United Kingdom: ME Research UK (MERUK) News

[Dolphin]

ME Research UK – enewsletter November 2024

https://www.meresearch.org.uk/me-research-uk-enewsletter-november-2024/

https://twitter.com/user/status/1863965073695293470

 

[Dolphin]

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.

https://bit.ly/3VmbD6W

https://twitter.com/user/status/1868599653022703683

 

[Dolphin]

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

https://twitter.com/user/status/1876932111308861564

https://tinyurl.com/3wb4y9s8

https://tinyurl.com/3wb4y9s8

 

[Dolphin]

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

https://twitter.com/user/status/1881643128035115328

 

[Dolphin]

ME Research UK:

ME Research UK's January (first e-newsletter of 2025!) was sent out today. Want to join the mailing list? It is easy to do - https://shorturl.at/Bvqeu

Alternatively, read the e-newsletter on our website - https://bit.ly/3EjR59u #MECFS #MEresearch #Myalgicencephalomyelitis

https://twitter.com/user/status/1885327339317301449

 

[forestglip]

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.

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.

we have looked at an update on EU research funding and on US recognition of International ME Awareness Day (12 May).

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.

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.

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.

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.

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.

 

[Sly Saint]

merged
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.

https://www.meresearch.org.uk/world-sleep-day-2025/

 

[Dolphin]

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

https://twitter.com/user/status/1915365649435476048

https://twitter.com/user/status/1914673914896121892

 

[Dolphin]

ME Research UK:

ME Research UK's April 2025 e-newsletter was sent out today. Want to join the mailing list? It is easy to do - https://shorturl.at/Bvqeu

Alternatively, read the e-newsletter on our website -
https://bit.ly/4lNP07b
#MECFS #MEresearch #Myalgicencephalomyelitis

 

[Dolphin]

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

https://twitter.com/user/status/1921890767846465850

 

[forestglip]

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. [...]

ME Awareness Week
During ME Awareness Week, we raised awareness about the debilitating nature of ME/CFS. [...]

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. [...]

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. [...]

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.

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.

Other topics explored in May included new estimates of ME/CFS prevalence in the UK, reduced sphingolipid metabolism and immune cell hyperresponsiveness.

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”.

Blue Sunday – Thank you
Thanks to everyone who took part in Anna Redshaw’s “Blue Sunday” Tea Party for M.E. [...]

Link

 

[forestglip]

ME Research UK – June e-newsletter
[Links to S4ME threads added in brackets]

Promising Findings from Our Researchers

“HERV fingerprints”
Prof. Elisa Oltra, Dr Karen Giménez-Orenga and colleagues at the University of Valencia have recently published more findings [S4ME] from their ME Research UK-funded study investigating human endogenous retrovirus (HERV) in ME/CFS.

The researchers analysed immune cells from women with ME/CFS, fibromyalgia, both conditions, and healthy controls. Using special microarray technology, they assessed HERV activity and discovered that each group displayed a distinct pattern of HERV expression, effectively distinguishing one group from another. [...]

Impaired motoneuron behaviour
Prof. Janet Taylor and Dr Chris Latella at Edith Cowan University have been investigating the source of muscle weakness in people with ME/CFS, as part of an ME Research-funded study. They presented some of their initial findings at the Australasian Neuroscience Society annual meeting last December. The researchers measured the activity of nerves supplying foot muscles during ankle contractions and found that this nerve activity was 25% lower in people with ME/CFS than in healthy controls. These results suggest that impaired motoneuron behaviour could contribute to muscle weakness in ME/CFS, and the team now plans to explore the mechanisms causing this.

Articles

ME Awareness Week Recap
For ME Awareness Week 2025, we shared infographics raising awareness about the debilitating nature of ME/CFS, but also about the research being conducted to tackle the symptoms associated with the disease. For ease of access, we have collated these postings into one article.

Heat, ME/CFS and orthostatic intolerance
People in the UK have been experiencing unusually hot weather this month, with a high of 33.2°C recorded on Saturday 21st June in one region. Whilst hot weather may bring to mind pleasant activities like day trips, those with health conditions exacerbated by heat are likely struggling. One such example is orthostatic intolerance, a common issue for people with ME/CFS, where the body fails to properly compensate for moving to an upright position.

Impaired energy metabolism and immune overactivation identified following exercise in men with ME/CFS
A study [S4ME] has identified significant differences following exercise in the responses of extracellular vesicles – particles in the body which play a key role in cell communication – between males with ME/CFS and male sedentary controls. [...]

Other topics explored in June include sleep reversal in ME/CFS [S4ME], immune cells and post-viral syndrome [S4ME], the nervous system and chronic pain, and the importance of “feeling heard, valued, and believed” by health professionals [S4ME].

London Marathon Place

Know someone who has been unsuccessful in the TCS London Marathon public ballot? We have good news – ME Research UK has been allocated a guaranteed place for the race on 26th April 2026, and we are offering one supporter the opportunity to take part.

Big Give Christmas Challenge – Pledge Today

Last year, ME Research UK participated in The Big Give Christmas Challenge and raised over £56,000 which enabled us to fund a project with Dr Sarah Annesley at La Trobe University in Australia looking at microRNA profiles and their impact on platelet function and energy production in women with ME/CFS. This year we would like to invest in much-needed research all over again!


The first step is to pledge. Pledges are needed not only to match donations, but they also encourage people to donate. Find out more about how to become a pledger.

Walk for ME – Thank you Alison!

Thank you to Alison Herbert, who, earlier this month, started her 177 mile walk along Offa’s Dyke in aid of ME Research UK as part of Walk for ME 2025, and has raised over £2000 so far!

Alison says “Too many men and women of all ages are living in the shadows due to this disease… For every £1 you donate it’s another step nearer to helping people with ME/CFS return to normal living.”

Hear more about Alison’s journey or support her fundraising

Link

 

[Dolphin]

Today (5th July) marks Research Appreciation Day, which celebrates the hard work of health researchers and scientists around the world.

This year, the organisers of Research Appreciation Day 2025 emphasise that ‘All breakthroughs in healthcare are made thanks to the work of researchers.’

Therefore, we highlight the work ME Research UK is currently funding, and celebrate the hard work of all researchers involved.
Read more: https://tinyurl.com/3zpu59ce

 

[Dolphin]

This year, ME Research UK marks 25 years since its foundation. To recognise this, the charity is launching ME Research Day.

ME Research Day 2025 will highlight the importance of the first major research point in ME/CFS history – the outbreak of a 'mystery illness', later labelled as 'benign encephalomyelitis' at the Royal Free Hospital, London, in 1955.

Read more: https://tinyurl.com/2w7reeb4

 

[Dolphin]

ME Research UK:
ME Research Day 2025 - 13th of July - marked the 70th anniversary of a major research point in the history of ME/CFS; the outbreak of a 'mystery illness' at the Royal Free Hospital, London in 1955.

Later, in a 1956 piece in The Lancet, this illness was labelled 'benign myalgic encephalomyelitis'.

In a series of articles, ME Research UK discusses why the outbreak at the Royal Free was important, why it was so hard to identify the cause of the outbreak and the implications this had, and the significance of the outbreak at the Royal Free today.

Read more: http://bit.ly/3TyxYgo

 

[Dolphin]

ME Research UK:

In 1986, Dr Melvin Ramsay, a British physician renowned for his research and advocacy on myalgic encephalomyelitis (ME), published Postviral Fatigue Syndrome: The Saga of Royal Free Disease (later titled Myalgic Encephalomyelitis and Postviral Fatigue States: The Saga of Royal Free Disease). The book documents cases of ME following various confirmed or suspected infectious outbreaks, including the notable 1955 Royal Free Hospital outbreak, during which Dr Ramsay served as a consultant. Drawing from years of clinical experience and accumulated evidence, his observations and subsequent insights continue to be relevant.

Read his insights: https://bit.ly/Ramsay86RoyalFree

 

[Jonathan Edwards]

It is a pity that charities are still confusing the Royal Free epidemic with ME//CFS.
I do wish we could move to a situation where patients are not fed confusing ideas about neurological diseases that probably never existed.

 

[Dolphin]

Last week, the first meeting of ME Research UK’s ‘Researcher Circle’ took place virtually. The Circle is aimed (initially) at PhD-level students working on projects funded by ME Research UK charity and aims to create an environment to encourage, support, and to facilitate the entrance and retention of early-career researchers in the field of ME/CFS research.

Read more about what was discussed in the session, and what the students thought: https://tinyurl.com/4ayja4m2

 

[Dolphin]

New project investigating the role of microRNAs in ME/CFS

ME Research UK is delighted to announce that we have awarded funding to Dr Sarah Annesley at La Trobe University in Australia for a new study looking at microRNA profiles and their impact on platelet function and energy production in women with ME/CFS.

Dr Annesley explains, “Our early research has found that certain microRNAs are altered in people with ME/CFS – and some of these changes are in microRNAs that control the expression of proteins related to energy production and platelet function.

“In this new project, we’ll study blood samples from women with ME/CFS and compare them to healthy controls to look for differences in microRNA profiles. We’ll also test whether these changes in microRNAs can actually cause changes in platelet activity and energy production using cellular models.

“If our hypothesis is correct, it could open the door to new treatment possibilities – including therapies based on microRNAs, which are already being explored for other illnesses.”

Find out more: https://bit.ly/annesley069

 

[forestglip]

ME Research UK e-newsletter – July 2025

ME Research UK launches annual ME Research Day

This year, ME Research UK marks 25 years since its foundation. To recognise this, the charity launched ME Research Day. The day – the 13th of July 2025 – was chosen as it marked the 70th anniversary of the outbreak of a ‘mystery illness’ at the Royal Free Hospital in London in 1955. This illness was later known as ME.

Research Appreciation Day & Researcher Circle

ME Research Day followed on from Research Appreciation Day, 5th July 2025, during which we highlighted the great strides made by researchers involved in ME Research UK-funded studies.

Furthermore, we have launched the ‘Researcher Circle’, aimed (initially) at PhD-level students working on projects funded by the charity, to help lay the foundations for future careers. The Researcher Circle is essentially an online space and friendly forum for learning, networking, and skill development through talks given by ME Research UK staff, established researchers and other relevant experts.

New project announcement: Dr Sarah Annesley explores the role of microRNAs in ME/CFS

Last week we announced a new project from Dr Sarah Annesley looking at profiles of microRNAs (molecules that switch on and off genes) and their impact on platelet function and energy production in women with ME/CFS. This work was funded, thanks to the generosity of supporters, with proceeds of last year’s Big Give Christmas Challenge. Dr Annesley explains a bit more about what the study involves in a video exclusively for ME Research UK.

Delivery Plan for ME/CFS published

The much-delayed ME/CFS Delivery Plan – finally published on 22nd July – announces just enough to be of interest but rather reads as a place setter for future decisions. It is to be seen if it incentivises central funders to engage fully, and to curate, endorse and fund the proposed research initiative backed by ME charities – including ME Research UK – which accords with the funders’ needs as to collaboration, patient involvement, multi-disciplinary approach, and to not be solely ME/CFS centred.

Read ME Research UK’s full commentary on the research details of the plan

It is also with sadness that ME Research UK learned of the death of prominent academic and former Chief Medical Officer Prof Sir Kenneth Calman. Sir Kenneth instigated the 2002 CFS/ME Working Group Report, which covered much of the same ground as the 2025 Delivery Plan.

70th Anniversary of the Royal Free outbreak & Dr Melvin Ramsay’s foresight about ME

For ME Research Day, ME Research UK discussed why the outbreak at the Royal Free was important and its significance today.

In 1986, Dr Melvin Ramsay, a British physician renowned for his advocacy on ME, published a book documenting cases of ME following various confirmed or suspected infectious outbreaks, including the notable 1955 Royal Free Hospital outbreak, during which he served as a consultant. We have curated a themed selection of quotes that resonates decades later.

Lived experience of ME

Following the publication of the ME/CFS Delivery Plan, The Independent shared a powerful account from Tracy Meggitt – a former biomedical research associate who was diagnosed with ME/CFS in 2018. When asked what she wishes more people understood about ME/CFS, Tracy was clear: ME is not depression. We have also explored the related topic of medical gaslighting.

PoTS and blood pressure

In response to a commenter, we published an article clarifying the relationship between blood pressure and postural orthostatic tachycardia syndrome (PoTS) – a common ME/CFS comorbidity.

Other topics explored in July include Prof. Oltra and her team’s work on HERV activation, brain differences related to ME/CFS onset types, health-related quality of life, and recommendations for health professionals from those with lived experience.

Big Give Christmas Challenge – Pledge Today

With a month to go before the Big Give pledge phase ends (5pm Friday 29th August 2025), ME Research UK is excited to announce that thanks to the generosity of supporters we have increased our Pledge goal to £19,000!

All funds raised in the December 2025 Big Give are invested in research. Pledge today.