones to speak out (a shoutout to Rosie, Nick and the other Karen!).

• We’ve also worked hard to communicate the relationship between ME and Long Covid, both in our media appearances and in behind-the-scenes conversations with journalists. As Oonagh told BBC Breakfast last year: ‘As someone with Long Covid, I feel very strongly that if we had done more to understand what is happening in people with ME we would be in a much better place now to deal with all these people who have Long Covid.’

• We’ve also focused on shifting the conversation towards an evidence-based policy discussion. Earlier this year we worked with our friends at CrunchME on a UK ecosystem report (so far, the interim version is available) to better understand the state of play for UK ME and Long Covid research and care.

Bringing lived experience to the heart of policymaking

Finally, #ThereForME is a patient- and carer-led campaign and we believe that the best policymaking is built on lived experience. It’s essential to get lived experience in front of people with the power to influence policy and practice.

Here’s how we’ve been making a start.

• Our first campaign activity one year ago was a survey. This fed into a #ThereForME policy brief, which we’ve shared with MPs, the Department of Health and Social Care and NHS representatives.

• Our Substack – which now has around 1,600 subscribers – has featured regular guest posts from people affected by ME and Long Covid. Our top posts from the past year were Oonagh’s ‘The importance of understanding rest’ (her reflections on rest as a former athlete), Karen Galpin’s ‘This is not about not trying hard enough’ (a moving account of caring for her daughter Sophia) and our World Patient Safety Day letter.

  

• We’ve shared briefings with parliamentarians, including on issues affecting carers for people with Very Severe ME and the Delivery Plan for ME.

• Throughout our engagement on the Delivery Plan for ME – including representation on the Plan’s Task and Finish group – we’ve worked to centre lived experience. This included a blog series that shared our recommendations and our readers’ priorities, as well as the #FundThePlan campaign (which saw a wave of videos on social media from the community and allies).

• We worked with Patient Safety Learning on a blog series focused on the accessibility of NHS care for people with ME and Long Covid. The series was inspired by posts we’d seen on social media flagging issues accessing care beyond specialist ME/Long Covid services. We received a huge response to our callout for community experiences, which our colleagues at Patient Safety Learning summarised.

• We worked with Long Covid Support, Action for ME and ME Local Network on a survey that gathered experiences for a briefing about the devastating impact that proposed cuts to PIP were likely to have for people with ME and Long Covid. The results from the survey were presented to Disability Minister Stephen Timms and shared with the All-Party Parliamentary Groups on ME and Long Covid.

And into Year 2!

So there it is: Year 1 of #ThereForME wrapped. While there’s still a long road ahead of us, we’re taking a moment to feel satisfied at a year well spent.

In our second year, we’ll be holding the government to account on its promises in the Final Delivery Plan for ME and pushing for greater urgency, prioritisation and funding moving forwards.

Got any other ideas for what you’d like to see from us in Year 2? As ever, our suggestion box is open.

We’ll be taking some time off the Substack in August to clear our heads before picking up the campaign again in September.

The biggest thanks to everyone who has followed our journey so far. We’ll see you next week for a Delivery Plan themed final post before our break.