Invest in ME Research
Input to APPG for ME November 15 2023
Raising the Flag for ME Around the World
Our next International ME Research Colloquium
WE- A Community and ME
Raising the Flag for ME in Europe 27 EU Marathons for IimER
Finding, funding, facilitating research into ME Become aware of myalgic encephalomyelitis (ME)
Building a foundation of biomedical research into ME A Centre of Excellence for ME
How our supporters are raising awareness and funding #TeamIiMER Funding the foundations for biomedical research into ME
Building European Collaboration in Research into ME European Researchers, Clinicians, Patients, Early Career Researchers
Update on Research into ME
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
read more
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.
High Quality Biomedical Research
The most promising route to finding cause and treatment
Invest in ME Research has contributed greatly to establishing a foundation of biomedical research into ME.
Correct Examinations for Patients
In order to perform clinical trials the cohort of patients being used need to be correctly categorised. This demands consultants to correctly diagnose ME. This does not occur in all cases presently.
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.
Adequate Funding
There has been very little funding for biomedical research into ME and what has been provided has mainly gone to flawed psychological therapies.
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.
High Quality Biomedical Research
Invest in ME Research has initiated and funded high-quality biomedical research at UEA and Quadram Institute, UCL - and brought in collaborations with other researchers and institutes in Europe. We have also initiated the European ME Research Group (EMERG) to create a network of ME researchers in Europe. Research
Correct Examinations for Patients
Our aim is to have consultants who specialise in ME performing a thorough set of examinations for people with ME. We have worked with the Quadram Institute to create a Clinical Fellowship programme for ME to improve knowledge of ME. We have also initiated the European ME Clinicians Council (EMECC).
Up-to-Date Education
We have facilitated a plan to educate medical students by allowing them to intercalate in their fourth year of training into biomedical research projects we are funding. The charity also initiated the European ME Clinicians Council (EMECC) to bring together clinicians working with ME.
Adequate Funding
Invest in ME Research and supporters have raised well over £2 million in recent years for biomedical research and related
collaborative initiatives. The charity is currently funding a major clinical trial in Norwich Research Park and has funded five PhDs
for research into ME.
We hope to achieve more.
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.
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.
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.
Read MoreOur 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.
Read MoreFounder 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.
Read MoreThe 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.
Read MoreAn 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.
Read MoreRaising awareness and advocating for the future of patients and their families has been part of the charity's work since it was formed.
Read MoreDetails of our fundraising activities and how to help us
Read MoreLet'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.
Read MoreRecent/Upcoming Events
Organised by Invest in ME Research
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.
