Huge Investment in Biomedical Research into ME in Norwich Research Park

UK Charity Invest in ME Research is pledging £500,000 for continued research into the disease myalgic encephalomyelitis (ME or ME/CFS) in Norwich Research Park, UK (NRP).

In a press release issued 2nd December 2019 the charity confirms a renewed commitment by the charity to developing a UK/European hub for high-quality biomedical research into ME.

Available as a file

The funding behind this pledge results from the efforts of the charity and its supporters - patients, carers, parents, friends and families affected by this disease. Many of these patients are house-bound, even bed-bound, and have created crowdfunded campaigns to support the charity using social media.
We have also an enormously generous pledge from The Hendrie Foundation (THF). THF has already supported IiMER by donating to previously performed research which set foundations for a rituximab trial for ME. Unfortunately, the results from the Norwegian clinical trial proved negative and it was not possible to continue with plans for the UK rituximab trial. Nevertheless, THF continued with their support for IiMER in relation to development of the Centre of Excellence and the ongoing research there.

The efforts of our supporters are exemplified in the Let's Do It For ME campaign - started by three severely affected patients from their homes. They have enlisted friends and families to join with Invest in ME Research to create a grassroots movement to fund biomedical research into the disease, and thereby compensating for the meagre offical funding that has been given to research into ME over the years.

Invest in ME Research will now have funded or part funded five PhDs performing research into ME and working in partnership with researchers to initiate a foundation of high-quality research in one of the largest and most prestigious research parks in Europe.

RESTORE-ME

Bacteriotherapy and Clinical Trials - A Quadram Institute based Clinical Trial for ME

Purpose: To undertake a study to determine the effectiveness of faecal microbiome transplantation as a treatment for ME: The RESTORE-ME study

Aim: To determine if there is a cause and effect relationship between a dysbiotic intestinal microbiota and ME by determining if treatment by FMT can resolve ME symptoms.

The charity received an application and this has gone through an independent peer-review process satisfactorily.

Following this the charity has now increased its pledge and is providing over 70% of the required funding.

The charity and Quadram Institute are actively looking at ways to fund the remaining amount required.

This project harnesses practically all elements of the Centre of Excellence for ME and would be a showcase for ME clinical trial and research.

In a new development the project will be benefiting from having the local ME clinic involved which will allow patient participation from a register of over 1600 local patients.
Also involved is one of the founder clinicians of the European ME Clinicians Council.


UEA – Invest in ME Research European PhD Studentship

Invest in ME Research wished to honour the memory and work of the Swedish ME patient, Anne Örtegren, by setting up a joint UK-Swedish PhD studentship which would see the long-standing collaboration between Norwich and Uppsala University continue.

This is an initiative created by the charity that we had hoped would link the research of Professors Blomberg and Bergquist with the Norwich Centre.

Following the passing of Professor Blomberg earlier in 2019 then the project is continuing within the European ME Alliance (EMERG) and with the collaboration between Quadram Institute and Professor Bergquist.


CCG Clinical Fellowship

Another project which Invest in ME Research is funding, in partnership with Quadram Institute and the Great Yarmouth and Waveney CCG, is the GP Fellowship Scheme. This scheme concerns the improvement of the quality of care delivered to patients.
The GP Fellowship scheme offers the opportunity to recruit, retain and develop GPs in Norfolk and Waveney. By increasing the skills of GPs in the primary care setting, they contribute to a future proofing of the workforce.

This fellowship - funded by a partnership between Quadram Institute and and Invest in ME Research - will see a GP spending one day per week for a year with Quadram Institute researchers and learning about ME and the ongoing and developing research.

We hope to develop this and augment the numbers and feel this will be a model that can be adopted elsewhere also in order to increase the knowledge about ME of GPs and community healthcare.

Allied to the creation of the European ME Clinicians Council (EMECC) this is another example of the charity working in Europe to develop the infrastructure necessary to perform high-quality biomedical research into ME and to improve education and knowledge of ME in healthcare - all elements of the Centre of Excellence for ME.


Further Comment


We welcome support to develop the above initiatives and the Centre of Excellence for ME in UK




Last Update 1/12/2019