Invest in ME Research
Christmas/New Year Fund Appeal Advent Calendar

A Centre of Excellence for ME

The main objective with our Christmas / New Year Fund Appeal was to raise funds for another PhD studentship and further the development of the Centre of Excellence for ME.

So it is appropriate that we use the last day of the Advent Calendar for ME to mention the C of E for ME.

The charity's' proposal for a Centre of Excellence for ME was first made in 2010, after having sat in meetings with the NHS for several years - wasting time and effort where there seemed little progress in attempts to improve things for people with ME.

The Centre of Excellence for ME is designed to create a hub of high-quality biomedical research into ME using standard and up-to-date guidelines and protocols which allows accurate diagnosis based on relevant tests. These would consist of full examinations, clinical diagnosis, translational biomedical research, bioinformatics, biobank(s) to allow for more research opportunities and support) and improved education and training of healthcare staff.

By using the facilities in the Norwich Research Park the opportunity is there for clinical trials to be carried out and a central point for medical education on ME to be established.

With the help of the Let's Do It For ME campaign our foundation research project was funded and established and began in 2013 at University of East Anglia/Quadram Institute in Norwich Research Park. This was the first crowdfunded PhD for ME more details are available at this link.
Further projects are underway in Norwich Research Park - more details here.

Concentrating on a Centre of Excellence hub does not mean that all research must be performed at the one location. Currently IiMER has funded more research at UCL than anywhere else and continues to fund a PhD studentship there.

The charity had been keen to replicate the Norwegian Rituximab trial findings and, in 2012, the charity announced its intention to facilitate and fund a clinical trial of rituximab. Thanks to the Hendrie Foundation B-cell research was initiated which allowed a preliminary study to be established and performed prior to the UK rituximab clinical trial.
Though the planned trial location had to be moved, due to downsizing of the clinical trials unit at UCL, research and discussions continued whilst the Norwegian trial was taking place.

Dr Oystein Fluge and his team from Haukeland University Hospital in Bergen, Norway, visited Norwich in January 2017 to collaborate with the researchers from University of East Anglia/Quadram Institute Biosience/University College London/Oxford University - details here.
Ultimately, the Norwegian Phase III rituximab trial proved negative but useful research and collaborations have resulted.

Had the rituximab trial in Norway turned out to be more positive then we could by now have been seeing the elements of the Centre coming into play to show what could be done.

The new building for the Quadram Institute provides new facilities and new possibilities and publicity for research into ME, and a coordinated environment where the Medical School, Clinical Trials Unit and research lab will be located together.

The Research Park is described by Quadram Director, Professor Ian Charles as follows -

“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.”
- Journal of IiME Conference Abstract 2015

As can be seen from the Quadram Institute web site [click here] ME is already firmly embedded as one of their “research targets” - facilitated by the groundwork performed already by the charity and its supporters.

The Carding group at the Quadram Institute is highlighting their research into ME – [click here] and [click here]

To our supporters we owe great thanks.
You helped create (almost) something which was thought unachievable - a major clinical trial which would have utilised all aspects of the Centre of Excellence approach.

Even though we could not proceed with the rituximab trial much was gained by establishing necessary collaborations that are needed in such a trial. Work was not wasted - research at least in UK depends on rules, regulations, ethics etc which all have to be fulfilled.

Not often realised is that one of the biggest problems we have managed to overcome was the reluctance of established researchers to enter this field.

Now that we have achieved that then we just need to maintain and expand upon it.
The head of Quadram has spoken twice at the Invest in ME Research International ME Conference and there is a major group performing research with international collaboration taking place - encouraged and facilitated by the charity.
The collaboration with other UK and European researchers and institutes will create greater publicity and funding opportunities.

In the last year the charity has not been idle. A number of proposals and requests are being looked at and several new ideas are being developed. International collaboration between researchers is underway thanks to the initiatives facilitated by the charity and researchers.

The funds raised by the charity have allowed a research group to be firmly established in the Quadram Institute which will allow clinical trials to be carried out in a state-of-the-art setting.

Invest in ME Research has, since establishing this proposal, raised in excess of £860,000 for biomedical research into ME – mainly over the last 3-4 years.
This has enabled new researchers to enter the field and firm collaborative links to be established between UK, European and US researchers and institutes.

All of this has been achieved without any government support.

A sustainable Centre of Excellence for ME that can build on these foundations is now an entirely attainable objective - harnessing the benefits of collaborative international biomedical research in modern facilities with world-class researchers.

We aim to continue to develop this world-class ME research centre based in Norwich Research Park that can form a hub of European research and treatment for this disease and produce a pathway to produce huge benefits for the nation and across the world.

This will continue to influence other researchers and institutes in their perception of ME and provide a pathway for career development in researching this disease. This, itself, will allow new ideas to be formed in researching and treating the disease.

The foundations are therefore already in place to advance science and provide the promise of better treatment and possible restoration of function and lives back to a section of the community who have received very little help in the past.

We welcome all support to enable us to complete this project.

THE Big Give Project for the BIG Cause

Invest in ME Research has a Big Give page describing the basics of establishing a Centre of Excellence for ME and a donate option for supporting this work. The link is here

Further Reading:

Back to our Advent Calendar page

Contact us

Send us an email. Use the form below