- A History of Multiple Sclerosis
What does it mean to be paralyzed? What does it feel like? What if paralysis comes and goes without warning? What if nobody, least of all your doctors, can explain it to your satisfaction? What if there is no treatment? Multiple sclerosis is a neurological disease that causes relapsing and remitting paralysis, along with such symptoms as visual loss, tremor and uncoordination. Individuals afflicted with MS have had a substantial impact on medical thinking about paralysis, and their organized advocacy drove the research program that transformed the [End Page 512] illness from a mystery to a diagnosable, treatable condition. The history of this transformation shows how medicine and society are inextricably linked, even at the level of basic laboratory research.
Colin L. Talley tells the story of MS from the point of view of those afflicted with it, a notable departure from the usual histories of disease. The doctors who elucidated its nature and developed its treatments make an obligatory appearance, but Talley focuses on those who were and are affected by it. He rightly identifies the primacy of patient organizations and governments in medical science, and he relates their sometimes prickly relationship with the medical establishment.
Retrospectively diagnosing patients with various diseases, using modern diagnostic criteria, is a favorite enterprise of medical historians. Talley puts a nice twist on anachronistic diagnosis by telling one such story, that of Sir Augustus Frederick d’Esté, in the patient’s own words rather than the words of his doctors. Nor does Talley restrict his view to the illnesses of the aristocracy; he also tells the story of an anonymous French seamstress with MS who was ensconced in the Parisian hospital La Salpêtrière in the 1830s. These stories tell of the personal struggle of people paralyzed by MS, then and now.
Jean Martin Charcot, who first described the clinical features and pathology of MS, flourished in a highly politicized French hospital system that he came to rule with an iron hand. He would have been shackled in German research institutions, but Talley shows that the economic, social and political milieu of academic medicine in 1880s Paris allowed Charcot to elucidate MS. He might not have been as successful in British, German or American universities.
By 1900 physicians knew the signs and symptoms of MS, but they had to rely on the history of the patient’s illness and a careful physical examination in order to make the diagnosis. The relapsing and remitting nature of the disease made diagnosis difficult, and essentially complete ignorance of its cause led physicians to propose that it results from some constitutional or hereditary weakness. The resulting theories of degeneracy in MS carried strong eugenic overtones. At the same time, many women with MS were saddled with the incorrect diagnosis of hysteria on account of the social and cultural biases of their physicians. We can imagine the impact of such a diagnosis on a paralyzed woman in 1920, or 1970. Unsurprisingly, difficulty in diagnosis and attribution of the illness to hysteria and degeneracy produced treatments ranging from the ineffective to the openly fraudulent.
Frustrated with the medical neglect of a brother paralyzed by MS, the estimable Sylvia Lawry founded the organization that became the National Multiple Sclerosis Society in 1945. This social movement was expressly dedicated to popularizing the disease, with the expectation of expanded research and better treatments. Talley is particularly lucid in describing the way that the NMSS pressured the American government to establish the federally-funded National Institute of Neurological Diseases and Blindness in order to integrate investigations of MS. Medical scientists are naturally attracted to study diseases with reliable sources of research money, and in the 1960s federal funding was as reliable as it got. The expressed interest of patients and families, backed by political savvy and government dollars, had the desired effect of bringing some of the world’s best scientists into MS research. [End Page 513]
Tangible progress was initially slow. Through the 1970s the immunology of MS became clear, so that...