From the Chairman of Invest in ME/Invest in ME Research

Helping Invest in ME Research

Invest in ME Research is an independent UK charity facilitating and funding a strategy of biomedical research into Myalgic Encephalomyelitis (ME or ME/CFS) and promoting better education about ME. The charity is run by volunteers - patients or parents of children with ME.
We do not receive and have never received funding from government or government organisations.
The charity decided early on that biomedical research into ME was crucial in order to make progress in treating this disease. We also decided that education of healthcare staff, the media, government departments, patient groups and patients was to be a priority.
Our conferences and, later, our 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 London each year we welcome all support for these events as there are significant costs involved in achieving this.
On the right of the page we have a number donation buttons which direct funds to help the charity cover the costs of conferences and research meetings and the general running of the charity or to augment ring-fenced funds for specific research projects.
We thank you for considering supporting us.


IIMEC11: ELEVEN YEARS - A NEW DECADE OF RESEARCH

Kathleen McCall

In 2015 Invest in ME arranged its TENTH international ME conference - an event bringing together many of the world's most renowned scientists and researchers to London to meet with healthcare professionals and patients.
A decade of biomedical research conferences achieved - all underlining the charity's commitment to education about this disease and to biomedical research which is the only way that the cause of ME will ultimately be found.
Ten years ago Invest in ME was formed to make a change in how Myalgic Encephalomyelitis was perceived and treated in the media, by health departments and by healthcare professionals, and to educate, publicise and lobby regarding ME and the urgent requirement for public funding for biomedical research.

A decade of commitment to research, education and awareness has finally succeeded in opening up new areas of research.
A strategy of high-quality biomedical research has broken the mould of the past and a new decade now brings new and possibly decisive projects which will finally overturn the barren landscape of ME research which had been allowed to exist for too long.

Ten years ago the ME research landscape was different with no platform for regularly showcasing or encouraging biomedical research, and no funding or recognition of the need to fund biomedical research into this disease.

We mentioned last year that we can feel that real progress is underway – with the last ten years of effort by IiME and its supporters having forced real change. These have been the foundations upon which we can build a sensible policy toward ME.

The charity has two major high-quality research projects underway – probably the two most important research projects for the future of ME research in the UK - and is building a foundation for translational biomedical research into ME. This strategy has been augmented with education and participation in our research projects by medical students - enhancing their and their peers'' education about ME and building a base for the next generation of researchers. The charity has designed and facilitated the establishment of the European ME Research Group - a group of top European researchers who will collaborate and establish multi-site international biomedical research projects which will overturn the miserly funding being directed to ME research which has discouraged good research to be formulated or performed.

The charity is at the heart of European cooperation with the formation of a European ME Alliance involving 13 countries in Europe and with the potential to achieve.

The Invest in ME strategy of bringing in researchers from other fields to help and improve biomedical research into ME has been successful and well worth the effort and cost and we can witness this approach now being copied elsewhere.

Our conferences bring together patients, researchers, clinicians and healthcare staff and allow knowledge and experiences to be shared – now for eleven years.

Our research colloquiums are bringing together high-calibre international researchers – concentrating on biomedical research - that can help us understand the cause/s and pathomechanisms of ME.

The charity's proposal for a Centre of Excellence for ME is possible to achieve and it has set a target which can be reached if enough support is given.

Our supporters deserve recognition for all their support and efforts to bring change to the landscape of ME research and perception.

Due to imaginative and positive support such as the Let’s Do It for ME campaign and thanks to dedicated supporters the charity enters a new decade which promises to transition all the efforts of the past ten years into benefits for all patients and their families - and also for healthcare staff.

All of this brings momentum which then spawns changes elsewhere - by influencing others, by interesting scientists and researchers in new research areas and establishing a change in how ME is perceived.

As we approach our tenth year as a charity we may look back to some progress and a good deal of change occurring due to the efforts and determination of the charity and its supporters.

As we look forward we will continue to seek change.

If a disease is well understood then all aspects of patient care may improve whilst cures and treatments are being developed. Understanding of ME and finding the cause/s and pathomechanisms can only be achieved if research takes a clear stand of ME being a physical illness as a starting point and everything else is consequential. There are now enough clues, well presented over the ten years of IiME conferences that need to be followed up.

Clinical trials such as the phase III rituximab trial in Norway and the proposed UK rituximab trial project initiated and funded by IiME give patients hope and make healthcare professionals take ME seriously even before the trials have begun or results published.

Even the awareness of ME patients being part of proper mainstream clinical trials makes a huge difference to the perception of this disease.

This we have witnessed already.

Invest in ME have never had any doubt of ME being anything other than a physical illness and we do not believe there is sense or reason for mixing flawed psychosocial views of the disease with biomedical views under one umbrella. .

We hope that our ten years of focused approach and engaging with researchers that have the skills to help solve ME is beginning to bring results and will continue.

This is a good time to be involved in ME research as we are at the beginning of making discoveries. We are optimistic for the future as patient power has made it possible for patients to show the types of research they want and need.

We believe we can look forward, and expect even more rapid progress in the future – directed by agents of change which have been or are being created.

The IIMEC11 conference and BRMEC6 research colloquium provide unique opportunities to begin this new decade of conferences with an intent to resolve ME once and for all.

And for so many patients and their families this will not have come a moment too soon.

Welcome to IIMEC11 and BRMEC6

Kathleen McCall

Chairman Invest in ME/Invest in ME Research