Noah Macca scraped online posts from Reddit and Twitter to extract patient-reported experiences regarding treatment.
- r/VaccineLongHaulers: Reddit - Dive into anything
- r/LongCOVID: Reddit - Dive into anything
- r/Lyme: Reddit - Dive into anything
- r/MCAS: Reddit - Dive into anything
- r/CFS: Reddit - Dive into anything
- r/Dysautonomia: Reddit - Dive into anything
While the data is very interesting, it does suggest that there is a strong bias towards ‘everything works’. When I surveyed vax injured patients (with some LC and ME/CFS) about what works, response rates are much lower than what’s reported on Reddit.
Survey data for magnesium shows that the response rate is well below 86%:
An important takeaway is that we may want to take Reddit (and other social media) with a grain of salt. A lot of people don’t bother posting about their experience when a treatment does nothing or goes poorly. We also see that trendy treatments like anticoag (e.g. nattokinase) get talked about more than extremely popular supplements like vitamin C, magnesium, etc.
Vax injury surveys can be found here: V🥕ccn injury research surveys (completed) - Long Haul Wiki