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?

Abstract

Background: Antidepressant withdrawal is experienced by about half of people who try to reduce or come off their medication. It can be a debilitating, long lasting process. Many clinicians misdiagnose or minimise symptoms, inadvertently prolonging suffering. Most are unable to help patients safely taper off. There has been little research into the peer support communities that are playing an increasingly important role in helping people withdraw from psychiatric medications. Methods: To illustrate the growth and activities of Facebook withdrawal groups, we examined 13 such groups. All were raising awareness of, and supporting individuals tapering off, antidepressants and were followed for 13 months. A further three groups were added for the last 5 months of the study. Results: In June 2020, the groups had a total membership of 67,125, of which, 60,261 were in private groups. The increase in membership for the 13 groups over the study period was 28.4%. One group was examined in greater detail. Group membership was 82.5% female, as were 80% of the Administrators and Moderators, all of whom are lay volunteers. Membership was international but dominated (51.2%) by the United States (US). The most common reason for seeking out this group was failed clinician-led tapers. Discussion: The results are discussed in the context of research on the prevalence, duration and severity of antidepressant withdrawal. We question why so many patients seek help in peer-led Facebook groups, rather than relying on the clinicians that prescribed the medications. The withdrawal experiences of tens of thousands of people remain hidden in these groups where they receive support to taper when healthcare services should be responsible. Further research should focus on the methods of support and tapering protocols used in these groups to enable improved, more informed support by clinicians. Support from Governments and healthcare agencies is also needed, internationally, to address this issue.

Tapering antidepressants: why do tens of thousands turn to Facebook groups for support?

“…Most commonly this support is provided by online withdrawal support communities on dedicated websites 4 and, now increasingly commonly, in private Facebook groups. 6 My recent publication '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?' 6 describes the composition and growth of Facebook withdrawal support groups.…”

“…6 My recent publication '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?' 6 describes the composition and growth of Facebook withdrawal support groups. It also discusses the need for these groups in the context of the frequency and prevalence of AD withdrawal.…”

Four research papers I wish my GP had read before prescribing antidepressants

“…A key reason why patients turn to others with lived experience online is because there are no support services within the NHS, with the exception of a small Prescribed Medication Support Service in North Wales. 2 A recent paper by White et al, The role of Facebook groups in the management and raising of awareness of antidepressant withdrawal, 8 looked into the experiences of 67 125 people on Facebook withdrawal sites, and questioned why social media seems to be filling a void left by health services.…”

Successful use of tapering strips for hyperbolic reduction of antidepressant dose: a cohort study

“… 1 , 2 Post-acute withdrawal or protracted withdrawal syndromes from antidepressants can be severe and long-lasting, and its manifestations clinically heterogeneous. 3 Given high rates of long-term prescribing, particularly in deprived areas, 4 withdrawal and inability to discontinue antidepressant medication represent a significant public health problem, 5 particularly given persisting doubts about real-world effectiveness 6 and indications that continued drug treatment with antidepressant medications may stimulate processes that run counter to the initial acute withdrawal effects of a drug (the oppositional model of tolerance). 7 Patient surveys suggest current inadequacy of healthcare systems to recognise and manage prescribed drug withdrawal with tapering medication, and patient feedback, 5 , 8 , 9 which is matched by research showing that only a small minority of general practitioners feel sufficiently knowledgeable about withdrawal.…”

“… 10 As a result, tens of thousands of patients resort to social media groups that are filling the void left by health services. 5 …”