Campaign Update #19: Getting coordinated
It feels like it’s been a while since our last update! Between the campaign, our busy lives, health and caring responsibilities - it’s been all go at #ThereForME HQ. We’re taking a moment today to sit back, take stock and share some highlights from a busy few weeks.
This week we’re thinking about coordination. We think change comes from a coalition of allies pushing from various directions. Since we founded the campaign it’s been remarkable seeing how this coalition has grown.
Here’s some of the positive signs of progress we’ve noticed over the past few weeks.
World ME Day Joint Statement
Last Monday we marked World ME Day with a joint statement from 28 organisations and smaller initiatives supporting people with ME and Long Covid. When we first launched our campaign, less than a year ago, 15 organisations supported our initial policy brief. It’s been amazing to see this network almost doubling in size (with room for plenty more!).
We’ve been particularly pleased to make connections with local ME groups from across the country. As we’ve explored on our Substack, local support groups can change lives. They also represent an incredibly important base for locally-led advocacy, driving change from the ground up.
Our joint statement for World ME Day highlighted the dire situation facing people with ME across the UK. With the new Delivery Plan for ME due to be published in June, it called on the government to provide sufficient funding (or in other words, to #FundThePlan).
The Lib Dems are #ThereForME
We’ve also been noticing a growing coalition for change in parliament, with the Lib Dems leading the way so far. We’ve been wondering for a while what could be done to bring together the support we’ve noticed from a remarkable number of Lib Dem MPs in this parliament, including many frontbenchers. A few conversations later, the allies assembled!
Ahead of World ME Day, #ThereForME ally and formidable politician Tessa Munt penned a letter to Health Secretary Wes Streeting, signed by all 72 Lib Dem MPs, calling on the government to provide funding for the Delivery Plan for ME.
The letter explained:
“While this government has said that “in the worst cases” NHS care for ME/CFS has “left some people feeling that their illness is not recognised”, we believe this is a significant understatement. A 2023 public consultation made clear how the health system is failing people with ME with inappropriate attitudes, a lack of compassion, inaccessible care and poor implementation of NICE guidance. A recent Prevention of Future Deaths report termed care for the most severely affected ‘non-existent’.
[…]
The Delivery Plan for ME/CFS is an opportunity to recognise the depth of previous failings and demonstrate this government’s commitment to finding solutions. The Final Delivery Plan aims to boost research, improve attitudes and education, and better the lives of people with ME. None of these admirable goals will be achieved without ring-fenced funding.”
It was great to see Lib Dem MPs sharing their support for the letter on social media:
“On #WorldMEDay I've joined Lib Dem colleagues in writing to the Health Secretary about the need to invest in the Final Delivery Plan for ME/CFS. People with ME have one of the lowest qualities of life of any condition but have faced decades of insufficient care. This must change.” - Tim Farron (former LibDem leader)
“Today is #WorldMEDay. ME is a chronic, complex and often misunderstood condition that has a huge impact on patients. People with ME have been let down for decades - it's time for that to end.” - Helen Morgan (Health Spokesperson)
While awaiting a response from the government, Tessa Munt also took the opportunity to raise a question in parliament, encouraging the Secretary of State for Work and Pensions to work with colleagues in DHSC to fund ME research.
“Can I also ask that she works with her colleagues in the Department for Health and Social Care to make sure that there is research funding put aside so that those people who would love nothing more than to have a normal life and got to work can actually have the money to make sure they get better?” - Tessa Munt
We think we speak on behalf of the ME community when we say: thank you Tessa!
The APPGs on ME and Long Covid join forces
We’ve also been noticing growing support in parliament for people with ME and Long Covid across different political parties. Last week the APPGs on ME and Long Covid, both chaired by Labour MP Jo Platt, joined forces for a meeting focused on the welfare reforms and the current research landscape.
Stephen Timms MP, Minister for Social Security and Disability, attended the first half hour of the meeting. He was presented with a joint parliamentary briefing from Long Covid Support, #ThereForME, ME Local Groups Network (MELN) and Action for ME, based on findings from our recent community survey.
Drawing on powerful lived experience, the briefing makes a clear case against the government’s proposed PIP reforms, demonstrating that they will not achieve their goal of supporting people into work. Instead, we urge the government to fund the Delivery Plan, including investment in biomedical research to develop effective treatments for people who want to recover, return to work, and live full lives.
During the discussion, advocate extraordinaire Tessa Munt asked why the government was abandoning 1.3 million people and stressed the need for engagement with the Department of Health and Social Care (DHSC) to secure research funding. Stephen Timms acknowledged that she had made a compelling argument and agreed to speak to the DHSC.
The second half of the meeting turned to the science, with presentations from leading experts: Professor Chris Ponting, Professor Danny Altmann, Dr David Strain, and Dr Binita Kane (ambassador for #ThereForME). They shared the latest research findings on ME and Long Covid, and highlighted the significant knowledge and funding gaps that need urgent attention.
Binita spoke movingly about the long history of neglect surrounding ME, referencing Unheard by Rageshri Dhairyawan, and calling for a national strategy on infection-associated chronic conditions, alongside immediate care for those already affected. She dedicated her talk to Emma (not her real name), who in 2021 was a happy, healthy, active 14yr old . In 2025, she’s been bedbound for nearly 3 years, fed with a tube and cared for 24/7 by her parents. As Dr Kane concluded, “We cannot abandon them while we wait for the research to catch up.” We couldn’t agree more.
That’s all for now. We’ll see you next week!
Thank you so much for your perseverance, precise arguments and brilliant networking.
Great stuff. Thank you.