Invest in ME Research

Invest in ME Research (IiMER) is an independent UK charity facilitating and funding an international strategy of high-quality biomedical research into Myalgic Encephalomyelitis (ME, sometimes referred to as ME/CFS), and promoting better education and information about ME in order to raise awareness of the effects of the disease on patients and families and overcome ignorance amd misinformation about the disease.
The charity is working to sustain and augment a UK/European Centre of Excellence for translational biomedical research into ME that will facilitate progress in treating this disease. We prioritise education of healthcare professionals, policymakers, media, and the public.

Invest in ME Research is entirely volunteer-run, led by patients and parents. We have no salaried staff, ensuring that every donation directly supports biomedical research and advocacy.

Research, Education, Advocacy

Our research strategy and the research funded by the charity. IIMER is facilitating and funding a strategy of biomedical research into ME. The charity is currently funding important research projects for ME in the UK and Europe. The main hub of research is in the Norwich Research Park with the Quadram Institute and University of East Anglia. The charity is also supporting the development of fundamental research into ME in Europe by supporting collaborative projects and discussions.

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Our proposal for a UK Centre of Excellence for ME. Translational biomedical research - an iterative feedback of information between the basic and clinical research domains in order to accelerate knowledge translation from lab to bedside and back to lab again - allows translation of findings in basic research more quickly and efficiently into medical practice to produce more meaningful health outcomes and facilitate the sharing of repositories and research-based facilities and laboratories. This is the model that we are supporting for a Centre of Excellence for ME in Norwich Research Park.

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A founder member of the European ME Alliance (EMEA) – a grouping of charities and patient organisations working together across Europe. The charity also initiated the European ME Research Group (EMERG), European ME Clinicians Council (EMECC) and Young EMERG for young/early career researchers in order to build collaborative research and clinical expertise in Europe.

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Our annual international research Colloquiums/Conferences attract researchers from around the world in order to discuss experiences and open up collaborations and discover answers for this disease. Despite limited resources the charity has facilitated new directions in research and enabled barriers to be broken down between different areas of science, bringing together biomedical research from different disciplines. By facilitating and initiating these links far quicker progress can be made in finding the cause of this disease.

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Raising awareness and advocating for the future of patients and their families has been part of the charity's work since it was formed.

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Current News

Current Research Highlights

The only clinical trial for ME in UK

- funded by IiMER

RESTORE-ME is the clinical trial being perfomed at the centre in Norwich Research Park by Quadram Institute.

A single site, randomised, double-blinded, placebo controlled Phase IIb study

The first trial in ME to use objective outcome measures; physical activity and cognitive function assessments

ME - What it IS…

Myalgic Encephalomyelitis (ME, sometimes referred to as ME/CFS) is an acquired and disabling, " serious, chronic, complex, and systemic disease associated with neurological, immunological, autonomic, and energy metabolism dysfunction ". It is classified as a neurological disorder by the World Health Organization (WHO) under ICD-11 Code: 8.E49 (previously ICD-10 G93.3).

  • Myalgic Encephalomyelitis (ME) is a disabling, long-term condition
  • Estimated to be 2* as common as MS and 3* times more prevalent than HIV/AIDS,
  • Clear clinical symptoms which manifest predominantly based on neurological, immunological and endocrinological dysfunction
  • Multi-factorial pathogenesis with the hypothesis of initiation by a viral infection prominent.
  • Most frequently follows an acute prodromal infection, varying from upper respiratory infections, bronchitis or sinusitis, or gastroenteritis, or an acute “flu-like” illness.
  • Before acquiring ME most patients were healthy, leading full and active lifestyles.
  • Reaction to physical and mental activity and sensory input is unique to ME.
  • Over-exertion can make ME worse and the effects are often delayed and may not be seen within 24 hours.
  • Symptoms can range from mild to very severe and can include:
    • Cardiac and Cardiovascular Problems
    • Cognitive Dysfunction
    • Gastro-intestinal Problems
    • Headaches
    • Hormonal Imbalance
    • Immunological Problems
    • Muscle Weakness and Intense Pain
    • Neurological Problems
    • Sleep Problems

What is ME? What is CFS? Guidelines for ME IiMER Leaflet

Creating Solutions

Invest in ME Research has dedicated effort to build a strategy of answers to the major problems and we are attempting as best we can to effect the necessary change.

High Quality Biomedical Research

The most promising route to finding cause and treatment - establishing a foundation of biomedical research into ME.
Invest in ME Research has initiated and funded high-quality biomedical research at UEA and Quadram Institute, UCL - and facilitated collaborations with other researchers and institutes in Europe by initiating the European ME Research Group (EMERG) to create a network of ME researchers in Europe.

Correct Diagnosis and Examinations

For clinical trials the patient cohorts being used need to be correctly categorised which in turn requires consultants to correctly diagnose ME.
Our aim is to have specialised ME consultants performing a standardised and thorough set of examinations for people with ME. We have worked with the Quadram Institute to create a Clinical Fellowship programme for ME and initiated the European ME Clinicians Council (EMECC) to create a network of ME researchers in Europe.

Up-to-Date Education

Education about ME is the foundation for future treatments. Medical students and the government and media outlets need correct and up-to-date information and education about ME.
We have funded medical students to intercalate in their fourth year of training into biomedical research projects that we are funding. The charity initiated the European ME Clinicians Council (EMECC) to bring together clinicians working with ME.

Adequate Funding

There has been comparatively little funding for biomedical research into ME and what has been provided has mainly gone to flawed psychological therapies.
Invest in ME Research and supporters have raised well over £2 million in recent years for biomedical research and related collaborative initiatives. As of January 2025 the charity was funding the only clinical trial for ME in the UK and has funded two fellowships and multiple PhDs for research into ME. We hope to achieve more.

Invest in ME Research

Research Collaboration

Collaboration has been one of the central tenets of Invest in ME Research’s policy following our second international ME conference in 2007 in London.

As a founding member of the European ME Alliance we work with international colleagues (advocates, researchers, research organisations and physicians) to make rapid progress in finding the cause of ME and providing treatments for all. Funding applications will be considered from outside of the UK though we do prefer to use collaborations with UK and European organisations and researchers.

Invest in ME Research also initiated and facilitated the formation of the European ME Research Group (EMERG) - The European ME Research Group - a collaboration of researchers and institutes within Europe. More details can be found at the EMERG website.

The charity has a preference for involving EMERG members in all research that we fund or support.

The charity also has facilitated and encouraged international collaborations and our annual research Colloquiums attract researchers from around the world. The charity also often funds the registration costs for researchers which is also part of funding of research.

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Our next Colloquium and Conference

The 2025 international conference week occurs from 26-30 May.

Conference News

Recent/Upcoming Events

Organised by Invest in ME Research
The fifth workshop organised by the charity for young / early career researchers - in association with the European ME Research Group Early Career Researcher network Young EMERG. This will take place on 26-27 May 2025 More details here.
#BRMEC14 - our fourteenth international Biomedical Research into ME Colloquium - will take place over two/three days on 28 -30 May 2025. More details here.
#IIMEC17 - our seventeenth international Biomedical Research into ME Colloquium - will take place over two/three days on 28 -30 May 2025. More details here.
#EMERG25 - A full in person meeting for the European ME Research Group (EMERG) will take place at Hinxton Hall on the Wellcome Genome Campus near Cambridge, UK on 27th June 2025

Advocacy Examples

The following documents are recent statements from the charity on major issues.

Debate January 2019

Some of the issues relating to the UK parliamentary debate on 24th January 2019 with also included a one page summary of recommendations

Status of ME 2018

A status of ME document produced by the charity for the parliamentary meeting in 2018 that led up to the 2019 parliamentary debate in UK

NICE Commentary

Comments on NICE guidelines reviews and previous correspondence between the charity and directors of NICE guidelines development

Executive Summary

An Executive Summary for MPs has been updated in 2022 and describes the Centre of Excellence proposal and development status.

More Campaigning for ME

A Centre of Excellence for ME

Building a solid foundation for future biomedical research into ME

"....with the other expertise and facilities located at the Norwich Research Park, puts it in a very good position to lead a UK and European Centre of Excellence for biomedical research for M.E. to provide possible prevention and solutions."

- Professor Ian Charles - former Director of Institute of Food Research and Head of Quadram Institute



Last Update February 2025