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What affects your MS? Responses to an anonymous, Internet-based epidemiological survey

Canberra Hospital, Canberra, ACT 2606 Australia, rex.simmons{at}act.gov.au

Anne-Louise Ponsonby

National Centre for Epidemiology and Public Health, Australian National University, Canberra ACT 0200, Australia

Ingrid AF van der Mei

Menzies Centre for Population Health Research, University of Tasmania, Hobart, TAS 7001, Australia

Peter Sheridan

Multiple Sclerosis Australia and Multiple Sclerosis International Federation, 702/135 Macquarie Street, Sydney NSW 2000, Australia

Evolving information techno logy has raised the possibility of new methods of data collection in multiple sclerosis (MS) research. A n anonymous, self-report, Internet-based survey was developed, which asked people with MS their opinion on how various extrinsic factors affected their condition. From September 2001 to July 2002, a total of 2529 people completed the questionnaire. The demographic and clinical profiles of the anonymous respondents indicated that most were likely to have MS. C ommon factors reported as beneficial were cannabis, cold baths, meditation and dietar y factors. C ommon adverse factors reported were high stress, exposure to high temperatures and viral infections. There was an increasing report of high temperatures as being adverse with increasing respondent age (test for trend, P B-0.001). The adverse report of high temperatures correlated significantly with the report of strong sunlight apparently making MS worse (r =0.35, P B-0.0001). In A ustralia, high temperatur es were more likely to be reported as adverse in warmer, lower latitude regions. The association between strong sunlight as adverse and age or region did not persist after adjustment for high temperatures. Thus, this apparent adverse factor appeared to relate to solar heat, not solar light. People with MS may risk vitamin D deficiency because of sun avoidance due to heat-related fatigue or intolerance. This is of clinical significance not only for bone health but because vitamin D may have beneficial immunomodulatory properties. The present study provides new information from people with MS on factors that may influence symptoms or clinical course. This information will now be used in the design of formal epidemiological cohort studies.

Key Words: epidemiology • Internet survey • multiple sclerosis • self-report

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