ME awareness is often about publicity surrounding demands for change or action.
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.
Yet publicity for its own sake is not an objective of the charity – and there is a vast difference between hope and hype.
This year we thought that ME Awareness Month has to include awareness of what we are doing, why we are doing it and, importantly, what are the benefits of what we are trying to do?
In this way we can bring awareness of the actual issues that exist with ME.
Despite almost sixteen years of constant work the charity may be only recognised for its international conference week events – with little awareness of what else the charity has done or is doing on a daily and weekly basis – and with the efforts and achievements of the charity’s supporters having gone by, unnoticed by many.
But those acorns have developed into a forest of initiatives and ideas from the charity that have been accepted and in progress.
The charity is run by volunteers – patients or parents of children with ME. No salaries, no careerists, never in receipt of any government funding, and not controlled by outside influences – just driven by wonderful supporters.
An interesting summary of the work of the charity and supporters was provided a while back by the amazing Let’s Do It For ME (LDIFME) team in this article – click here
In May awareness month, as we explain below some of the things the charity is doing, we invite support to help us build on these elements which will facilitate rapid progress in improving research and treatment of ME.
In particular, we invite support for our May Awareness Month theme – RESEARCH
Objective: Sustaining and Developing the Foundations of Research into ME
As stated in IiMER chairman Kathleen McCall’s message for the 2020 Invest in ME Research International Conference Week (events that were subsequently disrupted due to the pandemic), in order to treat and cure ME we need the infrastructure as well as funding.
Progress will not come from sound bites in the media or from letters to ministers or health services. We have to 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.
So IiMER has been spending a considerable amount of time and effort to promote international collaboration, especially in Europe.
Sparse resources are currently allocated for ME, especially 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 – 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.
IiMER is finding, funding and facilitating biomedical research into ME in a variety of ways and is focused on –
- 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