UK Centre of Excellence Funding News
Landmark Day for Research Funding
£1/2 million Raised/Pledged for B-cell Research/Rituximab Trial
Today we reach a landmark day in our B-cell/rituximab research project where the total in donations and pledges has reached £1/2 million.
This is a phenomenal achievement for the charity and its team of supporters.
Congratulations to everyone on this fantastic news. In a comparatively short period of time a huge possibility for making lasting progress into this disease has been created by your efforts.
In 2013, following the BRMEC3 Colloquium, Invest in ME and its supporters honoured the commitment made by the charity a year earlier, at the IIME7 conference in 2012, to initiate a UK rituximab trial project.
Thanks to a wonderful group of supporters and support which came from around the world and the generous donations from people who want to see progress in the treatment of ME, this campaign was started and soon it was on its way to initiate research which had the opportunity of overturning the way things had been done, or not been done before.
An attitude of CAN DO instead of can't do is the ethos of IiMER and this is supported by the WILL DO attitude of the Let's Do It For ME campaign.
Then one event of enormous significance occurred with a magnificent gesture from the Hendrie Foundation to support the charity’s rituximab project and its strategy of international collaboration with a pledge eventually totalling £275,000, together with an initial donation of £25,000, which allowed this research to become reality and to move things on more quickly.
The work progressed with the team at UCL where it was decided early on that a preliminary B-cell study ought to be performed in order to try to replicate the B cell findings of Bansal et al. and to determine likely responders to the drug. This was something that our advisor and the UCL department thought was necessary.
This was initiated in 2014.
PhD student Fane Mensah is now continuing this B-cell research with Dr Jo Cambridge – again funded by IiMER.
This is important work and it is being enhanced by the international collaboration which we have
encouraged and facilitated.
During this time the research team has collaborated with the researchers at Haukeland University hospital in Bergen, Norway - where work on a series of rituximab trials began to take shape as early as in 2004 – facilitated by IiMER’s Colloqiums, conferences, EMERG meetings, our strategy for international collaboration and our supporters.
After preliminary B-cell study was underway there was an internal reorganisation in the
clinical trials unit (CTU) at UCL which resulted in the principal investigator being moved away from the project
and the CTU being downsized.
When this was communicated to the charity then we began to look for alternative solutions.
The trial was advertised on our web site in order for interested parties to apply to the charity
and at the same time the charity actively continued to look for a place for the trial as the B-cell research continued.
The preliminary B-cell research paper was published in 2016 click here.
After an expression of interest from UEA/IFR it was agreed to relocate the rituximab trial to Norwich Research Park, home for the UK Centre of Excellence for ME.
In January Dr Oystein Fluge and his team will visit Norwich to work with the UK researchers in planning the trial - click here.
The original target for the rituximab trial was set by our advisor back in 2013. Having shown great vision and determination in looking at other areas of research linked to their phase III trial experiences and developing an incremental, evolutionary method of research then we feel the Norwegian Haukeland researchers have exactly the model of how good research should proceed. With the progress made by the Norwegian researchers and the increased knowledge now gained by them it will be interesting to see how the UK trial planning will progress with this new collaboration.
The objectives of the charity have been international collaboration and we are very pleased that a great deal of European collaboration in research into ME has already been occurring and continues.
To initiate the B-cell research and the UK rituximab trial has been a major effort and we owe so much to dedicated supporters from around the world.
The charity has had donations and pledges from many organisations and individuals around the world.
They have believed in the charity and the research.
We welcome support still for this research. Donations or pledges can still be made in support of the Invest in ME Research-led project.
Professor Stephen Holgate of the MRC has publicly stated the following -
“Take Rituximab – suppose it turned out in most cases to be negative, but perhaps 10% might benefit from it? You could be missing a fantastic opportunity for that minority".”
Helping Fund Our Work
Below are ways to help the charity fund the research and the work that is carried out.
Centre of Excellence
Funding of research and studentships to develop a Centre of Excellence for ME in Norwich Research Park
For the biomedical research fund to fund new research projects at the Centre or connected
For education of medical students,bursaries for young/ECR researchers and clinical fellowships for GPs
Invest in ME Research is an independent UK charity finding, funding and facilitating a strategy of biomedical research into Myalgic Encephalomyelitis (ME or ME/CFS), as defined by WHO-ICD-10-G93.3. and promoting better education about ME.
Invest in ME Research is run by volunteers - patients or parents of children with ME - with no paid staff.
Overheads are kept to a minimum to enable all funds raised to go to promoting education of, and facilitating and funding biomedical research into, ME.
The charity believes that biomedical research into ME is crucial in order to make progress in treating this disease. We also believe that education of healthcare staff, the media, government departments, patient groups and patients is to be a priority.
The charity's objectives are to initiate, maintain and augment a strategy of high-quality biomedical research into ME, to provide education about ME, and to raise awareness of the effects of the disease on patients and families.
We are a small charity but with supporters who have big hearts - and a determination to get the best possible research to be carried out to find the cause of myalgic encephalomyelitis and develop treatments.
We have links nationwide and also internationally.
Invest in ME Research is a founder member of the European ME Alliance (EMEA), a collaboration of European national charities and organisations.
The charity was also responsible for initiating the European ME Research Group (EMERG) concept, a collaboration of European researchers from major institutes.
The charity also has initiated the European ME Clinicians Council (EMECC), a network of European clinicians who will work together and share experiences of treating ME in order to establish better standards for patient care.
We do not receive, and have never received funding from government or government organisations.
We believe that we need a national strategy of biomedical research into ME to produce treatments and cures for this illness.
We have always believed that the seriousness of the situation regarding ME makes it necessary for governments to provide "ring-fenced" funding for biomedical research in to ME (as was provided for HIV/AIDS) in order to address the need for development of diagnostic tests and remedial treatments.
However, the charity does not believe in merely asking for funding - the charity has pursued of policy of raising funds itself for biomedical research in order to fund research at top UK institutes. More information is available here.
We believe that clinicians should standardise on usage of the most up-to-date criteria (currently we emphasise the Canadian Criteria) for diagnosis so that there is an agreed basis (noting that evolutionary improvement would be welcomed).
The charity organises an annual research Colloquium and conference regularly attracting delegates from over 15 countries and funds research at Quadram Institute Bioscience/University of East Anglia and University College London as well as influencing collaboration elsewhere, in UK, Europe and beyond.
Our conferences and colloquiums were organised from the beginning in order to provide a platform for research and a means of facilitating education about ME.
In order to bring the best education and research to bear on ME and to find and facilitate the best strategy of research into this disease the charity welcomes support for our work.
Our aim is to fund and facilitate research in order to establish an understanding of the aetiology, pathogenesis and epidemiology of ME. We hope this will lead to the development of a universal diagnostic test(s) that can confirm the presence of ME and, subsequently, medical treatments to cure or alleviate the effects of the illness
Our efforts are focused on setting up a UK/European Centre of Excellence for ME which will provide proper examinations and diagnosis for ME patients and a coordinated strategy of biomedical research into ME in order to find treatment(s) and cure(s).
Last Update November 2016