Earlier this week, ME Research UK highlighted an article which, despite a small sample size, suggested that people with ME/CFS may have dysregulation of the hypothalamic-pituitary-adrenal (HPA) axis. Notably, the HPA plays a critical role in regulating stress responses, immune function, and energy production and utilisation (metabolism) – all systems which have been linked to […]|
ME Research UK and the Daphne Jackson Trust award a Fellowship ME Research UK and the Daphne Jackson Trust are delighted to announce that we have awarded a Fellowship to Dr Alkisti Manousaki, at the University of Leicester, for a project investigating the genetic and cellular clues that may explain why ME/CFS affects more women […]|
Possible positive news from the United States Congress on prospects of having the ME/CFS Roadmap fully endorsed, funded and operationalised. The Senate has officially recognised the ME/CFS Research Roadmap — and has directing the NIH to create a detailed implementation plan. Next stages are that the House of Representatives is expected to release its own […]|
Thanks to our wonderful supporters ME Research UK has reached our already increased Pledge target for this year’s Christmas Challenge – a day earlier than the original deadline. Yesterday, the Big Give extended the Pledge phase to 11pm Sunday 7th September and so, to aid those who wish to participate, we have increased our Pledge […]|
On 30th July 2025 Jackie Baillie MSP (at the behest of ME Research UK) tabled 3 questions of interest to the ME community which have now been answered by Jenni Minto MSP as Minister for Public Health and Women’s Health. The questions being – On the research specific query, it would appear that nothing specific […]|
There are several types of signaling molecules (hormones) in the body, including fat-soluble molecules, called steroid hormones. Steroid hormones, such as those produced in the adrenal gland (cortisol and adrenaline), and sex hormones (like oestrogen and progesterone), play a key role in many processes in the body, including those which have been found to be dysregulated […]|
The Big Give has announced a 1 week extension for the pledge phase of their fundraising initiative. Pledges can now be made until 11pm Sunday 7th September. ME Research UK is so close to achieving our Pledge goal of £19,000 that the extra week may just get us over the line. £100 is the minimum […]|
Background SMPDL3B (short for sphingomyelin phosphodiesterase acid-like 3B) is a protein that sits on the membrane of cells and influences lipids (fatty/waxy substances) within the membrane. Specifically, it tweaks levels of certain lipids called sphingolipids, which are both structural components of the cell membrane and signalling molecules. By regulating these lipids, SMPDL3B can affect how […]|
Our 2025 collection of Christmas cards is now on sale. There are eight designs available this year, and you can buy them via email, phone or post, or at our online shop. Every purchase helps to support our work investing in ME research, and we are grateful to everyone who supports us in this way […]|
Assistant Professor Rob Wüst, who is working on research funded by ME Research UK, spoke at the International ME/CFS Conference 2025 on skeletal muscle alteration in Long COVID and ME/CFS. In his talk, Wüst discussed mechanisms which may explain post-exertional malaise (PEM) including: Changes in energy production and utilisation in the body (metabolism). Impaired recovery…| www.meresearch.org.uk
With a month to go before the Big Give pledge phase ends at 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.£100 is the minimum pledge permitted by The Big Give. We appreciate that this is a…| www.meresearch.org.uk
Age and recurrent infections are linked to worse PEM in ME/CFS Post-exertional malaise (PEM) – the worsening of symptoms after even minor physical or mental exertion – is one of the hallmark symptoms of ME/CFS. Its severity, and how long people take to recover, can vary between individuals, so researchers in France recently attempted to…| www.meresearch.org.uk
Ashley Dalton MP, Parliamentary Under-Secretary of State for Public Health and Prevention has issued a letter to coincide with the 22nd July 2025 publication of the ME/CFS Delivery Plan. Dear all, Publication of the myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) final delivery plan I am pleased to inform you that today we are publishing…| www.meresearch.org.uk
Last year, ME Research UK participated in The Big Give Christmas Challenge and raised over £60,000 of much-needed funds to invest in ME research globally. This year we would like to increase the amount of research we can fund by raising even more through The Big Give.| www.meresearch.org.uk
Listen to this article| www.meresearch.org.uk
Question by question small pieces of information on the government’s intentions re ME/CFS and the publication of the Delivery Plan are being teased out from Ministers.| www.meresearch.org.uk
A number of linked questions have been tabled by Alison Hume MP concerning ME/CFS in terms of the upcoming promised publication of the government’s Delivery Plan on ME/CFS, its content, and also on NICE implementation. Each written question being answered by Ashley Dalton MP Parliamentary Under-Secretary (Department of Health and Social Care) on behalf of the Minister.| www.meresearch.org.uk
Overview ME Research UK attended “The 16th Invest in ME Research International ME Conference 2024”, which was held at the Wellcome Genome Campus in Hinxton, Cambridgeshire, on 28th June 2024. The conference featured a variety of presentations and discussions centred on advancing research and clinical trials in ME/CFS. Videos of the presentation are available via…| www.meresearch.org.uk
This is the second of a two-part series discussing research from 2020 by Barbara Stussman and colleagues exploring the experiences of post-exertional malaise (PEM) in 43 individuals who reported having ME/CFS. Read part one of this article for an overview of the study. Triggers of PEM Physical triggers The study revealed that even seemingly minimal…| www.meresearch.org.uk
Assistant Professor Rob Wüst of Vrije Universiteit Amsterdam has been awarded a grant from the Netherland’s ZonMw for his research project entitled, ‘From sick to sicker with exercise: deciphering the base of post-exertional malaise in post-COVID’. In addition, ZonMw is also funding four additional research projects involving Prof Wüst as a co-applicant.| www.meresearch.org.uk
It has been reported that responses have been received from parties named in the assistant Coroner’s preventing future deaths report issued in light of the death of Maeve Boothby O’Neill. | www.meresearch.org.uk
Almost 3 years after her death, a full Coroner’s Inquiry will open on 22 July 2024 examining the circumstances surrounding the death of 27-year-old Maeve Boothby O’Neill from severe ME. The two-week Inquiry will look at her ‘care’ at the Royal Devon and Exeter Hospital, delays in palliative care, and the wider lack of understanding in the medical community of ME/CFS. | www.meresearch.org.uk
On the 27th of August 2024, BBC Breakfast included a segment on ME/CFS – particularly ME/CFS which is “triggered by long COVID”. | www.meresearch.org.uk
ME Research UK has welcomed the release by the UK Department of Health and Social Care (DHSC) of ‘My full reality: the interim delivery plan on ME/CFS‘. The Department is seeking responses to the plan via an online survey, which you can complete here.| www.meresearch.org.uk
The inquest into the events surrounding the death of Maeve Boothby O’Neill on October 3, 2021 is presently being held at Exeter Coroner’s Court, County Hall, Exeter (from 22 July to 2 August 2024 with the Coroner recording her conclusions on 9th August). In summary and to capture the essence of issues regarding the ‘care’ given to those with severe ME and to Maeve in particular, ME Research UK selects quotes from each day’s proceedings and provides links to newspaper and media reports.| www.meresearch.org.uk
The inquest into the events surrounding the death of Maeve Boothby O’Neill on October 3, 2021 is presently being held at Exeter Coroner’s Court, County Hall, Exeter (from 22 July to 2 August 2024). In summary and to capture the essence of issues regarding the ‘care’ given to those with severe ME and to Maeve in particular, ME Research UK selects quotes from each day’s proceedings and provides links to newspaper and media reports. The Inquest will be adjourned on 2nd August and rec...| www.meresearch.org.uk
“Maeve and her family were forced to battle the disease alongside the healthcare system which repeatedly misunderstood and dismissed her.”| www.meresearch.org.uk
During the fortnight-long proceedings at Exeter Coroner’s Court, assistant Coroner Deborah Archer has presided over a hearing which has proven to be highly emotional for all concerned, but also focused the attention of the media and the medical profession on the ‘care’ provided to those with severe ME, specifically by the Royal Devon and Exeter Hospital but also by NHS England generally.| www.meresearch.org.uk
Post-exertional malaise (PEM), the cardinal feature of ME/CFS, is profoundly debilitating and often unpredictable, significantly impacting the lives of those affected.| www.meresearch.org.uk
