Centre of Excellence for ME #CofEforME
Developing a Centre of Excellence for ME Research
Since 2011, Invest in ME Research has originated, promoted and funded the UK & European Centre of Excellence for ME concept based in Norwich Research Park.
Rather than reinvention, the concept utilises existing facilities and infrastructure – not only for cost savings but also to encourage cross-disciplinary exchange and knowledge transfer from other areas.
The aim is to deliver a strategy of world-class biomedical with integrated clinical excellence and international collaboration for ME - and potentially for other illnesses arising from immune/nervous system dysregulation.
This page outlines our vision, progress and projects.
Help us develop this vital hub
Background
People with ME urgently need early, accurate diagnosis, proper treatment, and reliable advice. Despite recent plans purporting to resolve issues UK services remain inadequate, with biomedical research rarely applied - after decades of simplistic and flawed psychological therapies having ben offered instead - wasting public funds without helping patients. This leaves ME patients without genuine healthcare, hampers recruitment of new researchers and clinicians, and risks disease progression to severe forms due to lack of proper examination and ongoing care. Misdiagnosis is also common.
From 2010, following years of fruitless meetings with NHS, the charity proposed a Centre of Excellence for ME with the support of our advisor Dr Ian Gibson. Funding for specialist diagnostics was secured with Norfolk PCT (later derailed by NHS reforms).
The charity was awarded funding from The Hendrie Foundation to pursue a clinical trial in UK replicating promising
Norwegian reearch and preliminary B-cell research was funded and coooperation with the Nrwegian team took place.
The rituximab trial location was moved to Norwich Research Park but had to be discontinued once results from the Norwegian
trial came through.
Undeterred, we continued to build momentum through annual international research colloquiums and conferences, biomedical research funding, and medical student training - promoting and using Norwich Research Park's expertise (Quadram Institute, University of East Anglia, Earlham Institute, Norfolk and Norwich University Hospital).
Via the Let's Do It For ME patient campaign our foundation project at UEA/Quadram was funded. Several other PhDs were also funded. In 2020 the charity signed an agreement with Quadram Institute for a FMT clinical trial with university, hospital, and local ME clinic partners.
The efforts so far have already attracted researchers, physicians, and healthcare staff to become involved and build on
collaborations formed from around the UK, Europe, North America, and Australasia by the BRMEC* colloquiums.
An excellent foundation for research into ME now exists in a research park with major institutes, university, university hospitals
and clinical trials unit.
With funded clinical trial pojects (rituximab, FMT), and collaborations across Norwich Research Park, European ME Research Group, and global partners, this hub has seen the first two fellowships for ME and multiple PhD studentships and medical students working with researchers.
Key Milestones:
- 2023 - Second Fellowship for ME
- 2022 - First Fellowship for ME
- 2020 - Funding Award for Clinical Trial
- 2019 - Conference Announcements
- 2017 - Prof Ian Charles Opens IIMEC12
- 2015 - Prof Ian Charles Opens IIMEC10
- 2014 - Rituximab Trial project
- 2013 - Foundation Project
- 2012 - Let'sDo It For ME
- 2011 - Agreement with PCT
- 2010 - CofE proposal created
"The Gibson Inquiry into ME in 2006 demonstrated the lack of research into ME. It is important to establish centres of clinical excellence that would provide a thorough clinical assessment of ME patients, provide tests that would address the clinical diagnosis, establish a data base of patients with all their clinical signs and symptoms, identify important clinical deficits and needs with a view to offering effective diagnosis, treatment, and care."
Overview - The Centre of Excellence for ME Elements
Patient care at the heart of an integrated hub using Norwich Research Park's world-class facilities (UEA, Quadram Institute, Earlham Institute, NNUH). Invest in ME Research has established momentum by implementing research projects and synergising resources to build the foundations of a research base developing into a UK Centre of Excellence for Biomedical Research into ME.
Core workflow: GPs refer patients (using up-to-date accredited guidelines) for ME consultant examination (home visits for severe cases; eventual ambulatory/tele-medical services). Confirmed diagnosis using standardised outcome measures leads to stratified care packages , clinical trials access , and follow-ups feeding a research database/biobank for epidemiology and future studies.
Research integrates virology, immunology, gut microbiome studies with OMICS, AI, and systems biology via EMERG collaborations - rapidly translating into treatments using defined patient cohorts.
Education trains GP networks, medical students (intercalation), healthcare staff through seminars and EMERG conferences.
Benefits: Early diagnosis, specialist care packages, clinical trials participation, nationwide training, cost savings via centralised expertise, Europe's leading ME research facility.
Simple, sustainable structure leverages existing infrastructure for clinical excellence, research breakthroughs, and nationwide training.
"...a very good position to lead a UK and European Centre of Excellence for biomedical research for ME"
With over 3000 scientists at the Norwich Research Park, consisting of 4 world
leading research institutes, a university and a teaching hospital, it is one of Europe’s largest single-site concentrations
of research in Food and Health and Environmental sciences.
Having academic excellence across a range of diverse, but related fields, in one location is a very powerful way to deliver
a step-change in potential outcomes across a number of health issues.
Importantly, the new centre for food and health, due to open at the end of 2017 at the Norwich Research Park, takes
co-location to a new level as it uniquely integrates academic excellence with clinical expertise; by bringing together the
Institute of Food Research with aspects of the University of East Anglia’s medical school and science faculty with the Norfolk and Norwich University Hospitals' gastrointestinal endoscopy facility, working alongside industry.
The new Institute will provide a novel holistic, systematic and integrated approach to deliver faster innovation as well
as helping to inform government policy on a range of gut and diet related issues including M.E.
The development of this new centre, together 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.
FAQs & Next Steps
Ongoing Development
We would seek to establish additional biomedical research projects to be undertaken by the university and its partners in Europe which would increase the knowledge about the disease and facilitate development of treatments for patients.
In partnership with the charity more training courses would be arranged with visiting experts (researchers and clinicians) being able to share experiences and data and facilitate more education about the disease.
The original initial five year plan was based on a strategy of building capacity
and creating a foundation of research.
An update on this plan was given in 2023 following the recovery from
the pandemic - click here.
Potentially other partners would interact and collaborate with the research being undertaken at the hub.
Our aim is to maintain this momentum of research by continuing this support in the absence of natioanl agency funding.
FAQs
The Centre leverages Norwich Research Park's established infrastructure - UEA (clinical trials unit), Quadram Institute (microbiome/immunology), Earlham Institute (OMICS/bioinformatics), NNUH (patient examination/diagnosis). No new buildings needed - coordination maximises cost savings and cross-disciplinary knowledge transfer between virology, immunology, and gut research.
We are realists. Funding for ME research has been scarce for decades.
Yet it is why Invest in ME Research has attempted to initiate this alone in the absence and neglect from
government and governmental agencies,
The cahrity created a five year plan, laterrevised due to the pandemic,
which seeks to main PhDs and fellowships/postdocs in positions along with training of medical students.
Allied to this is collaboration using the opportunities from the INvest in ME Research Biomedical
Research into ME Colloquums and the formation of the European ME Research Group and Young EMERG for
early career researchers.
We do need help but our aim is to maintain momentum through ongoing funded research
and European collaborations.
Expand clinical trials (RESTORE-ME FMT trial at Quadram/NNUH), European ME Research Group collaborative projects and EU funding, develop international referrals generating income, launch epidemiological studies using patient database/biobank, secure EU funding via EMERG network. Aim: Europe's leading translational ME research/treatment facility.
Get Involved - Help Us
Invest in ME Research has worked tirelessly to develop the foundations of a viable Centre of Excellence. With limited resources, substantial achievements have been made in changing views, introducing new research, researchers and forging promising collaborations.
Executive Summary for MPs and Others
An Executive Summary has been produced describing the Centre proposal and development status.
Make your MP aware of the Centre and work underway. Send them the Executive Summary:
Our PhDs and fellows write articles. Check out the news from them. See more here
Sign up for our newsletter. Register for Quadram's Patient Database.
Invest in ME Research is a charity run by volunteers - no salaries, no status quo-centric attitudes, and income and effort directed entirely to funding and facilitating biomedical research into myalgic encephalomyelitis.
