Invest in ME ResearchChristmas/New Year Fund Appeal Advent Calendar
Colloquiums/Conferences - Invest in ME Research
"This is the fourteenth annual international ME conference that this small UK charity has organised - a fact which surprises us on many levels.
A surprise that we have managed to continue to arrange these conferences, and even increased their scope - despite relatively few resources.
A surprise that there really has not been the progress in research that we believed would and should have come after all these years.
A surprise that it has taken so long before any major national agency has taken this disease seriously - something that the National Institutes of Health (NIH) in USA are now doing.
A surprise that many other national research councils, especially in UK, are lagging so far behind and have ignored this disease for so long.
Yet we wonder where would be we now had it not been for the dedication and efforts of our supporters throughout these years who have made it possible for us to redirect research toward biomedical and change things to force a new direction for ME."
"These are not just mere words for us - not a fresh update to leaflets, not a soundbite to pacify ME patients.
During all these years, the charity has consistently and unambiguously campaigned for dedicated biomedical research into ME and the necessary
funding to achieve it."
"The charity has also facilitated the establishment of foundations for a sustainable strategy of biomedical research into this disease.
Our plans to develop a Centre of Excellence for ME have captured the imagination and is clearly seen as the way ahead - and good progress on this foundation has been made, although with more resources the charity could expedite this for
the benefit of all patients."
“Collaboration has been at the heart of the charity's innovation since 2007 when our strategy of bringing the best researchers from around the world together was formed. The acceptance of this vision and collaborative strategy has matured to the point where now the NIH is taking a lead in forming centres and collaborative strategies.
The research Colloquiums now attract researchers from around the world to a meeting where they are free to discuss, share ideas and collaborate.
Collaboration and working together have been themes for our Colloquiums - with real international cooperation forming which can only lead to a better future for patients than would otherwise be the case."
"To support this strategy the charity has continued to arrange the international ME conferences
that have provided a platform for education about ME - with DVDs produced of all the conference presentations which have formed
a historical record as well as providing knowledge of the latest research."
"Our original conferences have now developed into a unique conference week in the heart of London
with delegates and colleagues and friends coming from over twenty countries around the world.
ME Conference Week now includes -
-a conference for young/early career researchers;
-a dinner where young researchers can meet more experienced scientists;
-a two day closed research Colloquium where researchers can share ideas and discuss and plan and collaborate;
-a researchers' dinner where more discussions can be had;
-a pre-conference dinner which allows a special gathering of researchers, clinicians, media folk, politicians, ME support
representatives,carers and patients to interact;
-a public international conference;
-a post-conference dinner which allows researchers and patient groups to discuss further after the main events
have finished and plan the next steps;
-and an annual general meeting for the main European collaborative patient organisation."
"A small charity with wonderful supporters has achieved this.
When people view charities as being "the largest" or "the main" organisations it is as well first to determine how those adjectives are measured.
Is it by income, by number of staff, by the amount of media presence?
Or by the amount of income spent on research, or on the least spent on admin and salaries, or on the achievements and ideas that actually are realised."
"In the recent parliamentary debate on ME, Invest in ME Research produced a document which summarised the status of ME. It also laid out a bold vision for research - proposing that £20 million be allocated every year for five years to kick-start biomedical research and support the foundations that this small charity has laid.
It is this vision that a small charity and dedicated supporters brings to the world of ME.
Conference Web Site
Thinking the Future London 2019
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