During 2024/25, the charity continued its role as an independent, science-centred provider of high-quality information and education for key decision-makers, healthcare professionals and those affected directly or indirectly by ME/CFS. In addition to the capacity to provide speakers for external events – to discuss ME Research UK’s role, its achievements and to provide insight into current research and the research landscape for ME/CFS – ME Research UK also produces printed literature (leaflets and Breakthrough magazine) and embraces the opportunities afforded by new means of communication to remain relevant and at the forefront of research funding.
Our Breakthrough magazine is provided free of charge to all who request it and is normally dispatched on a biannual basis. in both hard and electronic form. The magazine not only informs the reader of the charity’s newly funded research but also describes and interprets the results of ME Research UK projects.
Breakthrough also reports non-ME Research UK published studies that are presented in a form which aims to ensure that readers have a holistic perspective of worldwide research and of findings which may be relevant to them. The magazine is also available online ensuring as wide a readership as possible without any barriers to access. It is often cited as being especially useful to people with ME/CFS when speaking to GPs, nurses and other healthcare professionals about their symptoms. To expand its breadth and bring a new voice to our communications, the Trustees contracted with Cort Johnston, the highly regarded writer and creator of the influential Health Rising blog, to contribute articles to Breakthrough and the charity’s website. The international view and research sectoral review adds significantly to the scope of ME Research UK’s output.
Social Media
- Our Facebook page (MEResearchUK) strives to balance postings relating to fundraising activities of our active supporters with a more scientific focus with summaries of the most important worldwide research into ME/CFS and news of ME Research UK funded projects.
- Since its launch in July 2012, our Facebook page has amassed 20,930 followers – an increase of 46% over the charity year and is viewed regularly worldwide. It has steadily increased the audience for postings, created a community of regular commentators and provides platform from which we can connect to supporters both old and new. In fact, over the year, there were over 153,000 content interactions – an increase of 156% year-on-year.
- ME Research UK’s active X (Twitter) account further drives the successful dissemination of our research news and it will act as an additional avenue to engage more fully with potential donors and create a new community of supporters.
- 5,603 followers represents an increase of 6.7% over the last charity year.
- In August 2023, the charity launched an ME Research UK – Researcher Zone X/twitter account to cater for the distinct needs of researchers. This feed provides links to new research, funding opportunities, meetings, conferences and the like as charity seeks to raise its profile amongst researchers at all stages in their careers. At year end, it had 282 followers representing an increase of 22.1%
- ME Research UK’s Instagram account now has 3,286 followers representing an increase of 132% over 2023/2024. Posts were viewed over 435,000 times with a 100% increase in content interactions to 22,200.
- The charity’s LinkedIn account further widened the scope of distribution of ME Research UK’s output. In the last year it has amassed 262 followers as opposed to 20 in previous year.
Awareness Raising
25th Anniversary
2025 marked a milestone in the history of ME Research UK, as this year the charity marked 25 years since its foundation. As an organisation, our dearest wish is that sustained major funding into ME/CFS becomes available, leading to a cure or effective treatment, and ME Research UK could withdraw.
ME Research UK did not celebrate 25 years of work but rather marked the commitment of researchers and supporters and what they have achieved. The charity’s original founding document was signed on 20th January 2000, and The ME Research Group for Education and Support (MERGE) was born.
During the year –
- The contribution of ME Research UK to ME research was recognised by the Scottish Parliament via a Motion for International ME Awareness Day which was supported by 70 of the 104 MSPs eligible to sign (an unprecedented proportion) at which Holyrood ‘commends ME Research UK on the occasion of 25 years since its foundation; notes that the charity is dedicated to commissioning and funding biomedical research into the causes, consequences and treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/ CFS); believes that the disease, which affects at least 20,000 people in Scotland, is often misunderstood, mis-diagnosed and under-diagnosed, and is grievously under-researched; understands that the Perth-based charity has invested over £4.5 million in research with 68 research projects globally, four PhD-level projects and a Fellowship; further understands that, in terms of projects, the Perth-based charity is the largest funder of ME/ CFS outwith North America, that it presently funds projects in Australia, France, Germany, the Netherlands, Sweden, USA and the UK, and is funded entirely by individual donations, and extends its thanks for the work of ME Research UK in informing, influencing and investing in ME research globally’.
- A Civic Reception was granted to the charity by the Provost of Perth and Kinross Provost Xander McDade and Perth and Kinross Council on 12th May at the Civic Hall, Perth. During the event the principal speakers, Deputy Lieutenant Charlie Gallagher, the Provost of Perth and Kinross, and Councilor Michelle Frampton spoke eloquently and with deep understanding of ME, enlightened by their familial experiences of the disease. Deputy Lieutenant Gallagher read from a note from Stephen Leckie, Lord-Lieutenant of Perth and Kinross, which narrated many congratulations on the work the charity had done over the past quarter century and that “Everyone in the county is very proud …” of the achievements of a small, local charity.
- ME Research UK sponsored the poster competition at the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis October 2025 virtual conference. The competition challenged early career researchers to face the issues inherent in communicating research data in a concise and attractive form for a defined audience. Two awards were funded to recognise different facets of a successful science poster with the aim that the process of designing and writing the poster would provide a real-life challenge to those at the beginning of their research careers.
- In consistence of the fact that 13th July 2025 marked the 70th anniversary of the outbreak of an disease which was, in a 1956 piece in The Lancet, labelled ‘benign myalgic encephalomyelitis’, ME Research UK initiated an annual ME Research Day which, in coming years, will recognize and mark the work, challenges, and success of ME researchers globally. The Research Day will be an annual reminder of ME Research UK.
- Additional efforts were placed into marking International ME Awareness Day with the charity arranging for all four UK nations and, indeed, all four nation’s capitals, to be united to mark 12th May with the Northern Ireland Assembly’s Parliament Buildings, Belfast City Hall, Gateshead Millennium Bridge, Cardiff Castle, Edinburgh, and Aberdeen Council’s HQ illuminated in blue in honour of those affected by ME and to raise awareness of the disease. Perth City also joined and, of particular note, the logo of ME Research UK revolved around London’s BT Tower (formerly the Post Office Tower) in honour of the 25th Anniversary and 12th May events.
- Highlighting ME Research UK’s anniversary, the charity was an active participant at a meeting organised by Hope4ME & Fibromyalgia NI at Northern Ireland’s Parliament Buildings. The meeting being attended by MLAs, political representatives, healthcare workers, academics, & educators and the audience heard the Minister of Health Mike Nisbett MLA pledge his determination to help those affected by M.E. Northern Ireland.
