SR - MS Flashcards
Murray, Multiple Sclerosis: The History of a Disease (2005)
505) Important impetus for change and encouragement of research in MS in the last 50 yrs has been the formation of the MS societies in several countries
506) Sylvia Lawry, brother has MS. Brought together 20 leaders in neurology March 11 1946 to set up organization
She looked at the med lit to see who was most prominent and wld give the organization a high profile in the med community as well as provide the society w advice.
Lawry selected Putnam as the first med director.
507) Lawry = tireless in capturing the interest of well-connected politicians, publishers, and corporate leaders to assist in the effort. Senator John F Kennedy involved.
Clearly the organizational skills and single-minded drive of Sylvia Lawry resulted in the rapid emergence of the National MS Soc.
Early strategy for research support = encourage public to donate, w additional benefit of raising awareness, and encourage govt to increase support for MS research
508) Mutually beneficial relationship: Lawry needed the expertise and the acceptance of the profession, and they needed Society support for their research and their young faculty
511) Lord Howard of Glossop, whose wife had MS, extended an invitation to Lawry to visit London and meet with Richard Cave, mem of the legal staff of the House of Lords, whose wife also suffered w MS.
MS Society of Great Britain and Northern Ireland was formed.
Described itself in first annual report as ‘foster child’ of the American group
512) Promoted and funded research, as well as providing services to patients and families
513) Dr John Walford joined British Soc’s administration and by the time he retired in 1994, the Soc had committed £85 mil to research and services
following feeling that MS Soc was too conservative and slow in funding research into projects e.g. LeGac therapy, Multiple Sclerosis Action Group, later called Action for Research into MS, formed as breakaway group.
It repd patients and fams impatient w the pace of med research. Group ultimately failed
Lawry develd international organization to coord activities of various national organizations.
514) Increasing attention toward MS by stressing how common it was
515) 1950s, NMSS developed concept that the disease was more common than polio - a disease all Americans feared.
It also develd a military metaphor for the battle against the disease, suggesting it needed to be fought by the individual and the collective. Also fostered idea of individual struggle and achievement: the patient overcoming the disease by personal will power and determination
517) V negative view of MS begin of 20th C.
View that patient shld be kept in dark
519) Beginning in the 1950s, increasing num of illness narratives by those who suffer from MS
520) Dr Forsythe wrote the story of her struggle w MS in the Observer in London
Media began to cover struggles of individuals with MS, and in the med lit The Lancet led the way by publishing the personal story of Janette Gould’s long adaptation to her disabilities.
Now, when patients and their families look for more info on MS, they can get excellent literature from the MS Soc in their area, or just as likely from the neighbourhood bookstore
522-3) Famous figures w MS, e.g. cellist Jacqueline du Pré
524) Autobiographies and media attention about sufferers w MS have helped bring this disease, and the ability to cope w it, to greater public attention.
Dramatic change in attitudes on public and patient education about MS.
Early in the century, a paternalistic approach regarded med information as the purview of the physician. This even applied to the patient, and as we have seen, physicians felt it was appropriate to keep knowledge of the disease to themselves and not disclose it to the patient, although they might to family.
Tracy Putnam led the effort to have more public education about the disease in the 1950s, and this was carried forward effectively by the MS societies.
Patient narratives of the struggle with the disease have become common, as have media stories of celebrities with the disease.
Perhaps greatest impact in recent yrs - public attention to research discoveries about MS, which dominate neurological journals and have easily been adapted for media attention.
So much public attention that almost everyone knows someone who has been touched by the disease.
Goal of achieving wide public attention to the disease seems to have succeeded
Talley, The Treatment of Multiple Sclerosis in Los Angeles and the
United States, 1947-1960
https://muse.jhu.edu/article/49455/pdf
MS patients placing pressure on doctors for action - this affecting treatment
