There can be a predictability about annual awareness campaigns, for whatever cause.
Often there is a danger that these become as much concerned with publicising the promoter as the cause itself.

For ME, raising awareness is often about publicity surrounding demands for change or action, demanding others act or alter policies.
Progress will not come merely from sound bites in the media or from letters to ministers or health services or more videos - all cathartic actions that have been tried for years.
However much awareness may be raised, there is one incontovertible fact that remains - we still need to perform research in order to find treatments or cures.

Without research we remain in a world without the one factor that would overcome stigma, misinformation and flawed policies - scientific evidence.
And that leads to non-existent or poor services, apathy and indifference, and sometimes negligence - and an easy excuse to maintain the ignorance.

Of course, the intent of the charity is to make change happen, to bring hope for people with ME and their families - and awareness is part of that process.
But publicity for the charity for its own sake is not an objective, but rather to raise awareness that we need evidence from research that allows us to provide hope instead of hype.

Because we must acknowledge from years of experience that we cannot wait and expect others to act - we have to start some things ourselves and demonstrate what, and how to do things.
The supporters we have who have made great strides in raising awareness and funds for research have, of course, achieved a great deal with their amazing efforts year after year. These have allowed changes to come forth.
Yet, for an awareness month for ME, the core requirement needs to be highlighted.
In this way we also can bring attention to the actual issues that exist with ME.

Objective: Sustaining and Developing the Foundations of Research into ME

As IiMER chairman Kathleen McCall has stated previously, in order to treat and cure ME we need the infrastructure as well as funding.
A foundation for sustainable research needs to be created and we must recognise that, in its absence from official policies, then we are forced to continue developing this ourselves.
To develop research we need a strategy - which is why we have proposed and funded the idea of a Centre of Excellence for ME in UK and Europe - a hub for development of research ideas and collaboration.
We have spent a considerable amount of time and effort in promoting international collaboration, especially in Europe.

Sparse resources are currently allocated for ME, still so in the post Covid-19 era, so cross-European projects are necessary.

Europe has the resources to build and develop capacity and resources required for an appropriate level of research and services for ME patients.

Yet without research being performed and an infrastructure being developed then there will be no services, no treatments and possibly no change in the stigmatised perception of ME - making advocacy even more difficult and less likely to succeed - even despite the opportunities afforded by the funding directed to covid.

What are we doing

Our strategy has been to concentrate, as best as we can, on setting up some of the key building blocks that would create sustainable and permanent change in how ME is researched and treated.

  • finding, funding and facilitating biomedical research into ME in a variety of ways
  • creating solid foundations for a research programme on ME
  • 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

ME Awareness Month

In May awareness month we invite support to help us continue to build on the above elements which will facilitate rapid progress in improving research and treatment of ME.

We invite support for the only May Awareness Month theme that makes sense -

Last Update April 2022