Invest in ME Research - an independent UK charity
Finding, facilitating and funding research into 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
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) was set up with the objective of making a change in how ME was perceived and treated in the media, by health departments and by healthcare professionals. We concentrate on three key areas to concentrate our efforts on - funding for biomedical research, education and lobbying. Our aim is to find, fund and facilitate biomedical research into ME.
Invest in ME Research have been working to establish an international strategy of biomedical research into ME and a UK and European Centre of Excellence
for biomedical research into ME.
Help us make ME an illness which is properly understood and where high-quality biomedical research into
ME is performed allowing treatments and cures to be found.
Use Our Website
Research
Our research strategy and the research funded by the charity
Information
Information and articles about ME
Conferences
Our annual international Colloquiums/Conferences
Fundraising
Details of our fundraising activities and how to help us
Let's Do It For ME
Patient-driven campaign to raise awareness and vital funds for research into ME
About Us
More information about the charity
News
Current and archived news from the charity
Centre of Excellence for ME
Our proposal for a UK Centre of Excellence for ME
Education
Useful educational aids for ME awareness
European Collaboration
Founder member of the European ME Alliance (EMEA) – working together across Europe
Recent/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.
