Background: Due to the chronic and incurable nature of the autoimmune disease multiple sclerosis (MS), some people with MS will seek out alternative therapeutic approaches. Helminth immunotherapy, the deliberate inoculation with helminthic parasites as an intervention to prevent, delay, or minimize progression of autoimmune disorders, is one such approach gaining traction in academic research and with the public. Herein, we explored the perspectives of people with MS regarding helminth immunotherapy and its use in disease management.
Methods: Interpretive description, a qualitative research approach, was applied to data extracted from online forums. Multiple investigators independently identified, extracted, and analyzed data to develop preliminary codes. Inductive thematic analysis and triangulation were then used to collaboratively establish themes.
Results: Four main themes were generated: experience of living with MS, influential factors in contemplating helminth immunotherapy, logistics of helminth immunotherapy, and concerns about helminth immunotherapy.
Conclusions: There was a general consensus in publicly available online forums that conventional therapies do not provide meaningful improvement for some people with MS. These people may seek alternative therapies such as helminth immunotherapy. Information on helminth immunotherapy from internet resources (eg, blogs and social media forums) can contain biased and scientifically unsupported opinions. Messages of efficacy and improved quality of life are readily available and may influence people with MS considering helminth immunotherapy as an alternative therapy. Although some people with MS are seeking helminth immunotherapy, clinical trial data do not currently support its use for people with MS.
Keywords: Alternative treatment; Helminth immunotherapy; Multiple sclerosis (MS); Online research.
© 2020 Consortium of Multiple Sclerosis Centers.