Invest in ME Research
Christmas Fund Appeal Advent Calendar
Clinical Trial for ME
In an awful year we are highlighting some of the good things that are still with us.
In February, in what seems a decade ago, the Public Engagement Event day was held at the Quadram Institute in Norwich Research Park.
The day highlighted the planned clinical trial being conducted at the Quadram Institute. The trial is called RESTORE-ME.
It is perhaps not realised that this clinical trial is the only one happening in UK at this time. It should be the cause for widespread publicity.
It is certainly the largest of the very few occurring in Europe – and one of only a handful occurring in the world.
Also newsworthy is that the trial and the research in Norwich Research Park is funded by patients, carers, friends of people with ME - the supporters of Invest in ME Research.
This trial will answer scientific questions, develop further the infrastructure to support future research into ME and examinations of people with ME.
The Quadram Institute filmed the presentations that included details of some of the different elements of the trial.
At the time of the event the IiMER had not found all of the funding necessary for the trial.
The charity had already received an enormously generous pledge from The Hendrie Foundation (THF) for the research and we had raised over two thirds of the cost but were still some way short.
At the event THF pledged to augment its previous funding pledge by agreeing to underwrite the remaining amount that was needed to be raised for the trial.
This great philanthropy has typified the support that we have received - making the impossible become possible in order to help the charity to pursue its objectives.
Many of our patient supporters are house-bound, even bed-bound, and some 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.
In July the charity was able to announce the funding of almost £700,000 for biomedical research, including the clinical trial, to be carried out in Norwich Research Park - demonstrating what a charity with amazing supporters can accomplish.
The project has created other valuable elements -
-cooperation between the institute and the university in research into ME;
-involvement of the clinical trials unit (CTU);
-collaboration with consultants in the university hospital;
-collaboration with the local ME clinic to recruit a cohort of patients using up-to-date guidelines;
-creation of modern outcome measures using technology to assist;
-young researchers coming into the field of ME research;
-European collaboration between EMERG researchers;
-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.
All elements of a UK/European hub - a Centre of Excellence for ME. The funding for research and associated supporting activities that has been invested by the charity now exceeds £2 million.
By 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 clinicians of the European ME Clinicians Council (EMECC).
Rebecca Osbourne beautifully and imagintatively described the RESTORE-ME clinical trial when she created this artwork on the Patient Day in February using details from thepresentations as they were given
It has been evident for some while that we must create a foundation for sustainable research and we have had to recognise that we are forced to start this ourselves in the absence of official support.
With or without huge publicity this is what IiMER and our supporters have done over the last ten years -
and we feel we can now focus efforts on sustaining the progress made.
- -creating solid foundations for a research programme on ME
- -concentrating on solving scientific questions relating to ME
- -finding treatments that are based on research evidence
- -raising standards on all levels of patient care
- -facilitating European and international collaboration