Neil Abbot, Director of Operations, ME Research UK
The AACFS conference of January–February 2003, held in Washington DC, contained several valuable contributions towards the understanding of ME/CFS. It differed from previous meetings in giving prominent coverage to the clinical overlaps between ME/CFS and both fibromyalgia and multiple chemical sensitivity. The clinical day — aimed at the education of clinicians — included two useful overviews of the problem (by Drs Jason and Lapp), and several discussions of available treatments for specific symptoms. On the science, the excellent overview of the biochemistry by Dr Suhadolnik explored the biochemical processes that are altered in ME/CFS, while a range of presentations illustrated several aspects of ongoing biomedical investigations. These included the work by Dr Suhadolnik’s group at Philadelphia into dysregulation of the 2-5A/RNase L pathway, particularly the potential use of RNase L fragments or their ratios as biomarkers of the illness; the observations by Dr Kennedy (Scotland), Dr Racciatti (Italy), and Prof Pall (Washington State) of increased oxidative stress (which, when added to previous reports, imply that increased oxidative stress is one of the most well-documented changes in ME/CFS); the phenomenological reports by Dr Natelson (New Jersey) of spinal fluid abnormalities, and by Dr Spence (Scotland) of abnormalities of acetylcholine clearance in the skin; and the nitric oxide/peroxynitrite theory which is now receiving considerable attention as a viable aetiologic theory of ME/CFS (Prof Pall, Washington State). In addition, the oral presentations by Dr Behan (Scotland), Dr Gaffney (Minneapolis), and Dr Vernon (Atlanta), describing their results from gene expression profiling, raise the possibility that objective measures of biochemical changes might be provided by microarray technology.
These studies, and other biomedical investigations in the past two years, illustrate the progress that can be made if researchers have the necessary impetus and funding. With increasing recognition of the limitations of the diagnostic construct ‘CFS’ — exemplified by the recent publication of the new Canadian definition, and the ongoing attempts to improve the sensitivity of the 1994 (Fukuda) definition — and growing international consensus around the need to identify clinically relevant subcategories within it, attention is turning (finally) from the non-curative psychosocial ‘coping’ strategies towards explaining why morbidity is so high for so long in many people with ME/CFS, and uncovering the cause of the illness. As the hoo-ha subsides, the real target comes into view.
Despite these advances, biomedical research into ME/CFS has been meagre, given that its prevalence (somewhere between 200 and 400/100,000 in developed countries) exceeds that of several illnesses which nevertheless have a higher public profile, attracting far more sympathy and resources. The number of poster presentations and oral presentations at the 2003 AACFS conference (44 and 47 respectively, down from 72 and 41 respectively in 2001, and 57 and 46 respectively in 1999) reflect the relatively low level of medical and scientific interest in this illness. There are probably many reasons for this, including the controversial nature of the field, the clinically-diverse nature of the illness, and an intellectual inertia among clinicians and work-a-day scientists. However, the central problem is surely lack of funding, especially over the medium to long term.
In developed societies, class I funding — from national government and central research sources — is scarce, competitively allocated, and subject to many competing priorities. Recent events surrounding ME/CFS funding via the Medical Research Council in the UK, and the impending decline in such funding by the NIH in America, have illustrated the difficulties researchers face in obtaining and maintaining class I support. In addition, given the limitation on resources, it is unlikely that ‘central’ funding alone can allocate to ME/CFS research more than a very small portion of a finite cake. For these reasons, there is a growing realisation that for biomedical investigation to prosper, funding will have to come from not-for-profit organisations and charities, such as ME Research UK, and private benefactors. In effect, the funding strategy for ME/CFS research will have to mirror that of cancer research, which obtains 85 to 90% of its funds from private sources. A daunting thought. Yet, privately-funded research — bringing fresh ideas and new blood — is commonplace in other chronic illnesses, and ME/CFS need be no different. In truth, there is no alternative if we want biomedical research to move forward (in Churchill’s words of 20th August 1940), “
in full flood, inexorable, irresistible, benignant, to broader lands and better days”.
Download the full report here: Broader Lands and Brighter Days (pdf 412 KB)