Invest in ME Research is an independent UK charity facilitating and funding a strategy of biomedical research into Myalgic Encephalomyelitis (ME) as defined by WHO-ICD-10-G93.3. and promoting better education about ME.
The charity is run by volunteers – patients or parents of children with ME. Like their growing number of supporters, they 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.
Invest in ME Research has links nationwide and also internationally; is one of the founding members of The European ME Alliance of like-minded organisations; and organises and hosts an annual international public ME conference and a colloquium by invitation for biomedical researchers working currently or potentially on Myalgic Encephalomyelitis (or ME/CFS).
Invest in ME Research wish to establish a Centre of Excellence for ME – a centre which would exist to bring discovery, knowledge, and effective treatments to patients with ME and possibly, in future, other illnesses that are caused by acquired dysregulation of both the immune system and the nervous system.
The proposed centre would become a Centre of Excellence in the treatment of ME in Europe and would attract researchers, physicians and healthcare staff from around the UK and Europe and USA.
It would also allow other Centres of Excellence to collaborate with each other.
The proposed Centre of Excellence will be based at Europe’s largest grouping of scientific institutes – Norwich Research Park. The centre will form a hub for a strategy of research into ME in UK and Europe, linking in other academic institutes and researchers, sharing knowledge, forming collaborations, training medical students, improving education and generally fast tracking research into ME.
The clinical arm of the Centre of Excellence was delayed by NHS reforms disbanding PCTs and restructuring with new personnel through the new CCGs. The research strategy was enabled to begin by samples kindly provided by patients of Dr. Amolak Bansal, leader of the specialist service in Surrey, and by the charity raising the funds with supporters and the Let’s Do It for ME campaign.
The 3-year foundation study of the research strategy began in 2013 by investigating the possible role of gut hyperpermeability (leaky gut) in ME. This work is led by Professors Tom Wileman and Simon Carding at the Institute of Food Research, working with PhD student Daniel Vipond and former medical student, now qualified doctor, Dr. Navena Navaneetharaja.
Research on the role of B-cells in ME, prerequisite to a clinical trial of the monoclonal antibody Rituximab, began in 2014 and Invest in ME Research announced shortly after that it was felt worthwhile to extend this research, which is being led by Dr. Jo Cambridge at University College London, with PhD student Fane Mensah, and with Emeritus Professor Jonathan Edwards acting as Advisor to the charity on a clinical trial.
International collaboration is facilitated by the annual Invest in ME International Conference and Biomedical Resarchers into ME Colloquium, and now also by the European ME Research Group formed by the European ME Alliance, which is a member of the European Federation of Neurological Associations.
So the work is underway to lay the foundations for a better future for people with ME. The Centre will continue to perform translational biomedical research on ME, conduct clinical trials, validate treatments, and will help to bring lives back to millions of patients currently left without any healthcare. Next steps..
May 2016 marked 10 years since Invest in ME registered as a charity.
They said, “We feel the best way to celebrate our 10 years anniversary is to try to finish what our supporters have helped us begin. To begin a new decade of Invest in ME research we are announcing our new campaign to establish the Centre of Excellence on firm footings and fast track biomedical research into ME. We invite people to support our Centre of Excellence proposal.”
They published their new poster in the Journal of Invest in ME Research included in the pack for delegates at their 11th Invest in ME Conference held on 3rd June 2016 and have since launched a website for the Centre of Excellence with easy ways to show support. Let’s C Research! #CofEforME #LetsCresearch