2021 has been another awful year - adding more misery to the lives of so many people and frustrating attempts to return to a normality. It has affected research into ME also.

It seems like a decade ago that the Public Engagement Event day was held at the Quadram Institute in Norwich Research Park - yet it was just under two years ago, before the pandemic struck.
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 clinical trial for ME happening in UK at this time - and one of only a few in the world.
It should be the cause for widespread publicity.

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 at the public engagement day that included details of some of the different elements of 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 time of the event.
IiMER still had an enormous challenge in front of us to find the remaining funding necessary for the trial.

At the event THF made another amazing gesture by pledging to augment its previous funding pledge by agreeing to underwrite the remaining amount that was needed to be raised for the trial, if IiMER could continue to try to raise those additional remaining funds.

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.

At the time of this article the charity has managed to remove one third of the underwritten amount via a policy of careful management and great efforts from our supporters.

Al at IiMER are volunteers and no salaries are paid. All funds used are directed toward funding or facilitating research into ME.

Many of our patient supporters are house-bound, even bed-bound, and some have created crowd funded 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 grass roots movement to fund biomedical research into the disease, and thereby compensating for the meagre official funding that has been given to research into ME over the years.

So in July 2020 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 support 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 harnessing practically all elements of the Centre of Excellence for ME this 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 imaginatively described the RESTORE-ME clinical trial when she created this artwork on the Patient Day in February using details from the presentations 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 decade -

• -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

and we feel we can now focus efforts on sustaining the progress made.

"....... a hundred acorns are sown in silence by an unnoticed breeze."

References
1 IiMER Press Release July 2020

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