Our Research Projects
Completed Projects
Definition and Symptoms:
- Dysautonomia is a clinical syndrome involving dysfunction of the autonomic nervous system (ANS).
- The ANS regulates vital functions like heart rate, digestion, and body temperature.
- Common symptoms include:
- Abnormal heart rate fluctuations
- Headaches
- Anxiety
- Excessive or reduced sweating
- Severe fatigue
Association with ME/CFS and Long Covid:
- Dysautonomia is present in over half of patients with ME/CFS and Long Covid.
- Despite prevalence, standardized treatment options remain limited.
Need for Research:
- The persistent and debilitating nature of symptoms underscores the need for effective, evidence-based management strategies.
Study Objective:
This pilot study aims to:
- Develop and evaluate a personalized Dysautonomia Management Protocol (DMP)
- Improve symptom management
- Enhance quality of life
- Lay the groundwork for future large-scale research initiatives
Grant Amount: £101,531.62
University of Oxford
Research Field: Diagnostic Markers
Professor Karl Morten
Start Date: 01/11/2019
End Date: 31/10/2025
Status: Complete
Numerous research papers have published from this research group – more information on button below
Research History:
- Since 2016, the ME Association has funded multiple research projects at the University of Oxford.
- Research focuses on the biological, mechanisms underlying ME/CFS, with an emphasis on:
- Mitochondrial Dysfunction
- Oxidative Stress
- Metabolic Abnormalities
Current Projects
Ramsay Biomedical Research Projects
Grant Amount: £39,554.13 (for Stage 1)
Oxford Centre for Clinical Magnetic Resonance Research (OCMR), University of Oxford
Research Field: Biomarker causes and Biomarker Discovery
Professor Ladislav Valkovič
Start Date: 01/04/2026
Duration: 12 months
Status: In progress
Overview
- This study investigates whether poor muscle oxygenation and delayed energy recovery contribute to fatigue and post‑exertional malaise (PEM) in ME/CFS.
- Uses two non‑invasive, state‑of‑the‑art techniques:
- Magnetic Resonance Imaging (MRI) to measure phosphocreatine (PCr) recovery — “direct and non‑invasive insight into oxidative energy production.”
- Near‑Infrared Spectroscopy (NIRS) to assess muscle oxygenation using a small light probe — “rapid assessment of muscle oxygenation… involves a small light probe on the skin.”
- Stage 1 (funded, now recruiting): Baseline comparison of muscle metabolism in 20 people with mild ME/CFS and 10 sedentary healthy controls.
- Participants complete MRI, NIRS, blood and urine sampling, questionnaires, and wear a smartwatch; healthy controls also complete a sub‑maximal bike test.
- Stage 2 (funding required): Repeats all assessments during PEM, induced by a supervised sub‑maximal exercise test.
- Researchers expect to see slower PCr recovery, reduced oxygen utilisation, and exercise‑inflated mitochondrial dysfunction during PEM.
- Blood and urine samples will support future research including proteomics, metabolomics, Raman spectroscopy, and micro‑clot analysis.
- Findings could help explain why even small amounts of activity trigger severe PEM and may support development of scalable diagnostic tools such as NIRS.
- Stage 1 is funded thanks to supporters of the Big Give Christmas Challenge.
Grant Amount: £32,149.30
UK Dementia Research Institute’s Fluid Biomarker Laboratory at University College London (UCL)
Research Field: Biomarker Discovery
Miss Sophie Hicks, under the supervision of Dr Amanda Heslegrave, Dr Michael Zandi, Professor Henrik Zetterberg
Start Date: 01/12/2025
Duration: 12 months
Status: In progress
Overview
- ME/CFS and Long Covid are debilitating illnesses that currently lack validated diagnostic tests.
- Biomarkers in blood offer a promising route to earlier and more accurate diagnosis.
- Previous challenges have included limited sensitivity (detecting very low-level molecules) and specificity (distinguishing overlapping conditions).
- This pilot study uses an advanced, cost-effective technology — ALAMAR Bioscience’s NULISA platform — to measure more than 300 neurological and inflammatory proteins.
- The approach should detect subtle biological changes that previous methods have missed.
- Samples come from well-characterised cohorts via the UK ME/CFS Biobank and the UCLH STIMULATE ICP Long Covid study.
- The study aims to identify biomarkers specific to ME/CFS, and to Long Covid, or shared between both conditions.
- Data analysis will use statistical and machine-learning methods to identify diagnostic signatures.
Introduction
The ME Association (MEA) has committed £1.175 million to a major new research project – its largest ever investment, and the biggest amount any charity has committed to Long Covid (LC) or ME/CFS research.
Since the Covid-19 pandemic began, huge amounts of research have gone into understanding Covid-19 and Long Covid. The MEA has consistently argued that ME/CFS should have been included in this work, because the two conditions show many similarities. The new Rosetta Stone project will finally allow researchers to study them side by side, on a scale never attempted before.
Overview
The aim of this project is to understand what is happening in the body at the cellular and molecular level in people with LC and ME/CFS. The research team will do this by directly comparing biological samples from people with these conditions to those from healthy individuals. By studying these groups side-by-side, they hope to identify the key biological changes that may explain symptoms, offer a guide to future treatments, and supply serum markers to be used both in referral pathways and in stratification for clinical trials. Improve sample preparation and compare fresh versus cryopreserved cells.
They will study:
- Proteins in the blood, to reveal shared disease patterns or underlying mechanisms in LC and ME/CFS
- Immune function, including autoimmune antibodies, autoimmune T cells, different immune cell types, and their metabolic activity, to show common changes that could help explain symptoms.
- Human herpesviruses, such as EBV, HHV-6B, and HHV-7, which are reactivating in these conditions, and how virus levels and T-cell immune responses relate to illness
- and gut microbiome disturbances.
Origin
- Builds on 2019 work by Prof. Ron Davis detecting electrical abnormalities in ME/CFS blood cells.
Initial Study
- Funded by ME Association and ME Research UK in 2023; showed distinct electrical properties in ME/CFS PBMCs vs. healthy controls.
Key Findings
- Suggests ion channel dysfunction and altered ionic composition in ME/CFS cells
- Electrical signatures may distinguish ME/CFS from other conditions
- Supports potential for a diagnostic biomarker
Phase II Goals
- Test a larger, more diverse cohort
- Improve sample preparation and compare fresh vs. cryopreserved cells
- Compare ME/CFS with Long Covid, MS, and healthy controls
- Investigate ion channel mechanisms and test low-dose naltrexone (LDN) as a potential modulator
Previous Research & Observations:
- LDN (Low Dose Naltrexone) has shown safety and effectiveness in chronic conditions like Fibromyalgia.
- Observational studies suggest LDN may improve energy, pain, and sleep in ME/CFS patients, with only minor adverse effects reported.
About Naltrexone:
- Naltrexone is an opiate antagonist approved for alcohol and opiate use disorders.
- Used off-label at low doses for ME/CFS, Fibromyalgia, and Crohn’s disease.
Mechanism of Action (LDN):
- Temporarily blocks certain opioid receptors, increasing their number and sensitivity.
- Enhances circulation of endogenous opiate-like molecules, which are typically reduced in ME/CFS.
- Potential effects include reduced pain and inflammation, improved immune function, and enhanced well-being.
- May counterbalance the pro-inflammatory state associated with early ME/CFS, supporting recovery.
Grant Amount: £220,787 for 2026-2027
Total Investment: £1,091,822 from 2009-2027
London School of Tropical Medicine (LSHTM)
Research Field: Infrastructure Project
Dr Luis Nacul
Current Grant Start Date: 01/01/2026
Duration: 24 months
Status: In progress
Overview of UK ME/CFS Biobank (UKMEB):
- Established in 2011 to support biomedical research into ME/CFS, which was initially funded by Action for M.E. (AFME), ME Research UK (MERUK) and The ME Association (MEA).
Purpose and Reach:
- Provides high-quality biological samples to research teams worldwide, including:
- UK, Europe, North America, Latin America & the Middle East.
- Known internationally for efficiency and quality.
- Increasing demand for samples reflects its value in advancing ME/CFS research.
Biobank Contents:
- Includes samples from:
- Mild to severely affected ME/CFS patients (ages 18–60)
- Healthy controls
- Patients with neurologically diagnosed multiple sclerosis (MS)
- Types of blood samples stored:
- Serum
- Plasma
- Peripheral blood mononuclear cells (PBMC)
- Red blood cells/granulocyte pellet
- Whole blood
- RNA
Funding and Operations:
- Basic running costs now covered by the MEA Ramsay Research Fund (RRF).
Overview:
- In 2023, the ME Association partnered with the Manchester Brain Bank to support post-mortem research into ME/CFS.
- Through the Ramsay Research Fund, detailed examinations of brain and nervous system tissue—including the spinal cord and dorsal root ganglion—will be carried out on at least five individuals aged 18–50 with a confirmed diagnosis.
- The age limit helps ensure findings are specific to ME/CFS rather than age-related changes. Those wishing to donate must meet the same diagnostic and age criteria. Research focuses on the biological, mechanisms underlying ME/CFS, with an emphasis on:
Ramsay Healthcare Research Projects
Beyond biomedical research, we recognise the need to strengthen existing healthcare systems and clinical practice. That’s why we also invest in healthcare-focused projects and support students who are engaged in ME/CFS and Long Covid research.
Ramsay Healthcare Research aims to:
- Improve clinical practice, care provision, and patient-centred outcomes
- Enhance policy and guidelines through evidence-based research
- Support education and training for healthcare professionals
- Produce high-quality systematic reviews to inform national discussions
- Ensure the latest discoveries reach the frontlines of patient care and policy development.
Grant Amount: £59,750
University of Manchester
Research Field: Healthcare
Professor Sarah Tyson
Start Date: 01/08/2025
Duration: 18 months
Status: In progress
Background
- There is currently a lack of reliable tools in ME/CFS services to assess symptoms and disability.
- Phase I of this research project co-produced validated PROMs with patients and clinicians.
Phase II of this research project will:
- Disseminate findings via peer-reviewed publications.
- Expand the toolkit with three new resources (co-morbidities checklist, care plan, child-friendly version).
- Implement widely via website and digital apps for individuals and NHS services.
Background
- ME/CFS research suffers from inconsistent diagnostic criteria.
- This project aims to develop a standardised, patient-informed framework to improve research quality and comparability.
Key activities
- Surveying patients, clinicians, and researchers
- Conducting a scoping review of symptom severity measures
- Hosting a panel discussion at IACFS/ME 2025 to explore controversies and build consensus
Planned outputs
- A consensus framework
- A published report
- Practical guidance for researchers
Background
- ME/CFS significantly affects health, yet little research has examined its impact on pregnancy outcomes for both birthing parent and child.
- Lack of evidence creates uncertainty around family planning, pregnancy care and postpartum care.
Recent Research
- A mixed-methods systematic review was previously conducted by the research group on ME/CFS and pregnancy, funded by Newcastle Healthcare Charity.
- This review identified key knowledge gaps and the need for high-quality research is needed to inform evidence-based clinical guidelines.
Pilot Study Goals
This research aims to:
- Establishing key research priorities from the perspectives of individuals with ME/CFS and their healthcare providers regarding pregnancy.
- Exploring experiences, attitudes, and perceptions related to pregnancy and ME/CFS.
- Investigating decision-making around pregnancy among patients and professionals, including doctors, midwives, and health visitors.
- Identifying existing clinical data collection practices related to ME/CFS and pregnancy to shape future research.
Student Research – PhD Funded Projects
We recognise the importance of supporting student researchers and fostering the next generation of ME/CFS and Long Covid scientists. Student projects spark innovation, expand academic collaborations, and promote fresh approaches to advancing diagnosis, treatment, and care.
By supporting students, we help embed lived experience into study design, strengthen future capacity in underfunded areas, and ensure the latest science continues to serve patients and clinicians alike.
We welcome students to get in touch whether undergraduate or postgraduate who seek funding support or who need help disseminating their surveys or projects: research@meassociation.org.uk
Grant Amount: £16,000
Rosalind Franklin Institute
Research Field: Pathophysiology
Aleyna Lumsden, under the supervision of Dr Bela Paiza and Professor Karl Morten
Start Date: 01/10/2025
Duration: 4 years
Status: In progress
Background
- ME/CFS is hard to diagnose and treat due to its complex biology and lack of biomarkers.
- Metabolomics, a branch of “omics,” studies small molecules to find disease-specific patterns.
- Mass spectrometry (MS) helps detect these molecules, but identifying unknowns is challenging.
- Traditional tools like Nuclear Magnetic Resonance (NMR) are slow and limited—advanced methods and modelling are needed.
Project Overview
- Goal: Identify unknown molecules in ME/CFS patients and healthy controls to find potential biomarkers.
- Uses of advanced tools across different research sites, including ion mobility mass spectrometry combined with liquid chromatography and tandem MS (LC-MS/MS).
- Combining lab techniques with computer modelling (Universal Fragmentation Model -UFM) to predict molecular behaviour.
- Findings will be validated using NMR or microED, which then can be mapped to confirm molecules to disease pathways.
- Hopefully findings will inform new diagnostics and treatment strategies.
Background
- Transcutaneous auricular vagus nerve stimulation (taVNS) is a non-invasive method used to stimulate the vagus nerve via the ear, showing promise for conditions like epilepsy, depression, and migraines, and potential benefits in memory, inflammation, and pain.
- Interest in taVNS is growing, however, to date only one former study has been conducted (Natelson et al., 2023)
Study Aims
This study will help prepare for more rigorous research into taVNS as a potential treatment for ME/CFS through:
- Assessing the feasibility of a full-scale trial (recruitment, adherence, etc.),
- Determining appropriate sample size and outcome measures,
- Understanding patient experiences with taVNS,
- Evaluating the treatment’s safety.