Invest in ME Research
Christmas Fund Appeal Advent Calendar

A UK/European Centre of Excellence for ME

Our focus over the last year has been on raising funds for the clinical trial being performed by The Quadram Institute in Norwich Research Park.
This research is one critical element of developing more interest and collaboration in research into ME and forms a critical element in developing the UK/European Centre of Excellence for ME.

So it is appropriate that as we come to the concluding pages of our Advent Calendar for ME to mention the C of E for ME.

The charity's' proposal for a central research hub (a Centre of Excellence for ME) was first made in 2010, after charity representatives had sat in many meetings with the NHS for several years - wasting time and effort with little progress made in attempts to improve things for people with ME.

We decided then to do something about it.

The Centre of Excellence for ME concept creates 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 and correct cohorts of patients for research into ME.
These would consist of examinations, clinical diagnosis, translational biomedical research, clinical trials, reliable outcome measures, bioinformatics, tissue bank(s) to allow for more research opportunities and support) and improved education and training of healthcare staff.

Also in the plans are the development of up-to-date outcome measures that can be standardised across research teams.

By using the world class 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 and 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. IiMER had also funded more research at UCL with a project and 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 support from the Hendrie Foundation a project with B-cell research was initiated which allowed a preliminary study to be established and performed prior to the UK rituximab clinical trial.

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 and Quadram Institute -
Ultimately, the Norwegian Phase III rituximab trial proved negative but useful research and links were 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 that we have managed to overcome was the reluctance of established researchers to enter this field.

Now that we have achieved this then we need to maintain and expand upon it.

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 is located together.

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 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]

Norwich Research Park also highlighted the research in its newsletter

To our supporters we owe great thanks - you helped create something that was thought unachievable.

A sustainable Centre of Excellence for ME is now harnessing the benefits of a strategy of collaborative international biomedical research in modern facilities with world-class researchers.

The funds raised by the charity has allowed a research group to be firmly established in the Quadram Institute which allows 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 over £2 million for biomedical research into ME and associated support work and research meetings – mainly over the last few 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.

The collaboration with other UK and European researchers and institutes will create greater publicity and funding opportunities.

All of this has been achieved without any government, or major research council support.

In the last year the charity has not been idle. A number of proposals and requests were looked at and several new ideas are being developed.

The European ME Research Group (EMERG) also met again to develop plans.

And then came the pandemic.

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 these plans.

Invest in ME Research Christmas Appeal - Mainstreaming ME Research

Unlike other charities Invest in ME Research is a charity of volunteers and no funds are spent on salaries or spokespersons.

The Invest in ME Research press release whereby the charity has pledged £625,000 for biomedical research in Norwich Research Park is here

At the beginning of the year Invest in ME Research and The Quadram Institute arranged a public day where the research into ME and the clinical trial was discussed. More information is available here

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