To raise awareness of ME, and promote collaboration,
innovation and foundations for a clearer strategy of
biomedical research into ME, Invest in ME and the Alison Hunter
Memorial Foundation of Australia continue the collaboration which has
been a feature for several years, and which established
the Clinical Autoimmunity Working
Group which met in London in May 2012.
Myalgic Encephalomyelitis (ME - though also referred to as chronic fatigue
syndrome or ME/CFS) is known to clinicians as a challenging and worrisome
condition. Patients have died from this disorder and many clinicians have
personal experience of these terrible outcomes.
is likely to be some variation in the clinical spectrum causing some
difficulty in determining the aetiology. The
obscure nature of the condition has permitted scepticism and even misguided suggestions it is a condition
perpetuated by faulty illness belief and deconditioning.
recent discovery by Norwegian oncologists, Oystein Fluge and Olav Mella
and their co-workers has initiated a debate about autoimmunity as a
contributing factor in this disorder.
The challenge now is to rigorously embark on a new scientific
research endeavour and to explore the role of immunological and neurological
sciences in understanding the pathogenesis of ME.
To achieve continued progress in understanding and treating this disease we must establish collaborations between biomedical researchers who can agree a clear strategy of biomedical research.
Crowdsourcing can uncover some of the answers to ME in a
much quicker time frame.
Therefore, to attempt to increase collaboration and awareness and
to encourage new researchers to the field IiME and AHMF are arranging a research meeting
which brings together international researchers in order to crowdsource ideas on ME research.
Representatives from seven countries are already attending.
We welcome ideas and a pro-active approach to collaborating and researching
This research meeting occurs prior to
8th Invest in ME International ME conference in London,
which takes place
on 31st May.
Since its inception Invest in ME have campaigned for biomedical research into ME.
IiME began arranging a biomedical research conference in its first year and have continued them ever since – mostly funded by the charity but with help from some wonderful supporters and some good friends.
At the IIMEC8 conference in London the focus is now on ME becoming a mainstream research area.
There are representatives from most of the main biomedical research initiatives now occurring throughout the world.
In 2010 AHMF organised a Symposium in Brisbane (click
here) which was a foundation research meeting for a biomedical research
into ME colloquium.
In 2011 IiME organised a “corridor conference” -
click here – aimed at getting researchers into the same room to brainstorm
ideas on ME research.
In 2012 the Alison Hunter Memorial Foundation of Australia and Invest in ME worked together to arrange and fund the Clinical Autoimmunity Working Group
here] – convened by University of East Anglia and Bond University.
Hunter Memorial Foundation
People with ME face
enormous obstacles to access health care. Among the impediments over
past decades has been research which has shifted emphasis to fatigue and
fatigue states with scant regard for the myriad yet distinguishing
neurological, autonomic, and gastrointestinal features of ME. Semantics
and biased attributions continue to deny the severely ill, both child
and adult, the right to care which addresses their acute and chronic
medical needs without fear.
The Alison Hunter Memorial
Foundation was established in 1998 through the initiative of the Public
Interest Advocacy Centre, Sydney. The Foundation has a primary interest
in the medical, legal and social needs of people with ME and the
clinical documentation of severity.
The Foundation supports
There is an urgent need for
a coordinated strategy of biomedical research into myalgic
encephalomyelitis (ME). Good quality collaborative research efforts lead
to understanding of the disease and better patient care and education of
health care professionals.
The approach to treating ME must reflect the latest biomedical research
evidence and ME needs to be accepted as a mainstream disease requiring
major attention from the medical profession and research institutions.
Patients need access to knowledgeable ME consultants who can make
correct diagnoses using proper guidelines and need to understand the
disease in its all phases.
Invest in ME is a UK charity established in 2006 by ME patients and
parents of children with ME. The charity was
set up with the objectives of making a change in how ME is perceived and
treated in the media, by health departments and by healthcare
efforts are focused on setting up a UK Centre of Excellence which will
provide proper examinations and diagnosis for ME patients and initiate a
coordinated strategy of biomedical research into ME in order to find
treatment(s) and cure(s).
in ME - Charity Nr. 1114035
Invest in ME
Alison Hunter Memorial