Thank you for doing this.

There are also lengthy discussion threads on the Schizophrenia.com forum, one of which spans 2014-2018 and is titled “Has anyone came off of invega sustenna?”: https://forum.schizophrenia.com/t/has-anyone-came-off-of-invega-sustenna/16415

At the very least, this material should be the subject of research papers. “Quite a few researchers have used data from internet forums to investigate psychiatric drug harm. This is an FDA-recognized method called ‘social media listening‘ (SML) or netnography, used to capture real-world patient experiences that often go unreported in clinical settings.” A few examples:

• Adele Framer, founder of the peer-support forum SurvivingAntidepressants.org (where she posted under the username “Altostrata”), in 2020 co-authored (with Michael P. Hengartner, Lukas Schulthess and Anders Sorensen) a research study published in the journal Therapeutic Advances in Psychopharmacology titled “Protracted withdrawal syndrome after stopping antidepressants: a descriptive quantitative analysis of consumer narratives from a large internet forum,” which analyzed 69 individual reports of protracted withdrawal (also called prolonged antidepressant withdrawal or PAWS) sourced from patient narratives posted on her forum: https://doi.org/10.1177/2045125320980573
• Mad in America reported on a 2021 study titled “Patient perspective of tardive dyskinesia: results from a social media listening study,” published in the journal BMC Psychiatry, that explored the emotional and social impact of Tardive Dyskinesia (TD), which its core finding being that TD is “emotionally devastating”: https://www.madinamerica.com/2021/10/manufacturer-tardive-dyskinesia-td-drugs-finds-td-emotionally-devastating/ “The FDA-recognized method of SML was used to analyze freely available online content to understand patient experiences. A search (using artificial intelligence or AI) was performed for English-language posts on social media platforms, blogs, and forums from March 2017 to November 2019. A commercial analytics platform (NetBase™) was used to identify relevant posts. This yielded 261 potential posts, of which 107 were manually curated for final analysis. The 107 posts (primarily from forums (47%) and Twitter (33%)) were analyzed to determine sentiment (positive, negative, neutral) and key themes using a thematic analysis approach. […] However, the study’s value is heavily tempered by the significant conflict of interest (COI), as all authors were employees of a company that profits from treating TD. Their direct involvement in study design and data analysis introduces a potential risk of bias, a fact that the MIA article strongly emphasizes.” (All four authors—Mallory Farrar, Leslie Lundt, Ericha Franey, Chuck Yonan—were employees of Neurocrine Biosciences, Inc., a company that makes the drug Ingrezza (valbenazine) for treating TD, at the time of publication.) Nevertheless, this study is the first to apply SML to understand TD, “successfully capturing real-world, unsolicited patient experiences that can be missed in structured clinical settings.”
• One of the earliest studies to systematically analyze online reports of persistent withdrawal symptoms and psychopathology (i.e. publicly available patient anecdotes from websites), was “Patient Online Report of Selective Serotonin Reuptake Inhibitor-Induced Persistent Postwithdrawal Anxiety and Mood Disorders” (2012) by Carlotta Belaise, Alessia Gatti, Virginie-Anne Chouinard, and Guy Chouinard: https://karger.com/pps/article/81/6/386/282690 ; symptoms were reported to last for a median of 2.1 years