Biomedical Research into ME Colloquium 3


Crowdsourcing Ideas for ME

May 2013 London, UK

Invest in ME and Alison Hunter Memorial Foundation of Australia Continue Collaboration


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.

There 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.

The 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 disease.

This research meeting occurs prior to the 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 [click here] – convened by University of East Anglia and Bond University.

Alison 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 biomedical research.

Christine Hunter AM


Invest in ME

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 professionals.

Our 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).

Invest in ME - Charity Nr. 1114035


Invest in ME Alison Hunter Memorial Foundation






Support ME Awareness - Invest in ME

March 2013