New Huge Investment in Biomedical Research into ME

UK Charity Invest in ME Research has made a new commitment to its strategy of high-quality biomedical research into myalgic encephalomyelitis (ME) by awarding £625,000 for continued research into the disease in Norwich Research Park, UK (NRP).

In a press release issued 28th July 2020 additional funding from the charity is confirmed for further developing a UK/European hub for high-quality biomedical research into ME.

Available as a file

This increase of the charity’s previous pledge of £500,000, that was announced in late 2019, is a major investment and ensures the imminent beginning of a clinical trial of Faecal Microbiota Transplantation (FMT) being performed alongside other high-quality biomedical research at the Quadram Institute (QI).

The funding behind this award results from the efforts of the charity and its supporters.

We have also an enormously generous pledge from The Hendrie Foundation (THF).
THF has promised to augment its previous funding pledge to the charity's research programme by agreeing to underwrite the remaining amount that the charity needs to raise for the trial.
Our supporters are patients, carers, parents, friends, families and philanthropists who are affected by this disease or wish to help the charity to pursue its objectives.
Many of our patient supporters are house-bound, even bed-bound, and have created crowdfunded campaigns to support the charity using social media.

The efforts of our supporters also continue to be 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.

We are very grateful to THF who have 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.
People with ME who wish to have this disease treated and researched in a scientific manner will be enormously grateful to the Hendrie Foundation for their great generosity and continuing support for this neglected disease.

An award has also been finalised for a joint funding of a PhD position in partnership with University of East Anglia.  Invest in ME Research will now have funded or part funded five PhDs performing research into ME.

The clinical trial and the latest PhD studentship are examples of the charity working in partnership with researchers to continue to develop a sound foundation of high-quality research in one of the largest and most prestigious research parks in Europe.

The funding for research and associated supporting activities that has been invested by the charity now exceeds £2 million.


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

Purpose: To undertake a study to determine the effectiveness of faecal microbiota 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.

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

The project will be benefiting from having the local NHS 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 (EMECC).

UEA – Invest in ME Research European PhD Studentship

Invest in ME Research wished to honour the memory and work of the Swedish ME patient and friend of IiMER, 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 Research Group (EMERG) and with the collaboration between IiMER, Quadram Institute, University of East Anglia and Professor Bergquist at Uppsala University.

The PhD studentship is funded by Invest in ME Research and UEA.

European Infrastructure Development

In 2019 Invest in ME Research re-formed the European ME Research Group #EMERG (EMERG) to create a solid network and foundation of European research that would allow European collaboration and the creation of a joint strategy of biomedical research into ME.

Collaborations are already underway in EMERG meetings and our hope is that this chance can be seized by all European biomedical researchers to enable a rapid pathway to finding cause(s) and treatment(s) for ME.

In 2019 Invest in ME Research had also initiated the European ME Clinicians Council (#EMECC) - taking inspiration from the USA where Mary Dimmock and Dr Lucinda Bateman had organised the US Clinicians Council.

The European groups held successful meetings in 2019 and formed a Steering group that met this year in Amsterdam early in 2020 to assess the status of the working groups that had been set up and create plans for the future.

The European ME Alliance (EMEA) is a grouping of European patient organisations and charities who are involved in supporting patients suffering from ME and advocating a strategy of biomedical research into ME to provide treatments and cures for ME.
The alliance was formed in 2008 by national charities and organisations in Europe.
The Alliance now has representatives from Belgium, Czech Republic, Denmark, Finland, France, Germany, Iceland, Ireland, Italy, Netherlands, Norway, Spain, Sweden, Switzerland and the UK – and continues to expand.

Further Comment

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

Last Update 23/07/2020