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

Helping Invest in ME Research

Invest in ME is an independent UK charity run by volunteers. 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.
To the right 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.


IIMEC10: TEN YEARS - AGENTS for CHANGE

Kathleen McCall

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.

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.

Ten years ago there was next to no patient interaction with researchers.

Ten years ago there were calls to fund biomedical research into ME which were ignored or fell on deaf ears, for various reasons.

During the years the calls for progress continued.

As we approach our tenth conference and our tenth year as a charity we can feel that progress is underway – and over ten years IiME and its supporters have created the agents of change which have helped this.

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 which will allow a strategy of further research and education of medical students to be enhanced.

Our conferences have brought together patients, researchers, clinicians and healthcare staff and allowed knowledge and experiences to be shared – for ten 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 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 replicated elsewhere.

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.

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.

And our supporters no longer have to wait for establishment funding bodies to listen to what patients need and want in terms of research.

Due to imaginative and positive support such as the Let’s Do It for ME campaign and thanks to dedicated supporters the charity has been able to forge its strategy and lead the way forward for others to follow.

And these agents for change themselves spawn changes elsewhere - by influencing others, by interesting 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 IiME/UCL UK rituximab trial 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.

These trials also give a chance to find out the types of patients that respond to this treatment and thereby help other researchers in finding objective ways of selecting patient cohorts for future research.

Invest in ME have never had any doubt of ME being anything other than a physical illness.

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.

There can be no returning to the old, failed ways of treating and researching ME, and no sense in, or reason for mixing the failed psychosocial views with biomedical views under one umbrella.

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 conference and research colloquium provide a unique opportunity to continue and regenerate these agents of change.

Welcome to IIMEC10 and BRMEC5

Kathleen McCall

Chairman Invest in ME/Invest in ME Research