European Infrastructure Development
As stated in the IIMEC15 welcome message, from IiMER chairman Kathleen McCall,
in order to treat and cure ME we need the infrastructure as well as funding.
Sparse resources exist for ME, especially so in the Covid-19 era, so cross-European projects are necessary.
Europe has the expertise to develop this capacity and resources.
It has been evident for some while that we must create a foundation for sustainable research and we need to recognise that we are forced to start this ourselves in the absence of official support.
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.
As mentioned in previous months since the conference week in May, to continue to build these foundations two workshops have been organised by Invest in ME Research for November.
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 in Amsterdam in 2020 to assess the status of the working groups that had been set up and plan for the future.
European ME Research Group (EMERG)
EMERG brings together the foremost European ME researchers in order to establish an understanding of the Aetiology, Pathogenesis and Epidemiology of ME.
EMERG was intended to create a vision of collaborative European research to increase biomedical research into ME and provide an opportunity to make huge and rapid progress in ME research.
Many of the researchers have been meeting for years in the Invest in ME Research International Biomedical Research into ME Colloquiums events that have fostered collaboration, built new ideas and shared knowledge. The charity has emphasised world-wide international collaboration.
It has been increasingly evident, though, that we really do need a European base of research.
EMERG is currently working on research proposals including the post-Covid-19 situation.
EMERG is supported by the European ME patient groups and charities within the European ME Alliance (EMEA) to provide a powerful combination of campaigning, raising of awareness, building new research and accumulation of data based on collaboration and sharing of experiences and knowledge, which would allow rapid progress in the building up a strategy of high-quality research into ME.
European ME Clinicians Council (EMECC)
Invest in ME Research formed the European ME Clinicians Council (EMECC) in collaboration with leading European clinicians who are involved in treating people with Myalgic Encephalomyelitis.
This followed an American initiative that was started by Dr Lucinda Bateman and Mary Dimmock.
The inaugural meeting brought together clinicians in the field of ME to review the current state of knowledge, to present and discuss the latest initiatives, and to foster collaboration.
We wanted this to become a formal group that will work with the American initiative and be supported by European patient organisations - and crucially interact with European researchers in EMERG.
The EMECC initiative was designed to overlap with the EMERG meeting - bringing researchers and clinicians together and this is part of the European strategy created by IiMER and which, with the European ME Alliance, forms the nucleus of making rapid progress in research, education and advocacy for ME.
The group has continued to meet to develop the network so that it could improve the knowledge of clinicians in Europe and act as a focal point for healthcare agencies, doctors and media outlets who wish to learn more from experienced clinicians about ME.
European ME Alliance (EMEA)
Invest in ME Research is one of the founder members of the European ME Alliance (EMEA).
The European ME Alliance is a grouping of European organisations who are involved in supporting patients suffering from myalgic encephalomyelitis (ME or ME/CFS) and are campaigning for funding for biomedical research to provide treatments and cures for ME.
EMEA now consists of patient organisations and charities from sixteen European countries, and increasing in numbers.
Through these initiatives we hope that we can expedite progress in research and treatment of ME.
This provides a powerful combination of campaigning and raising of awareness, building new research and accumulation of data based on collaboration and sharing of experiences and knowledge, which will allow rapid progress in the building up a strategy of high-quality research into ME.
FURTHER REFERENCES
A Strategy for Research, Treatment and Advocacy for ME
Invest in ME Research has been facilitating research collaboration between individuals and organisations and are funding major research in the UK.
The charity's success in arranging fifteen annual international biomedical research conferences and ten international biomedical research colloquiums and initiating
an international young/early career research network
demonstrates its determination and commitment to find a cause or causes for this devastating disease.
IiMER has European connections and originated and facilitated the formation of the European ME Research Group (EMERG) and and the European ME Clinicians Council (EMECC) and facilitates collaborative links to other researchers and institutes in Europe and Australia and USA.
The foundations are already in place to advance science and provide the promise of better treatment and possible restoration of function and lives back to a section of the community who have received very little help in the past.
Please help us to find the cause of this disease and develop effective treatments to permit patients to regain their lives.
