The impending closure of the Chronic Fatigue Syndrome Research Foundation (CFSRF) following the unexpected death of its driving force Anne Faulkner on 7th November 2013, marks the end of a chapter in the history of ME/CFS research. Founded in 1992 by Anne and her late husband Hugh, the CFSRF was – like ME Research UK itself – one of the very few organisations anywhere in the world dedicated to funding biomedical research into ME/CFS.
Initially called the ‘Persistent Virus Disease Research Foundation’ (reflecting the focus on post-viral aetiologies of myalgic encephalomyelitis in the 1980s and 1990s), the charity subsequently incorporated ‘Chronic Fatigue Syndrome’ into its title. Its charitable objects – relating to “persistent virus disease and allied disorders, particularly in the disease known as ME” – remained the same, however, as did its commitment to scientific investigation of the underlying causes of the illness.
In its lifetime, the foundation’s total research spend was £1,970,000 on 20 different projects, from which 20 papers were published in the scientific literature. The bulk of its projects (15) were initiated in the decade 1992–2002, and those focussed on virus, muscle and mitochondria; indeed, the organisation was instrumental in funding some of the early work of Prof L Archard, at Imperial College London, and the late Prof Wilhelmina Behan at the University of Glasgow. Later, from 2003 to 2010, the CFSRF targeted most of its funding (£961,000) towards studies of gene expression in ME/CFS at St George’s University of London, and it was fortunate to be able to rely on wealthy independent backers to fund this expensive programme of research. While the putative ME/CFS ‘gene signature’ discovered was eventually found to be too insensitive for use as a broad diagnostic test for the illness, the attempt was valiant, and the CFSRF deserves credit for supporting this ambitious programme of work.
The CFSRF was a pioneer in its time, and its success, particularly in its first decade, was due to the street-level fundraising efforts of patients, their families and friends who wanted, simply, to get biomedical research off the ground. The landscape for scientific research charities has changed dramatically since 1992 – and so have methods of raising funds. Yet, commitment – the ability to keep going forward through the ups and downs – is as vital as it always was. Before she died, the anthropologist Margaret Mead said, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has”. Anne and Hugh understood that, and the CFSRF and its work is a fitting testament to their vision and commitment.