A recent study highlighted that the clinical presentation of long COVID is heterogenous (highly varied), spanning multiple organ systems, and in some cases strongly resembles ME/CFS. This overlap is not surprising, as many people with long COVID meet diagnostic criteria for ME/CFS, and the two diagnoses can co-exist, since both are currently symptom-based. “With no […]
Research by Professor Jason and colleagues has found that the way questions are asked in ME/CFS research can influence the responses given by participants. The team concluded that these altered responses to study questions may unintentionally reinforce erroneous assumptions that the ME/CFS is psychological in nature (psychosomatic). The study, which included 2,248 people with […]
Is it ME, or CFS, or ME/CFS? Unfortunately, there can be confusion over what to call the disease because so many names have been used over the years. In common with many healthcare systems, healthcare professionals and researchers, as well as other charities, ME Research UK uses the term ME/CFS. This is because it causes […]
The NICE 2021 guideline for ME/CFS outlines the criteria necessary for diagnosing the disease. Officially produced for use in England, it was formally endorsed in Northern Ireland in 2022, and in 2025 the Scottish Government announced that this guideline would serve as “the default clinical guidance on ME/CFS” in Scotland. Additionally, in Wales, there is […]
Key points: Background The majority of people with ME/CFS report an infectious illnesses before the onset of the disease, and a survey by the European ME Alliance, found that 58% of respondents associated the onset of their ME/CFS with an “infectious disease”. Approximately 30% of the ME/CFS cases associated with an infection are thought to […]
Second place in ME Research UK’s Founders’ Science Writing Award went to Krista Clarke, who is a postdoctoral research fellow at the University of Surrey. Here is Krista’s entry on the development of quantitative diagnostic biomarkers for ME/CFS. The future of ME/CFS research lies in the development of quantitative diagnostic biomarkers for ME/CFS. A biomarker […]
Estimates of the number of people (prevalence) with ME/CFS are based largely on those who have the code G93.3 for “post-viral fatigue”, which includes “benign myalgic encephalomyelitis”, recorded in their medical notes. Unfortunately, there are several limitations of using this code to estimate the prevalence of ME/CFS, including: According to the authors of a […]
ME Research UK supports calls for creation of an internationally recognised and operationalised research criteria for ME. In doing so, it joins leading researchers, clinicians, fellow charities, patients, advocates, and supporters from across the globe. As pointed out by the proposal an international effort to create consensus on the criteria and methods for selecting cases […]
World Sleep Day, an annual event organised by the World Sleep Society, aims to raise awareness of sleep-related issues and promote better management of sleep disorders. This year’s theme, “Make Sleep Health a Priority,” highlights the importance of prioritising sleep for overall wellbeing. For individuals with ME/CFS, sleep disturbances are a core feature of the […]
In 2015, the Institute of Medicine (IOM), now the National Academy of Medicine (NAM), published clinical criteria for diagnosing ME/CFS. According to the committee responsible, these criteria “focus more on the central symptoms of this disease than many other definitions” yet “are quite similar to the Canadian Consensus Criteria (CCC).” The committee also acknowledged that […]
