United Kingdom: ME Research UK (MERUK) News

ME Research UK:

ME Research UK's charity year ended on 31st October, and we want to take this opportunity to review what the last year has meant for us, focusing on our three key activities of Investing, Informing and Influencing. Thank you so much for your continued support, which allows us to continue this work, as we pursue our vision to end the suffering caused by ME/CFS.

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ME Research UK:

Researchers based at Cardiff University – alongside those with lived experience of ME/CFS have published two papers investigating how ME/CFS impacts quality of life – the degree to which an individual is healthy, comfortable, able to complete the tasks of daily living, and to enjoy life events.

Read about what the team found here: https://tinyurl.com/3wb4y9s8

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https://tinyurl.com/3wb4y9s8
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ME Research UK:

2025 marks a milestone in the history of ME Research UK, as this year the charity marks 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.

We're not celebrating 25 years of work, but marking the commitment of researchers and supporters and what they have achieved.

This year, through themed initiatives, the charity will raise the profile of the disease and highlight research efforts.

Read more: https://bit.ly/42dqtRu

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ME Research UK – February 2025 e-newsletter

Snippets
ME Research UK-funded research at Griffith University in Australia has found enlargement of the hippocampus in people with ME/CFS and in those with long COVID.
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Dr Krista Clarke and colleagues at the University of Surrey, along with members of the ME/CFS Biobank team at the London School of Hygiene and Tropical Medicine, have recently published a review looking at potential blood-based diagnostic markers for ME/CFS.
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we have looked at an update on EU research funding and on US recognition of International ME Awareness Day (12 May).
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We have also discussed recent news relating to the UK Government’s Delivery Plan for ME/CFS, including reports that the Plan will not be backed by any additional financial resources, and that the Government has rejected calls for a specific ME/CFS Research Centre of Excellence.
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researchers in Norway [looked] at how the income of people with ME/CFS changes over time. They considered that this may provide a rough indicator of disease course and severity over time.
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A new study by ME Research UK-funded researcher Dr Jarred Younger examined which characteristics – including self-reported “race” – are associated with receiving an ME/CFS diagnosis, and his findings suggest several mechanisms for the “racial disparities” they found, which further validates the proposition that a large number of those affected by ME/CFS are undiagnosed.
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The Brighton Marathon is one of the UK’s most iconic and scenic races. [...] ME Research UK has two guaranteed entries for the 6th April 2025 event which must be allocated by 13th March 2025. Please contact us if you are interested in taking part.
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You can shop online and raise money for the charity via Give as you Live – it’s free and easy to sign up and make a difference.
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14 March
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 disease. Whilst optimising sleep within the constraints of ME/CFS does not cure the disease, poor sleep quality significantly impacts quality of life.

Poor sleep and sleep disorders are major public health concerns, contributing to both individual and societal burdens. Short-term consequences include reduced attention, memory, and learning, whilst long-term effects increase the risk of conditions such as diabetes, weakened immunity, and cardiovascular disease.

Research highlights a correlation between poor sleep quality in ME/CFS correlates with poor quality of life. Despite evidence of sleep dysfunction in ME/CFS, research into its underlying causes remains limited. Many studies use the Fukuda criteria for chronic fatigue syndrome (CFS), which do not consider post-exertional malaise (PEM) – the cardinal feature of ME/CFS – as essential for diagnosis. Nevertheless, these studies provide a foundation for future research.

Some key research areas explored in relation to CFS, include –

  • Polysomnography (sleep studies): A considerable number of individuals meet criteria for sleep apnoea and periodic limb movement disorder.
  • Autonomic nervous system dysregulation: Reduced nocturnal heart rate variability may contribute to unrefreshing sleep.
  • Altered sleep architecture: Studies show reduced slow-wave sleep activity in CFS participants compared to healthy controls.
The NICE guidelines recommend personalised sleep management for ME/CFS, including assessing potential underlying sleep disorders. However, due to limited evidence and lack of consensus, providing definitive guidance remains challenging.

World Sleep Day serves as an opportunity to highlight global sleep issues and emphasise the need for targeted research, particularly into complex diseases such as ME/CFS.
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https://www.meresearch.org.uk/world-sleep-day-2025/
 
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ME Research UK:
Liz Smith CBE MSP has laid a Motion before The Scottish Parliament inviting fellow MSPs to support the proposition "That the Parliament marks International ME Awareness Day 2025 on 12 May" and also, as one of ME Research UK's regional list MSPs, to commend our work as ME Research UK marks its 25th anniversary. https://tinyurl.com/2b8jtfhj
#InternationalMEAwareness #MEAwareness #ScottishParliament
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ME Research UK:

In 2024, ME Research UK initiated the “Founders’ Science Writing Award”. This annual competition invites high quality articles relevant to biomedical research into ME/CFS, and this year asks early career scientists to discuss the theme "ME/CFS 2025 – research challenges and opportunities.” As ME Research UK marks 25 years since its foundation, the past few decades have seen a seismic change in the research landscape.

Whilst all areas of research require scientists to think critically – for example, about the topic of investigation, the population of interest, and the methods used – for ME/CFS researchers, there are additional challenges to consider, including the complex nature of the disease; for example ME/CFS symptoms can not only differ between people, but also within the same individual over time.

However, as research understanding deepens, new discoveries are made, and methodologies advance, there are new opportunities to address the challenges faced in ME/CFS research.

Therefore, ME Research UK invites Entrants to consider the evidence relating to the challenges and opportunities within ME/CFS research. This could be specifically in relation to the Entrant’s area of research, or a wider take on current understanding or state of ME/CFS research.

The competition aims to give early career researchers the opportunity to develop skills in communicating science in a way that is accessible and engaging to the public - These skills are essential to aid researchers secure funding in the modern research landscape, and to communicate important findings to people with ME/CFS, and the wider public.

Read more: https://bit.ly/3XV2l3f

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ME Research UK – May e-newsletter
Four Nations Mark International ME Awareness Day
At the behest of ME Research UK, the four home nations united to mark International ME Awareness Day 2025. [...]
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ME Awareness Week
During ME Awareness Week, we raised awareness about the debilitating nature of ME/CFS. [...]
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ME Research UK at Stormont
Robbie Butler MLA opened a highly successful meeting at the Northern Ireland Parliament Buildings organised by Hope4ME & Fibromyalgia NI – a charity run by patients and family volunteers for people with ME, Fibromyalgia, and Covid-induced ME. [...]
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Articles
A US-based research team has investigated the physiological similarities between individuals with ME/CFS and those with long COVID using invasive cardiopulmonary exercise testing. The findings reveal that both groups exhibited a comparable pattern of physiological limitations during exercise. [...]
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Joanne Hunt – a researcher at Uppsala Universitet in Sweden and a “person with severe ME/CFS” – has written an article highlighting how the lack of attention given to inequalities between different groups of people with ME/CFS – different ethnic groups, for example – leads to the experiences, viewpoints and interests of those who are in the majority group being treated as universal.
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A new study from researchers in Japan has looked at static and kinetic disequilibrium (instability when upright or when walking) in people with ME/CFS, and investigated the potential therapeutic benefit of a non-invasive treatment called repetitive transcranial magnetic stimulation.
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Other topics explored in May included new estimates of ME/CFS prevalence in the UK, reduced sphingolipid metabolism and immune cell hyperresponsiveness.
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Founders’ Science Writing Award
This competition aims to give early career researchers the opportunity to develop skills in communicating science in a way that is accessible and engaging to the public. The second annual competition was launched in May, with this year’s theme being “ME/CFS 2025 – Research Challenges and Opportunities”.
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Blue Sunday – Thank you
Thanks to everyone who took part in Anna Redshaw’s “Blue Sunday” Tea Party for M.E. [...]
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