The #ThereForME team have published the first version of their UK Ecosystem Report for ME and Long Covid, created in collaboration with CrunchME. This report maps out key stakeholders and initiatives across the UK, aiming to inform advocacy efforts, policymakers, and potential funders of research and care.
The report tracks active and future ME/CFS research projects within the UK. Following each overview slide like the one below, are detailed additional slides showing the technical nature of the work and interventions being trialled.
Following slides go in to show research projects for Long Covid within the UK, Clinics and Clinicians, Biotech resource, and forthcoming conferences.
Helen Pidd discusses what life is like during and after Long Covid. Emma Gore-Lloyd shares her continuing journey in search of a cure for her partner James, whilst Georgina tells her story of how she got better.
YouTube links are provided here when available as well as Spotify, as they don’t currently require a subscription to watch / listen. Listening via Spotify makes it easier to listen whilst doing something else on your browser or phone.
Vital Long Covid Clinics Closing Across the UK Despite Ongoing Need, New Research Warns
A study by Long Covid Support and Long Covid Kids has unveiled alarming gaps in Long Covid care, revealing that numerous specialist services across the UK are either shutting down or facing imminent closure. Despite NHS England confirming funding for Long Covid services through 2025/26, Freedom of Information (FOI) requests and direct communications with service providers indicate that many are already closing or operating under uncertainty.
This report explores the experiences of people with Long Covid in the UK in using NHS services. It views these experiences within the context of uncertainty around the future funding model from NHS England and the fragmented approaches to Long Covid care in the devolved nations. We use information from a number of sources to challenge the view that it is appropriate to de-prioritise specialist Long Covid services in the UK.
Who this report is for This report is intended for policymakers and government departments, including Department for Health and Social Care (DHSC), Department for Work and Pensions (DWP), Department for Education (DfE), the Health Select Committee, health secretaries, and the All-Party Parliamentary Group (APPG) on Long Covid. It is also relevant to National Health Service (NHS) health authorities such as NHS England, individual healthcare boards in
This is a long read, but you have everything here. The “Hidden demand” figure on page 47 says for the Derbyshire case study shows that less demand for services isn’t the reason the services are closing down.
The government is proposing making changes to the benefits system. This tool helps you write a response to their consultation. It is designed for disabled people and their families.
The government’s changes are complicated, so we’ve broken things down into four main proposals. Here’s how it works:
We’ll ask a question or two about each proposal and suggest some things to think about in your answer. You don’t have to respond to every question.
We’ll compile all your answers into one response.
Copy this response into an email to send to the Department of Work and Pensions.
This should take about 20 minutes to complete. While that might seem like a lot of time, it’s much more effective to take the time to write a consultation response that is tailored to you.
Harry Leeming introduces the Visible App and wearable armband
Harry Leeming introduces the Visible App monitoring and wearable armband, allowing daily symptom tracking, morning Heart Rate Variation measurement (even without the armband) and with the armband, continuous Heart Rate monitoring and Pace Point scoring.
Tessa Munt, officer of the APPG for ME, announced that 100% Liberal Democrat MPs have now signed a letter urging Wes Streeting and Ashley Dalton to back the ME/CFS Delivery Plan with the funding required to properly implement it.
Tessa Munt – “I’m so delighted that all 72 LibDem MPs signed this letter to @wesstreeting @AshleyDalton_MP asking the govt to back the ME/CFS Delivery Plan with the resources it deserves. May this be a huge encouragement to the ME community and the start of meaningful change. #WorldMEDay”
Dianna Cowern, also known as “The Physics Girl” after her massively successful YouTube channel, wants people to know about the disease ME/CFS. In May 2025, Dianna Cowern updates us on her journey and recovery following a Covid infection in Autumn of 2023. Dianna reveals that she’s made progress and beginning to be able to enjoy some limited activities. Whilst she is recovering, she parallels the continued severe suffering of her friend Tobias Schweikert who lives in Germany, reminding us that so much more needs to be done worldwide for those who continue to suffer, with no end in sight.
Kyle (Dianna’s Husband): “It’s been over two years of being sick essentially approaching two years of like bed bound her quality of life is unimaginably low right now still she can’t get out of bed she can’t clean herself she can’t take a shower she can’t…”
Derek Muller (Veritasium): “I think the thing that’s shocking to me as well is like this lack of ability to have anything really to occupy your mind right like it’s not like she can’t really read or audio books or movies.”
