Funding studies and influencing the research agenda formed but two parts of ME Research UK’s work in 2022.
During the year, 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 discussing ME Research UK’s role, its achievements and providing 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 social media to remain relevant and at the forefront of research funding.
A particular focus for education is during ME Awareness Week. This year ME Research UK – via its website, Facebook and Twitter accounts – concentrated on aspects of funded research investigating the primary symptoms of ME/CFS – e.g. muscle fatigue, sleep disturbance and post-exertional malaise – with infographics. These were interspersed with news of the Secretary of State’s Statement on ME/CFS, the results of the ME/CFS Priority Setting Partnership top 10 ten plus research priorities’ fundraising news, and media reports.
Reporting on ME Research UK-funded projects is central to our output. Placing complex findings in context and in a form that engages is key to informing our audiences. From Prof. Nijs & Prof. Godderis’s research to that of Dr Westermeir, and Dr Sepúlveda & Prof. Scheibenbogen, ME Research UK places research in context and highlights important findings.
This reporting covers not only specific research outcomes, but also themes such as a two-part report on the heart, blood vessels and autonomic nervous system and how they are involved in delivering oxygen and nutrients around the body, and what aspects may be abnormal in people with ME/CFS. The feature on cognitive function was particularly well received.
Havig skilled staff enables ME Research UK to highlight the outcomes from important conferences. During 2022 , ME Research UK attended and, where siutable, reported on the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) Conference, Edinburgh University’s ME Genetics Symposium, and a 4 day conference hosted by leading ME/CFS researcher Prof. Ron Davies.
The charity continued its association with Health Rising’s Cort Johnston who contributes an international perspective on ME with four articles per year – two for our website and two for our Breakthrough magazine.
Breakthrough magazine is provided free of charge to all who request it and is normally dispatched on a biannual basis in both paper 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, 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 often cited as being especially useful to people with ME/CFS when speaking to GPs, nurses and other healthcare professionals about their symptoms.
Our Facebook page strives to balance postings relating to fundraising activities of our active supporters with a more scientific focus, including summaries of the most important worldwide research into ME/CFS and news of ME Research UK-funded projects. In this way, those affected by ME/CFS can be kept abreast of recent developments.
ME Research UK’s active Twitter account further drives the successful dissemination of our research news, and it will act as a further avenue to engage more fully with potential donors and create a new community of supporters.
Information is power, as they say, but at ME Research UK informing is a key attribute of what we do.
