Less than 1% of the population experiences the debilitating effects of Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS). But for those who do, the condition is high impact, ongoing and life changing.
Of those thousands of people who live with the condition, that impact can be on brain function, the gut, immune, endocrine and cardiac systems. What most people who know anything about the disease – or people with it – know is that it results in persistent disabling fatigue, muscle and joint pain, headaches and more. The severity can wax and wane. It is frustrating, confusing and usually only diagnosed after long periods of ongoing illness.
Dr Heidi Nicholl, CEO of Emerge Australia – the national patient organisation representing people living with ME/CFS said: “It is a condition which is still widely misunderstood by the general community and by clinical professionals,” she said.
The challenge for medical professionals is that there still is no universally accepted definition, and diagnosis relies on a process of elimination of all other possible causes of the symptoms that patient has over time.
Research into the condition has been limited and funding scarce. This is common for lesser known medical conditions – just as it is for less profile (or more challenging) social problems.
Over the past decade, what this has meant on the ground is that government has been able to support one research project, one scholarship and two research fellowships through the National Health and Medical Research Council (NHMRC). The ME/CFS research ‘sector’ (such that it is) can be described as small, fragmented and under-resourced for its task.
It is into this space that philanthropy can step in and pick up the challenge - where government and public funding, with its imperative of giving funding priority to the problems that affect the most (or cost the most) cannot always meet the need.
The Judith Jane Mason & Harold Stannett Williams Memorial Foundation (the Foundation), is one of the larger charitable trusts of the 600 or more managed by Equity Trustees. It was established in 2003 by Judith Mason, who wanted to honour the memory of her father Harold (‘a most intelligent, wonderful and charitable man’) as well as do something to support ongoing research into a condition she herself experienced. The goal of The Mason Foundation is to achieve enduring, positive impact in the areas of Chronic Fatigue Syndrome and Alzheimer’s disease through funding medical research principally into the causes, prevention and/or management of these diseases.
Judith died in 2013 but her commitment lives on through the Foundation. Over the past decade, the Foundation has distributed more than $10 million in research grants and fellowships and is a leading (if not the foremost) funder of ME/CFS research in Australia. Every year it distributes another $1 million for research and in 2019, the Foundation committed $1 million over five years for a specific, potentially ground breaking, project.
The $1 million commitment is the single largest project funding from this Foundation Equity Trustees has ever committed to over the 130-year history of managing philanthropic and charitable trusts.
The grant will support a partnership between La Trobe University, Emerge Australia and the Australian Red Cross Blood Service to establish the first Australian Patient Registry and Biobank for ME/CFS.
The innovative project to create the Biobank will make use of existing Red Cross resources and infrastructure and provide access to blood samples and DNA for researchers.
The project funding brings together the three highly regarded organisations, each with their own perspective and body of knowledge, to establish the first Australian Registry and Biobank for ME/CFS, and link research teams from several national institutions as well as consortia based in Europe, the United Kingdom and North America – all working towards locating causes and potential treatments for the disease.
In a draft report to submitted to the NHMRC Consultation on the condition, the Chair of the Mason Foundation’s Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Advisory Committee, Professor Peter Schofield AO wrote of the project:
This represents a unique opportunity to accelerate ME/CFS research globally and will establish a resource that encourages new researchers into the field. More research will inevitably lead to a greater understanding of the condition along with its causes and the mechanisms that lead to its debilitating symptoms.
A high quality single biobank may offer cost and research efficiencies as well as assist collaboration across the different ME/CFS research fields.
International engagement can improve both the quality of research undertaken in Australia, and the uptake of the latest international research in Australian health policy and practice. International collaboration activities are a key strategy for ensuring that Australia contributes to, shares in and benefits from, the work of the global research community.
The decision for the Foundation to make this funding available came after significant thought and analysis. With a little over a third of all philanthropic granting annually distributed by Equity Trustees going towards medical research, the aim is always to do more than simply distribute money – even while it is much needed – including in this less understood area of investigation.
Over a two-year period, Equity Trustees reviewed how it could increase the impact of the funding investment into ME/CFS with the assistance of the Nous Group. With their assistance, ME/CFS landscape was mapped and the viability of the idea of the ME/CFS biobank and a patient database was explored. The literature was reviewed on ME/CFS research and biobanking in Australia and internationally, and an extensive series of interviews and workshops with key stakeholders, including ME/CFS consumers, researchers and biobank experts was undertaken. The result was a report, which now forms the roadmap for the Mason Foundation approach to supporting action in this area.
With funding in mind, partners were sought via a widely publicised EOI and application process reaching out to researchers in the field across Australia to find the best collaborative structure and partnership for the Biobank and patient registry. The final result was Latrobe University, Emerge and the Red Cross service, brought together and able to tap into the Foundation’s network of connections and expertise in this area.
Head of Microbiology at La Trobe University, Professor Paul Fisher, whose team are investigating an identified defect in the mitochondria of ME/CFS patients, is looking forward to the opportunity to collaborate internationally – and ultimately, at the results that may be the outcome of the project.
“Here at La Trobe we have discovered a specific defect in the mitochondria – the ‘powerhouse’- of the cells of ME/CFS patients and are working towards a simple diagnostic blood test,” Professor Fisher said.
“Our research is part of a global research effort to better understand the disease process, to develop diagnostic tools and to discover effective treatments. In many studies of ME/CFS, the sample groups are small. But by creating the Biobank and bringing the various research teams together we can share the work – and share the data. Eventually we will also discover what we hope will be new ways to address this debilitating condition,” Professor Fisher said.
In the meantime, the Foundation will continue to fund annual research grants (the next open grants round due to open in September 2019). The strategy review has led to a shift in focus to have less individual grants, but each grant to be higher in dollar amount and to come with a longer term funding commitment. Going forward, research grant applications leveraging the newly created patient registry and biobank resources will be a priority.
Jodi Kennedy, General Manager, Charitable Trusts and Philanthropy, Equity Trustees said: “This project is a demonstration of collaboration by a research consortium representing multi-disciplinary teams and Australia’s peak consumer body, Emerge. Our aim, as the stewards of philanthropic funds, is to maximise positive social impact in our community. This is a great example of our ability to convene collaborations towards a shared outcome – in this case for people with ME/CFS.”
For more information about this project, or the Mason Foundation, contact Briar Stevens or Cecilia Gason from the Equity Trustees Charitable Trusts and Philanthropy team.