Invest in ME Research

An independent UK charity
Energising research into Myalgic Encephalomyelitis (ME) with Research, Education and Advocacy

Invest in ME Research is an independent UK charity
Finding, funding and facilitating biomedical research into Myalgic Encephalomyelitis (ME)

ME - What it IS…

  • Myalgic Encephalomyelitis (ME) is a severe systemic, acquired illness
  • 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
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What Needs To Be Done?

The last decades have seen no major investment into correct research into myalgic encephalomyelitis.
Instead an approach to research has been taken which, despite objections from the patient community, has largely funded flawed psychiatric research about the disease.

Adequate funding must be directed to biomedical research and new knowledge from other disciplines such as virology, immunology , endocrinology etc has to be brought in to help research into ME.

What Are We Doing?

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

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 2023 and describes the Centre of Excellence proposal and development status.

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), and promoting better education and information about ME in order to raise awareness of the effects of the disease on patients and families.

Invest in ME Research is working to maintain and augment a UK/European Centre of Excellence for translational biomedical research into ME that will facilitate progress in treating this disease. We also believe that education of healthcare staff, the media, government departments, patient groups and patients is to be a priority.

Invest in ME Research is run by volunteers (patients or parents of children with ME) with no salaried staff and overheads are kept to a minimum to enable all funds raised to be used for supporting the charity's strategy.

Other Invest in ME Research Activity (click to expand/contract)

Our research strategy and the research funded by the charity. IIMER are 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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Our annual international research Colloquiums/Conferences In addition to the International ME Conference the charity also organises an annual International Research Colloquium that attracts researchers from around the world in order to discuss experiences and open up collaborations in order to find answers for this disease. By facilitating and initiating these links far quicker progress can be made in finding the cause of this disease.

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Founder member of the European ME Alliance (EMEA) – working together across Europe Invest in ME Research are one of the founder members of the European ME Alliance (EMEA) – a grouping of charities and patient organisations working together across Europe. Now fifteen countries collaborating. The charity also initiated the European ME Research Group (EMERG) and the European ME Clinicians Council (EMECC) in order to build collaborative research and clinical expertise in Europe.

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The international research Colloquiums and public conferences organised by the charity have spawned multiple collaborations. For ME we needed to do science differently. Despite limited resources the charity has facilitated new directions in research and enabled barriers to be been broken down between different areas of science, bringing together biomedical research from different disciplines.

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An extensive set of information articles exists to learn of the history of ME and how it has been treated. Also important to know is the way that establishment organisations have dealt with ME over decades.

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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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Details of our fundraising activities and how to help us

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Let's do it for ME! is a patient-driven campaign to raise awareness and vital funds for a UK Centre of Excellence for translational biomedical research into ME, clinical assessment, diagnosis and treatment for patients, training and information for healthcare staff, which would be based in the Norwich Research Park in the UK and aiming to work collaboratively with international biomedical researchers.

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More information about the charity Invest in ME Research is an independent UK charity finding, facilitating, and funding a strategy of biomedical research into Myalgic Encephalomyelitis (ME), and promoting better education about ME.

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Recent/Upcoming Events

Organised by Invest in ME Research
The fourth workshop organised by the charity for young / early careeer researchers - in association with our European ME Research Group Early Career Researcher network Young EMERG. This will take place on 25th June 2024 More details here.
#BRMEC13 - our thirteenth international Biomedical Research into ME Colloquium - will take place over two days on 26 -27 June 2024. More details here.
#IIMEC16 - Our sixteenth international ME conference will take place on 28 June 2024 at the Wellcome Genome Campus near Cambridge. More details here.
#EMERG24 - 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 25th June 2024

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 Director of Institute of Food Research and Head of Quadram Institute

European ME Alliance (EMEA)

Invest in ME Research is a founder member of the European ME Alliance (EMEA)

The European ME Alliance is a grouping of European organisations who are involved in supporting patients suffering from myalgic encephalomyelitis and are campaigning for funding for biomedical research to provide treatments and cures for ME.

Last Update January 2024