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1 Introduction
Pages 17-28

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From page 17...
... It is often only after someone is diagnosed that they recall their history of episodic clumsiness, deep fatigue, or blurred vision. Although multiple sclerosis sneaks up on individuals, it is fairly predictable in populations.
From page 18...
... As the number of damaged nerve cells increases, the body loses its ability to perform the functions controlled by these cells. This attack on the myelin sheath is believed to be orchestrated by bloodborne immune cells that invade the brain through the blood-brain barrier, the physical-chemical barrier that surrounds the brain and normally protects it from foreign and toxic substances circulating in the blood.
From page 19...
... THE U.S. NATIONAL MULTIPLE SCLEROSIS SOCIETY The National MS Society (the MS Society)
From page 21...
... To be approved, a study must be timely and of national significance. While this study is clearly significant for MS patients and the research community, its value also lies in its potential as a model for the development of similarly broadly based strategic research plans for other health fields.
From page 22...
... 1973 National Acivisory Commission on Multiple Sclerosis This commission laid out a detailed set of recommendations, to the point of recommending how much the MS Society should spend on specific projects.4 Among other proposals, it recommended that $150,000 be spent in 1975, $300,000 in 1976, and $300,000 in 1977 for research on the demyelination and remyelination process of nerve cells in culture; $10,000 be spent to disseminate information to physicians and nurses on the prevention and treatment of bedsores; and $225,000 be spent in 1975, $400,000 in 1976, and $500,000 in 1977 for support of the first comprehensive treatment center devoted to the prevention of complications and disabling effects of MS rather than research on the disease process (all dollars are 1975 dollars)
From page 23...
... Although that report strongly supported the MS Society's research programs, there was some sentiment that it was inherently biased in having been written by a committee that was composed only of MS "insiders," that is, members of the MS research elite who were unlikely to be critical of a society in whose decisions they were deeply involved and that also supported their own research. 1998 Review of the MS Society of Great Britain and Northern Ireland The 1998 review identified results from the British MS Society's funding of research in the previous decade, as an accounting of how effectively it had used its resources during that period and, also, as a basis for considering future strategies to support research.2 The three primary recommendations on research funding were that (1)
From page 24...
... Private health organizations such as the MS Society, private firms, and the federal government each occupy different niches both in the scientific research community and for health care consumers or caregivers. Identifying how these different organizations can use their resources most productively toward "ending the devastating effects" of MSis important for everyone concerned.
From page 25...
... . Different ways of knowing MS were also represented on the committee: those of someone living with MS, clinicians who treat MS patients, and scientists at the cutting edge of research, ranging from the study of fundamental brain mechanisms to clinical trials of treatments for neurological disease.
From page 26...
... Among the important audiences for this report are the architects and developers of multiple sclerosis research programs. The report covers a broad spectrum of MS research, ranging from strategies to develop treatments that impede the disease process, to treatments for specific symptoms, to research aimed at promoting successful adaptations to the illness including optimizing the abilities of people with MS to function in their daily lives.
From page 27...
... Chapter 6 also looks forward, in this case reviewing critical issues and research for developing specific therapeutic strategies, with an emphasis on disease-modifying therapies. This chapter includes a discussion of challenges inherent in designing appropriate clinical trials in MS research.


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