Group membership was 82.5% female, as were 80% of the Administrators and Moderators, all of whom are lay volunteers.
The role of Facebook groups in the management and raising of awareness of antidepressant withdrawal: is social media filling the void left by health services? – Edward White, John Read, Sherry Julo, 2021 (sagepub.com)
By far the most common reason for people seeking out and joining these groups is following failed doctor- or psychiatrist-led tapers. Most clinicians use the standard doses of the medications to taper patients over short periods of, at most, months but often weeks or days. Hence, they seek support via these groups, where they find an array of support options, and as demonstrated by this study, often focusing on the drug they are trying to taper off. Here they can ask questions and find answers to questions directly relating to other people’s experiences and knowledge of the symptoms, and of a safe tapering process.37,38
https://doi.org/10.1177%2F2045125320981174
In most groups, members are guided through a carefully managed tapering process usually starting at 10% of the previous dose per month and as directed by the group rules, advice and Admin and Mod input. These protocols are well established and documented,39–41 with extensive documentation on open forums such as https://survivingantidepressants.org and https://withdrawal.theinnercompass.org. However, despite being publicly available, they are rarely administered by clinicians, who tend to be bound by governmental and healthcare agency guidelines.
What is clear is that these groups play a significant role in supporting those who have been failed by the medical and psychiatric approaches used to taper patients off these medications. Both the overall growth of the studied groups and the apparent ability of the well-established, larger groups to attract considerable numbers of new members is remarkable and should be very worrying from a care delivery perspective. Indeed, the overall ethos and attitude of these groups towards the established medical and psychiatric approaches to supporting patients withdrawing, can be described as at best unsympathetic and at worst dismissive.