Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

Food and health

Dietary responses to a multiple sclerosis diagnosis: a qualitative study

Abstract

Background/objectives

Multiple sclerosis (MS) is an immune-mediated disease with no known cure and insufficient evidence to support a special therapeutic diet to alter symptom management or disease progression. Several studies have reported dietary changes made by people with MS, but there has been limited investigation into experiences surrounding diet in those recently diagnosed. This study explored responses to diet after a recent diagnosis of MS in people living in Western Australia.

Subjects/methods

Eleven adults with MS (mean time since diagnosis 8 months) participated in semi-structured interviews focusing on responses to diet since MS diagnosis. Interviews were transcribed, coded and analysed using grounded theory principles.

Results

Three theme responses emerged; (1) the perceived incompatibility of lack of/or generalised dietary advice with disease seriousness at the time of diagnosis; (2) extensive personal research and information seeking with difficulty judging credibility, and (3) self-experimentation with diet to either control MS symptoms or to cure MS.

Conclusions

Given the seriousness of the disease, there is a perceived gap in dietary information provided at the time of diagnosis. Healthcare professionals should address concerns with alternative therapeutic diets advertised to treat or cure MS, and clearly convey the reasoning for the general healthy dietary recommendations. This would better align advice with the perceptions about the role of diet in MS, assist people with MS in need of information and minimise dietary self-experimentation. Future research should explore the importance of diet for those who have had MS for a longer period of time.

This is a preview of subscription content

Access options

Buy article

Get time limited or full article access on ReadCube.

$32.00

All prices are NET prices.

References

  1. Amato MP, Derfuss T, Hemmer B, Liblau R, Montalban X, Soelberg Sorensen P et al. Environmental modifiable risk factors for multiple sclerosis: Report from the 2016 ECTRIMS focused workshop. Multiple Sclerosis. 2017; https://doi.org/10.1177/1352458516686847

    Article  Google Scholar 

  2. Mandia D, Ferraro OE, Nosari G, Montomoli C, Zardini E, Bergamaschi R. Environmental factors and multiple sclerosis severity: a descriptive study. Int J Environ Res Public Health. 2014;11:6417–32. https://doi.org/10.3390/ijerph110606417.

    Article  PubMed  PubMed Central  Google Scholar 

  3. Reich DS, Lucchinetti CF, Calabresi PA. Multiple sclerosis. N Engl J Med. 2018;378:169–80. https://doi.org/10.1056/NEJMra1401483.

    CAS  Article  PubMed  Google Scholar 

  4. Browne P, Chandraratna D, Angood C, Tremlett H, Baker C, Taylor BV, et al. Atlas of multiple sclerosis 2013: A growing global problem with widespread inequity. Neurology. 2014;83:1022–4. https://doi.org/10.1212/WNL.0000000000000768.

    Article  PubMed  PubMed Central  Google Scholar 

  5. Palmer AJ, Colman S, O’Leary B, Taylor BV, Simmons RD. The economic impact of multiple sclerosis in Australia in 2010. Mult Scler. 2013;19:1640–6. https://doi.org/10.1177/1352458513488230.

    Article  PubMed  Google Scholar 

  6. Farinotti M, Vacchi L, Simi S, Di Pietrantonj C, Brait L, Filippini G. Dietary interventions for multiple sclerosis. Cochrane Database Syst Rev. 2012;12:CD004192 https://doi.org/10.1002/14651858.CD004192.pub3.

    Article  PubMed  Google Scholar 

  7. Bagur MJ, Murcia MA, Jimenez-Monreal AM, Tur JA, Bibiloni MM, Alonso GL, et al. Influence of diet in multiple sclerosis: a systematic review. Adv Nutr. 2017;8:463–72. https://doi.org/10.3945/an.116.014191

    Article  PubMed  PubMed Central  Google Scholar 

  8. Cunningham E. Are there evidence-based dietary interventions for multiple sclerosis? J Acad Nutr Diet. 2013;113:1004 https://doi.org/10.1016/j.jand.2013.05.010.

    Article  PubMed  Google Scholar 

  9. Jelinek GA, Hassed CS. Managing multiple sclerosis in primary care: are we forgetting something? Qual Prim Care. 2009;17:55–61.

    PubMed  Google Scholar 

  10. von Geldern G, Mowry EM. The influence of nutritional factors on the prognosis of multiple sclerosis. Nat Rev Neurol. 2012;8:678–89. https://doi.org/10.1038/nrneurol.2012.194.

    CAS  Article  Google Scholar 

  11. Maker-Clark G, Patel S. Integrative therapies for multiple sclerosis. Dis-a-Mon. 2013;59:290–301. https://doi.org/10.1016/j.disamonth.2013.03.017.

    Article  Google Scholar 

  12. Riccio P, Rossano R. Nutrition facts in multiple sclerosis. ASN Neuro 2015; 7; https://doi.org/10.1177/1759091414568185

    Article  Google Scholar 

  13. Altowaijri G, Fryman A, Yadav V. Dietary interventions and multiple sclerosis. Curr Neurol Neurosci Rep. 2017;17:28 https://doi.org/10.1007/s11910-017-0732-3.

    CAS  Article  PubMed  Google Scholar 

  14. Motl RW, Mowry EM, Ehde DM, LaRocca NG, Smith KE, Costello K, et al. Wellness and multiple sclerosis: The National MS Society establishes a Wellness Research Working Group and research priorities. Mult Scler. 2018;24:262–7. https://doi.org/10.1177/1352458516687404.

    Article  PubMed  Google Scholar 

  15. Brenton JN, Goldman MD. A study of dietary modification: perceptions and attitudes of patients with multiple sclerosis. Mult Scler Relat Disord. 2016;8:54–57. https://doi.org/10.1016/j.msard.2016.04.009.

    Article  PubMed  Google Scholar 

  16. Sui Z, Wong WK, Louie JC, Rangan A. Discretionary food and beverage consumption and its association with demographic characteristics, weight status, and fruit and vegetable intakes in Australian adults. Public Health Nutr. 2017;20:274–81. https://doi.org/10.1017/S1368980016002305.

    Article  PubMed  Google Scholar 

  17. Grech A, Sui Z, Siu HY, Zheng M, Allman-Farinelli M, Rangan A. Socio-demographic determinants of diet quality in Australian Adults using the validated Healthy Eating Index for Australian Adults (HEIFA-2013). Healthcare. 2017;5:7 https://doi.org/10.3390/healthcare5010007.

    Article  PubMed Central  Google Scholar 

  18. Fitzgerald KC, Tyry T, Salter A, Cofield SS, Cutter G, Fox RJ, et al. A survey of dietary characteristics in a large population of people with multiple sclerosis. Mult Scler Relat Disord. . 2018;22:12–18https://doi.org/10.1016/j.msard.2018.02.019.

    Article  PubMed  Google Scholar 

  19. Riemann-Lorenz K, Eilers M, von Geldern G, Schulz KH, Kopke S, Heesen C. Dietary interventions in multiple sclerosis: development and pilot-testing of an Evidence Based Patient Education Program. PLoS One. 2016;11:e0165246 https://doi.org/10.1371/journal.pone.0165246.

    CAS  Article  PubMed  PubMed Central  Google Scholar 

  20. Schwarz S, Knorr C, Geiger H, Flachenecker P. Complementary and alternative medicine for multiple sclerosis. Mult Scler. 2008;14:1113–9. https://doi.org/10.1177/1352458508092808.

    CAS  Article  PubMed  Google Scholar 

  21. Leong EM, Semple SJ, Angley M, Siebert W, Petkov J, McKinnon RA. Complementary and alternative medicines and dietary interventions in multiple sclerosis: what is being used in South Australia and why? Complement Ther Med. 2009;17:216–23. https://doi.org/10.1016/j.ctim.2009.03.001.

    CAS  Article  PubMed  Google Scholar 

  22. Russell RD, Lucas RM, Brennan V, Sherriff JL, Begley A, Ausimmune Investigator Group, et al. Reported changes in dietary behavior following a first clinical diagnosis of central nervous system demyelination. Front Neurol. 2018;9:161 https://doi.org/10.3389/fneur.2018.00161

  23. Riccio P, Rossano R, Liuzzi GM. May diet and dietary supplements improve the wellness of multiple sclerosis patients? A molecular approach. Autoimmune Dis. 2011;2010:249842 https://doi.org/10.4061/2010/249842.

    CAS  Article  PubMed  PubMed Central  Google Scholar 

  24. Claflin SB, van der Mei IAF, Taylor BV. Complementary and alternative treatments of multiple sclerosis: a review of the evidence from 2001 to 2016. J Neurol Neurosurg Psychiatry. 2018;89:34–41. https://doi.org/10.1136/jnnp-2016-314490.

    Article  PubMed  Google Scholar 

  25. Jelinek G. Overcoming multiple sclerosis. An evidence-based guide to recovery. Crows Nest, NSW: Allen & Unwin; 2010.

    Google Scholar 

  26. Wahls T, Adamson T. The Wahls protocol: a radical new way to treat all chronic autoimmune conditions using Paleo principles. New York: Penguin Group; 2014.

    Google Scholar 

  27. Liamputtong P. Qualitative research methods. 4th edn. South Melbourne: Oxford University Press; 2013.

    Google Scholar 

  28. Plow M, Finlayson M. A qualitative study of nutritional behaviors in adults with multiple sclerosis. J Neurosci Nurs. 2012;44:337–50. https://doi.org/10.1097/JNN.0b013e3182682f9b.

    Article  PubMed  Google Scholar 

  29. Kilborn SJ. Dietary assessment and self-perceived impact of food in persons with multiple sclerosis. (Master’s thesis) Master’s thesis. Montreal: McGill University; 2008.

    Google Scholar 

  30. Wu YP, Yi J, McClellan J, Kim J, Tian T, Grahmann B, et al. Barriers and facilitators of healthy diet and exercise among adolescent and young adult cancer survivors: implications for behavioral interventions. J Adolesc Young- Adult Oncol. 2015;4:184–91. https://doi.org/10.1089/jayao.2015.0028

    Article  PubMed  PubMed Central  Google Scholar 

  31. Brownie S, Coutts R. Older Australians’ perceptions and practices in relation to a healthy diet for old age: a qualitative study. J Nutr Health Aging. 2013;17:125–9. https://doi.org/10.1007/s12603-012-0371-y.

    CAS  Article  PubMed  Google Scholar 

  32. Lucan SC, Barg FK, Karasz A, Palmer CS, Long JA. Concepts of healthy diet among urban, low-income, African Americans. J Community Health. 2012;37:754–62. https://doi.org/10.1007/s10900-011-9508-x.

    Article  PubMed  Google Scholar 

  33. Corbin J, Strauss A. Basics of qualitative research: techniques and procedures for developing grounded theory. 3rd edn. California: Sage Publications; 2008.

    Book  Google Scholar 

  34. Charmaz K. Constructing grounded theory: a practical guide through qualitative analysis. London: SAGE Publications; 2006.

    Google Scholar 

  35. Conrad P, Barker KK. The social construction of illness: key insights and policy implications. J Health Soc Behav. 2010;51:S67–79. https://doi.org/10.1177/0022146510383495.

    Article  PubMed  Google Scholar 

  36. Kerr A, Ross E, Jacques G, Cunningham-Burley S. The sociology of cancer: a decade of research. Sociol Health Illn. 2018;40:552–76. https://doi.org/10.1111/1467-9566.12662.

    Article  PubMed  PubMed Central  Google Scholar 

  37. Denzin NK, Lincoln YS. The sage handbook of qualitative research. Thousand Oaks, CA: Sage; 2011.

    Google Scholar 

  38. James‐Martin G, Koczwara B, Smith EL, Miller MD. Information needs of cancer patients and survivors regarding diet, exercise and weight management: a qualitative study. Eur J Cancer Care. 2014;23:340–8. https://doi.org/10.1111/ecc.12159

    Article  Google Scholar 

  39. Ghafari S, Fallahi-Khoshknab M, Nourozi K, Mohammadi E. Patients’ experiences of adapting to multiple sclerosis: a qualitative study. Contemp Nurse. 2015;50:36–49. https://doi.org/10.1080/10376178.2015.1010252.

    Article  PubMed  Google Scholar 

  40. Methley AM, Chew-Graham CA, Cheraghi-Sohi S, Campbell SM. A qualitative study of patient and professional perspectives of healthcare services for multiple sclerosis: implications for service development and policy. Health Soc Care Community. 2017;25:848–57. https://doi.org/10.1111/hsc.12369.

    Article  PubMed  Google Scholar 

  41. Ceuninck van Capelle A, Meide HV, Vosman FJH, Visser LH. A qualitative study assessing patient perspectives in the process of decision-making on disease modifying therapies (DMT’s) in multiple sclerosis (MS). PLoS One. 2017;12:e0182806 https://doi.org/10.1371/journal.pone.0182806.

    CAS  Article  PubMed  PubMed Central  Google Scholar 

  42. Masullo L, Papas MA, Cotugna N, Baker S, Mahoney L, Trabulsi J. Complementary and alternative medicine use and nutrient intake among individuals with multiple sclerosis in the United States. J Community Health. 2015;40:153–60. https://doi.org/10.1007/s10900-014-9913-z.

    Article  PubMed  Google Scholar 

  43. Beckett JM, Bird ML, Pittaway J, Ahuja KD. Online dietary advice for the symptomatic management of multiple sclerosis: a scoping review protocol. JBI Database Syst Rev Implement Rep. 2017;15:230–5. https://doi.org/10.11124/jbisrir-2016-002937.

    Article  Google Scholar 

  44. Moccia M, Carotenuto A, Massarelli M, Lanzillo R, Brescia Morra V. Can people with multiple sclerosis actually understand what they read in the Internet age? J Clin Neurosci. 2016;25:167–8. https://doi.org/10.1016/j.jocn.2015.10.003.

    Article  PubMed  Google Scholar 

  45. Plow MA, Golding M. A qualitative study of multiple health behaviors in adults with multiple sclerosis. Int J MS Care. 2016;18:248–56. https://doi.org/10.7224/1537-2073.2015-065.

    Article  PubMed  PubMed Central  Google Scholar 

  46. Maley M, Warren BS, Devine CM. A second chance: meanings of body weight, diet, and physical activity to women who have experienced cancer. J Nutr Educ Behav. 2013;45:232–9. https://doi.org/10.1016/j.jneb.2012.10.009.

    Article  PubMed  Google Scholar 

  47. Members of the MSitsCSG, Rieckmann P, Centonze D, Elovaara I, Giovannoni G, Havrdova E, et al. Unmet needs, burden of treatment, and patient engagement in multiple sclerosis: a combined perspective from the MS in the 21st Century Steering Group. Mult Scler Relat Disord. 2018;19:153–60. https://doi.org/10.1016/j.msard.2017.11.013

    Article  Google Scholar 

Download references

Acknowledgements

We would like to thank the members of MSWA for their participation, and the General Manager of Member Services, Sue Shapland, for her input in developing the interview guide.

Funding

LJB is funded by a MSWA Postdoctoral Research Fellowship. The School of Public Health Curtin University provided funding for this study.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Andrea Begley.

Ethics declarations

Conflict of interest

The authors declare that they have no conflict of interest.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Russell, R.D., Black, L.J., Sherriff, J.L. et al. Dietary responses to a multiple sclerosis diagnosis: a qualitative study. Eur J Clin Nutr 73, 601–608 (2019). https://doi.org/10.1038/s41430-018-0252-5

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/s41430-018-0252-5

Search

Quick links