One of the most striking contributions of Hippocrates is the recognition that diseases are only part of the processes of nature, that there is nothing divine or sacred about them. . . [He] remarks that each disease has its own nature, and that no one arises without a natural cause. Sir William Osler (1849-1919)
Medical scientific endeavours have unravelled the causes of infectious diseases. Most infectious diseases are transmittable between humans, but some of them are transmitted to humans as a zoonosis from animals such as mosquitoes, ticks, foxes, dogs, and cats. When we know the microorganisms that causes a disease, it is possible to prevent the disease and, in most cases, to effectively treat it.
In contrast, the biomedical aetiology or causes of non-communicable diseases are still elusive. Some of these diseases have a more or less well-known pathogenesis (biological mechanism that leads to disease) and a more or less efficient treatment. Unfortunately, some non-communicable diseases have a completely unknown pathogenesis and no effective treatment. Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is such a disease. Therefore, patients with CFS/ME, more than anything else, long for knowledge about the aetiology and effective treatment of their disease(1). Such research is lacking for a number of reasons:
- CFS/ME is the least “prestigious” disease today (2) and hence of minor interest to the medical research community. The prestige of the medical researcher depends on the prestige of the fund-raisers and of the patients for whom the research is conducted.
- CFS/ME mainly affects women. Their well-being is of less importance compared with that of men in nearly all cultures on earth. (3)
- CFS/ME is not at all a spectacular disease because it does not take lives—it just takes the joy of life from people who are biologically alive. Patients with chronic non-malignant pain consider their health-related quality of life to be as poor as that of dying cancer patients (4), but the drama and attention of premature death are lacking.
- CFS/ME is a costly disease, both for individual patients and for the nation (5,6), but such aspects are irrelevant when resources for medical research are distributed. Instead of asking which medical problems are causing the most disability and therefore need to be solved, the authorities ask who has demonstrated the type of excellence that shows they deserve to make a living in publicly funded medical research.
- CFS/ME is neither a rare nor a genetic disease. If it were, this might compensate for the lack of spectacular attributes of the disease.
- CFS/ME seldom affects affluent and powerful people, movie stars, or celebrities.
1. Söderlund A, Malterud K. Why did I get chronic fatigue syndrome? Scand J Prim Health Care 2005;23:242-7. 2. Album D, Westin S. Do diseases have a prestige hierarchy? Soc Sci Med 2008;66:182-8. 3. De Beauvoir S. Le deuxième sexe [The second sex]. Borde C, Malovany-Chevallier S, trans. Jonathan Cape, 2009 (original work published by Gallimard, 1949). 4. Fredheim OM, Kaasa S, Fayers P, Saltnes T, Jordhøy M, Borchgrewinck PC . Chronic non-malignant pain patients report as poor health-related quality of life as palliative cancer patients. Acta Anaesthesiol Scand 2008;52:143-8. 5. Reynolds KJ, Vernon SD, Bouchery E, Reeves WC. The economic impact of chronic fatigue syndrome. Cost Eff Resour Alloc 2004;2:4. 6. Jason LA, Benton MC, Valentine L, Johnson A, Torres-Harding S. The economic impact of ME/CFS: individual and societal costs. Dyn Med 2008;7:6.