Did My Doctor Make Me Alcoholic or Substance Abusing

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1. susanne says

   February 12, 2023 at 7:06 pm

   SpringerLink It’s impossible to include the whole publication or decide what to leave out due to space but the complete publication with refs is Open Access

   Published: 22 December 2022
   Epistemology of the side effect: anecdote and evidence in the digital age
   Antoine Lentacker

   Abstract
   Through the history of rxisk.org, this article explores some of the Web’s effects on the production and circulation of pharmaceutical knowledge. RxISK is an independent website that solicits reports from patients in order to uncover drug-induced harms which clinical trials and national pharmacovigilance schemes fail to identify. The first part of the article locates the origins of the project in the nearly 15-year struggle to obtain recognition and redress for one particular side effect of selective serotonin reuptake inhibitor (SSRI) antidepressants—their ability to trigger violent or suicidal behavior. That struggle, I show, brought to light the ways in which modern evidence-making practices obscure the harms of pharmacological treatment. The second part, based on interviews with the site’s creators, examines how RxISK’s data collection practices seek to convert the Web from a site for the circulation of misinformation into a usable source of new knowledge about drugs. The project’s originality, I argue, lies in its effort to reframe the relation between anecdote and evidence so as to liberate the patient’s voice from the burden of representativeness. Within this reframed epistemology, the project is also freed from the imperative of large-scale data extraction that increasingly dominates the economy of digital health.

   (2 examples of ‘stories’ plse read article as trying to save space here)
   What do stories of this kind tell us about the drugs and disorders they involve? All follow the familiar script of the side-effect story in which ‘adverse events’ occur after the taking of a drug and are presumed to be related to it. But are they? Often illness or injury merely follows the taking of a drug; only in some cases do they follow from it, with no easy way of telling which. What we call evidence-based medicine finds certainties only in large numbers, those of vast controlled trials or (merely a second best) of even vaster observational studies, not in individual cases. In other words, the trials and studies of clinical epidemiology only ever measure a risk. They establish how likely it is that a particular outcome resulted from exposure to a substance; never do they confirm that it actually has in any particular case. As the skills of the statistician replace those of the clinician, the knowledge of the individual gained through the eye and the touch, and through narrative and judgment, yields to the statistically significant findings of controlled studies. When there is truth only in structured aggregates, single clinical cases in which a rare and unexpected effect may come to light are downgraded to the status of anecdotes—of ‘mere stories,’ often tragic but always stripped of any general truth value. In this way the epistemology of modern medical science has had far-reaching implications for the recognition of so-called ‘adverse drug events,’ the injuries modern medicine routinely inflicts on those in its care.

   This essay is about the fate of side-effect stories after they are dismissed as anecdotes, when they are heard but not listened to, accepted as real but deemed insignificant. Etymologically, ‘anecdotal’ means ‘unpublished.’ Nowadays, though, there is a place for stories that fail to appear in authorized publications. Since its beginnings three decades ago, the World Wide Web has provided a kind of universal repository, an expansive, unstructured, but searchable database within which stories stripped of official imprimatur may find a second life. In consequence the Web has grown over time into something like a medical Library of Babel, a beguiling but treacherous trove of information which, like the fictive library in Jorge Luis Borges’s famous tale, contains answers to all our questions, but hidden away in stacks upon stacks of misguided, misleading, or merely senseless content (Fig. 1). To reflect on the conditions under which the Web might be converted from a space for the proliferation of misinformation, of dubious stories and unverifiable accounts, into a medium for the production of new knowledge about drugs, I explore the history of a website called rxisk.org. Founded in 2012 by clinicians David Healy and Dee Mangin and medical anthropologist Kalman Applbaum to solicit side-effect reports from those who take (rather than those who prescribe) drugs, RxISK has fashioned itself explicitly as an outlet for stories not heard or accepted elsewhere, while also having to craft its own brand of expertise and devise its own methods to salvage those stories from the epistemic limbo of the Web.
   Fig. 1 (read article)
   Side-effect stories on the Web: type the name of a medicine and a side effect you worry about in a search engine, and you are certain to find a confirmation of your worst fears as well as the reassurance you were looking for
   As scholars, we are still working out methods to turn websites into objects of rigorous study. This paper combines two approaches. A first historical part traces the origins of RxISK back to the early 1990s, the same few years that saw the creation of the Web, the advent of the discourse of ‘evidence-based medicine,’ and also the introduction of a new generation of antidepressants—drugs like Prozac, Zoloft, or Paxil, known collectively as SSRIs (selective serotonin reuptake inhibitors). SSRIs were exemplary of a new kind of ‘blockbuster’ drugs that were extensively marketed, prescribed to millions of patients for months or years on end, and eventually discovered to cause unsuspected and in some cases lethal harms. As I will show, the nearly 15-year struggle to obtain recognition and redress for one specific side effect of SSRIs—their ability to trigger suicidal or violent behavior—played a key role in crystallizing the rationale for the RxISK project. Much of that struggle played out in the legal arena, and it is an argument of this paper that the forensic origins of RxISK shaped its implicit epistemology in decisive ways.

   The latter half of the paper, then, draws on interviews with RxISK’s creators and on an analysis of the site’s data curation practices to foreground its distinctive place in the landscape of ‘eHealth.’ RxISK’s model is not quite that of the peer-to-peer platform dedicated to the airing and sharing of patient voices. Nor does it rely on the algorithmic mining of large volumes of electronic health data collected from patients, with or without their consent. As recent work at the intersection of science and media studies made clear, these two seemingly opposite regimes of networked knowledge production are by no means exclusive. The affective economy of airing and sharing increasingly converges with an extractive economy of data collection and commodification, as data brokers exploit the rhetoric of openness, participation, and empowerment to obtain from users the data they subsequently monetize (Lupton 2014; Ostherr 2018; Ruckenstein and Schüll 2017; Van Dijck and Poell 2016). RxISK’s originality, I argue, is to seek credibility in a reframing of the relation between anecdote and evidence that, under the right conditions, may liberate the patient’s voice from the burden of representativeness. I will describe what RxISK’s co-founders understand these conditions to be and how the site works to create them online.

   But first, a note about vocabulary. The terms of the art are adverse drug event (ADE) or adverse drug reaction (ADR), ……Yet side effect is the better term for my purposes, for the noxious and unintended event, the troublesome perturbation that cannot be predicted and explained away, is not just a pharmacological phenomenon. It is, as Thomas Kuhn theorized in Structure of Scientific Revolutions, an inevitable byproduct of any normalized paradigm of knowledge production (Kuhn 1996, pp. 52–53). As such, I hope that the following can be read in two ways: as an argument about an unresolved issue in modern health care, but also as a meditation on the implications of modern evidence-making instruments and institutions, on the relations between narration and truth, and the consequences of shifting media ecologies on the conditions of self-knowledge and self-experience.

   Blinding the clinician……………..(need to read article)
   In Michel Foucault’s description, the clinic as it emerged around 1800 was not a place, a practice, or a discourse, but a “fundamental experience” (Foucault 1994, p. x) in which space, gaze, and language redeployed their relations in radically new and productive ways. By opening up bodies, literally and figuratively, the clinic of the early nineteenth century linked seeing and knowing in one and the same operation, displacing a “metaphysics of illness” in which bodies were read through texts rather than cut open with the hand and the eye. The clinic, too, understood itself as evidence-based. …………………

   Likewise, at least for the first two thirds of the nineteenth century, the visible effects of drugs provided the measure of their efficacy. Drugs were embraced for their powers to alter the bodily economy in immediately discernable ways. Digitalis strengthened the pulse; opium weakened it and induced somnolence; quinine lowered fever; emetics or purgatives evacuated the digestive tract. Evidently these drugs worked for they affected the body in ways that could be seen or sensed by both physician and patient (Warner 1986). Later in the century the microbiological laboratory broadened the field of what could be visualized, but it did not fundamentally alter an epistemology that linked evidence to visibility. ….
   In 1961, the year he drafted Birth of the Clinic, the effects of thalidomide came to global attention. Thousands of expecting mothers to whom that drug had been sold as a safe alternative to older sleeping aids gave birth to babies with severely atrophied limbs. The effect was unusual, visually striking, and widely covered in the media, making the thalidomide catastrophe arguably the most consequential event in the recent history of how drugs are researched and regulated. In its wake drug agencies across the western world stopped approving new drugs unless their producers were able to show proof of safety and efficacy in controlled clinical trials. The so-called randomized controlled trial (RCT), still a new and rather marginal methodology in the early 1960s, remade within a decade the entire process of pharmaceutical research and development (Carpenter 2010; Hauray and Urfalino 2007).

   The embrace of the RCT in therapeutic research marked a gradual loss of faith in the reliability of clinical judgment, a growing sense that, in clinical matters, self-evidence and self-deception look too much alike. The random assignment of trial participants to a treatment group (where they receive the therapy under investigation) or a control group (where they receive a placebo or comparator drug instead) prevents clinicians’ preconceptions as to who is most likely to benefit from the experimental drug from playing a role in the allocation, ensuring that research subjects do not end up in the treatment arm of a trial because they share hidden characteristics that might bias a comparison with those enrolled in the control arm. Whenever possible, random assignment proceeds under a ‘double blind,’ so that neither the patients-cum-test-subjects nor the clinicians who track their progress throughout the trial know who is treated with the experimental drug and who isn’t. In this way the architecture of the RCT deliberately severs the link between seeing and knowing on which the epistemology of the clinic was founded. In modern clinical trials, clinicians give up their role as subjects of knowledge to become mere links in a vast recording and reporting apparatus. The clinical data they log into patients’ case report forms do not become knowledge until the trial ends, the ‘blind is broken,’ and the outcomes of both treatment and control groups can be compared. This is the preserve of the statistician, who reveals the meaning of the data by computing them and calculating their significance.
   ……………..When computers arrived in workplaces, including sites of care, clinical trials began reshaping the practice of medicine as well as the regulation of drugs. The 1992 paper that brought the term ‘evidence-based medicine’ into circulation just as the Web opened to the public described the transformation in exactly those ways. It opened with the story of an imaginary medical resident who, faced with a difficult case, eschews the guidance of more seasoned clinicians on the ward and instead “proceeds to the library and … conducts a computerized literature search” (Guyatt et al. 1992, p. 2420). Whereas the clinic rested on oral transmission and on the paper chart that documents a single clinical case, the electronic database is the privileged medium of a medical epistemology that locates truth in large data sets. Ease of access to the findings of formal studies (now even the trip to the library can be spared) rendered experience and ‘instinct’ unnecessary and even suspect. Compared with data produced in experimental settings such as RCTs—the new ‘gold standard’ of clinical evidence (Jones and Podolsky 2015; Timmermans and Berg 2003)—single clinical cases dropped to the bottom of ‘evidence hierarchies.’ ‘Anecdotal’ became a way to lump together the textured case history, once the building block of medical knowledge, with other varieties of biased, speculative, second-hand, or otherwise tainted evidence which clinicians were enjoined to disregard (Fig. 2).
   Fig. 2 (see article)

   Thus evidence-as-immediacy, gained through the gaze and the touch, gave way in the new medical epistemology to evidence of a mediated kind, one produced away from the day-to-day clinic and channeled back to clinicians expected to adhere to it in their practice. How or how much the new paradigm transformed practice in real clinical settings is a complex empirical question, which sociologists have attempted to answer by querying physicians or observing them at work. Their investigations have yielded a somewhat ambivalent picture, highlighting the growing place of ‘evidence-based’ clinical guidelines in healthcare governance while also documenting the inertia, skepticism, or resistance of doctors toward developments perceived as undermining their professional autonomy (Dopson et al. 2003; Timmermans and Oh 2010). By considering the implications of EBM through the lens of side effects, I seek to move the analytical focus more fully onto harms suffered by patients. Evidence of such harms is, for reasons outlined in this paper, indirect, elusive, and contested. But its contested nature also makes it valuable in examining the stakes of shifting constructions of the visible and the invisible in medicine.

   This is not a side effect
   The original exponents of evidence-based medicine saw in randomized trials a means to keep drug companies in check….. The vast expansion of the pharmaceutical business in the last three decades, however, suggests a more complex picture. Commissioned and funded by drug manufacturers, RCTs have granted the industry unprecedented influence over the science that is meant to hold it accountable. The trajectory of SSRIs brought this paradox into sharp relief.

   Much like thalidomide, SSRI antidepressants were marketed on the basis of their allegedly favorable side-effect profile. Older antidepressants came with notoriously burdensome side effects, so the motto that the new molecules were no less effective yet better tolerated and safer in overdose than older alternatives struck a chord among physicians in primary care as well as in psychiatry. A vast and previously unsuspected market for milder mood disorders opened up, turning Prozac within a few years of its 1988 launch into psychiatry’s first “blockbuster” drug. Other companies followed in Eli Lilly’s footsteps. By the time Pfizer and SmithKline Beecham launched their SSRIs in the early 1990s, however, the first doubts about the safety of the new drugs had surfaced. Reports about patients who seemed to develop intense suicidal preoccupations on them appeared in the literature. The FDA received several hundred spontaneous adverse event reports from prescribers—880 by July 1991 (FDA 1991, p. 167)—that seemed to confirm the published case reports, calling into question the main selling point on which the industry had staked its marketing of the new molecules.

   SSRIs, however, belonged squarely to the post-thalidomide era of drug development. They had undergone extensive clinical trial programs prior to their marketing. The findings from these trials were analyzed and meta-analyzed, peer reviewed, and published in leading medical journals, and did not appear to show that suicides or suicide attempts were any more frequent on the drug than on placebo (Beasley et al. 1991). Faced on the one hand with a stack of concerning but anecdotal reports, on the other with controlled trial data it had vetted and vouched for, the FDA chose to side with manufacturers. Since self-harm is a familiar complication of clinical depression, regulators in the US and abroad agreed with the companies that any suicides occurring early in a course of treatment were likely due to a worsening of the underlying illness, not to the drug designed to treat it (Healy 1999).

   Similar arguments shielded companies against lawsuits brought in US courts by families who had lost members to a suicide or act of violence involving a suspected reaction to an SSRI. The first such case to advance to trial was a suit filed in 1990 by the surviving victims of Joseph Wesbecker, a Louisville pressman who a month into a course of treatment with Prozac embarked on a shooting spree at his workplace that left 8 dead, injured a further 12, and ended with his suicide. Added in evidence in that case were the records of Wesbecker’s psychiatrist, who had last seen his troubled patient 3 days before the shooting in September 1989. Dr. Lee Coleman had noted his patient’s unusual agitation that day and, suspecting his medication might be the cause, recommended to no avail that Wesbecker discontinue the drug and check himself into a hospital. When Coleman’s notes were presented during the 1994 trial to Lilly’s chief scientific officer, Dr. Leigh Thompson, a one-sided insistence on the reliability of Lilly’s voluminous, FDA-reviewed data supplied the defense (Fentress 1994: 14 October, pp. 46–47):

   Paul Smith (plaintiffs counsel): So when the physicians have … said, “I think it’s related to Prozac,” your opinion is that they’re wrong?
   Leigh Thompson: They are wrong because I now have the benefit from a great deal of data and they were looking at a single patient.
   ……Qs and A’s…………….

   Here the uncoupling of the visible and the knowable that defined the new medical epistemology was invoked quite deliberately to rule out the sort of first-hand evidence—the eyewitness account by a person with direct knowledge of the facts—on which the law and the clinic both depend to probe the causes of actual injuries. Whenever trial data are brought to bear on the interpretation of a clinical case, the truth that is hidden away in the single suffering body becomes decipherable solely through the computed experience of multiple other bodies. This detour has a potent de-realizing effect that voids the single case of its significance, foreclosing the possibility of recognition and redress for harms or injuries not documented in companies’ own research about their drugs. In the Wesbecker case, the effort to import EBM’s rules of evidence—or at least a certain rigid interpretation thereof—into court had the intended effect. The notion that the clinical trial should somehow preempt the legal one did not go uncontested, but it helped Lilly avert a loss that could have had drastic effects on the future prospects of its bestselling drug (Cornwell 1996; Menzies 2005).

   Bearing witness
   When he finished medical school in Dublin in the late 1970s, David Healy opted to pursue research training and became involved in experimental work on serotonin reuptake, years before the commercial success of SSRIs made the serotonergic system a topic of widespread scientific interest. In Ireland and then at Cambridge in the UK, Healy became part of a tight research network that linked academic and industry scientists in the booming psychopharmacology field. When he eventually took up a position teaching and practicing psychiatry in Northern Wales in 1990, he was ready to embrace the new generation of antidepressants. “In the place in the UK where I was then, I was the kind of person who would be using these drugs earlier than most of my colleagues … I was keen to use them when they came on the market,” he told me, “and pretty early on I had two people who became suicidal on them” (2018, personal communication).Footnote1 In 1991 he published a report in Human Psychopharmacology describing these two cases involving Prozac/fluoxetine, one of the first pieces in the medical literature to outline a possible link between the new molecule and the induction of suicidal ideation.

   A few years later and many thousands of miles away, Cindy Hall, a junior paralegal at the Los Angeles-based law firm of Baum Hedlund, was at work on the second Prozac case to advance to trial, Forsyth v. Eli Lilly. Pharmaceutical litigation was new to the firm and required a considerable investment in time and resources from litigators uninitiated in the arcana of drug research and regulation. But the beginnings of the open Web made the mid-1990s an “exciting time,” in Hall’s words (2018, personal communication). Much of the biomedical literature was becoming available online through the NIH’s new PubMed database. In scouring it, Hall stumbled on Healy’s name in a 1994 Lancet editorial. Approached by Baum Hedlund in the spring of 1997, Healy agreed to draft a report outlining his expert opinion on the evidence in the Forsyth case, and a few weeks later flew to New York to be deposed in a hotel room by the JFK airport (Healy 2004, pp. 87–96).

   Given the centrality of clinical trials to the industry’s defense, plaintiffs faced a twofold challenge. First came the need to deconstruct clinical trial data. If indeed the alleged link between antidepressants and suicide was real, why did it fail to register in the extensive clinical studies undertaken on Prozac and other SSRIs? In search for answers, their attorneys reviewed millions of pages of industry records obtained in discovery and relied on hired experts to learn how to read trial data against the grain and reveal their hidden meanings for lay jurors. The documents lifted the veil on industry tactics such as the screening out of research subjects with a prior history of suicide or other risk factors for troublesome side effects, loose coding of adverse reactions, selective publication of trial data, or placement of ghostwritten trial reports in medical journals, all of which had the effect of complicating the retrospective identification of side effects in published studies. As one of the plaintiffs’ expert witnesses, Healy had privileged access to these documents. His role in the litigation gave him a unique vantage point on the myriad ways in which the drug industry shapes what we know and do not know about drugs, years before the economy of pharmaceutical knowledge—and particularly the funding, design, conduct, and publication of clinical trials—became the object of sustained scholarly investigation (e.g., Epstein 2007; Jain 2010; Lakoff 2009; Petryna 2009; Sismondo 2009).

   companies appealed to clinical trials not merely to say something of their drugs’ particular merits; rather, they invoked them in a quasi-ritual manner to sanction one kind of evidence and stigmatize another. In the way evidence-based medicine constructed this distinction, the hallowed kind happened to be the evidence produced and owned by the industry, the tainted kind the evidence supplied by patients and their physicians, or plaintiffs and their attorneys when they decided to challenge the industry’s claims in court.

   The relation of medical histories to medical science was at the heart of Healy’s testimony in Forsyth v. Lilly and in Tobin v. SmithKline Beecham, the first two trials in which he appeared on the stand.ad endorsed were causing unforeseen harms (Fontanarosa et al. 2004; McGoey 2007).

   In parallel, a new body of scholarship emerged to interrogate the pharmaceuticalization of health care, the redefinition of an ever-broader range of conditions as pathologies to be medicated, and the subtle shifts in cultural understandings of disease, body, and self, which these processes underwrote (Biehl 2007; Dumit 2012; Greene 2007; Hayden 2007; Lakoff 2005; Metzl 2003; Watkins 2007). It was in the course of the global cross-disciplinary conversation that developed on these topics in the mid-2000s that Healy connected with the two other co-founders of rxisk.org, both of whom worked in different fields and on different continents. Kalman Applbaum was an anthropologist at the University of Wisconsin in Milwaukee interested in the mutations of modern marketing, among the first to approach pharmaceutical companies as terrains of ethnographic inquiry. Applbaum and Healy formed a connection at a 2002 Harvard workshop on “Globalization and Pharmaceuticals” in which they both presented work on the marketing of SSRIs (Petryna et al. 2006). Dee Mangin, on the other hand, was a professor of family medicine at the University of Otago in New Zealand whose research explored the determinants of prescription patterns among general practitioners. She had been involved in a campaign to end direct-to-consumer advertising of prescription drugs in her country (then the only one besides the US to authorize the practice) and pursued research on the growing issue of polypharmacy, the concomitant prescription, especially in geriatric patient populations, of high numbers of medications whose adverse effects and interactions are typically underestimated. Mangin and Healy first met at the Inaugural Conference on Disease-Mongering held in Australia in 2006 and began collaborating shortly thereafter.

   From various positions, Applbaum, Mangin, and Healy were all first-hand witnesses to the ways in which medicine’s information ecology inclined clinicians toward therapeutic activism. Far from projecting a light without shadows on all effects of a drug, the controlled trials on which we rely to deliver the truth about drugs train their lens on one particular effect—typically the benefit that the manufacturer intends to highlight—leaving others, especially infrequent or unforeseen ones, in a statistical penumbra that shields those who make and prescribe drugs from accountability for the harms they may do. Seen from the vantage point of those harms instead of drugs’ intended benefits, our regulated regime of pharmaceutical knowledge production emerges in a very different light. RCTs, as Mangin and Healy put it in their “RxISK Manifesto,” now appear as the “gold standard to hide side effects” (2019). One result of the uneven evidence base they generate is “an invisible iatrogenic epidemic” responsible for “more morbidity and mortality than most chronic diseases” (Garfinkel and Mangin 2019). RxISK’s co-founders, therefore, viewed the need to bring these invisible harms into focus as a task with far-reaching public health implications. Their common work on a new medium and new method for investigating drug harms reflected a sense that the few high-profile side effects to come to light in the mid-2000s were no isolated incidents, but rather symptoms of a systemic issue that concerned to at least some degree all newer drugs. According to Applbaum, medications for such conditions as “osteoporosis, gastritis, diabetes 2, arthritis, IBS, allergies, etc.” loomed as large in the preoccupations of the project’s founding team as SSRIs and other psychiatric drugs (2022, personal communication).

   The idea of RxISK itself was born when Mangin, Applbaum, and Healy met jointly for the first time in Saint-Louis, MO, in 2010. Following 2 years of drafting and redrafting, the blueprint for rxisk.org emerged around the core conviction that the best evidence on drug-related harms would be obtained from those who experience them. A further hope, Healy told me, was that RxISK could live as a project “powered by people who had lost children or parents or partners to these drugs.” To safeguard the endeavor’s independence, its creators established RxISK as a limited liability corporation unaffiliated with any university or other institution. Unlike corporate eHealth sites, it generates no revenue by way of advertising, reselling user data, or recruiting for clinical trials (Tempini and Del Savio 2019). Funding for the project, which required approximately half a million dollars in initial layouts, has come from fees Healy continues to receive for his legal work, personal contributions of the founders, and third-party donations. A pathbreaking contribution to the site’s creation came from Peter and Julie Wood, a Toronto-based couple whose elder son took his life while treated with an antidepressant. A retired Ernst & Young executive with extensive experience helping start-ups off the ground, Peter Wood offered managerial as well as financial support, taking over the project’s business administration in the latter half of 2011 and steering it from a mobile app model to a website, which was registered the following year under the domain name rxisk.org.

   The anecdote digitized
   . A vague but pervasive sense that the internet was, in Healy’s words, “a tool that might break things open, might be a force for consumers to get their voices out,” informed conversations on the future of drug safety across government, industry, and activist constituencies
   . Medawar began scrutinizing the dynamics of drug regulation during the 1980s in his role as director of the Public Interest Research Centrean independent research group established in London as an offshoot of Ralph Nader’s Public Citizen. Equipped with a computer, a “128k modem,” and an early “strategic sense” of the internet’s potential as a tool to “exchange, information and consolidate experiences,” as he put it in a 2002 interview with Healy, Medawar scoured discussion boards to which antidepressant users turned in search of community (Medawar 2002). In 1997 he published “the Antidepressant Web,” a study that drew in part on material collected from those discussion boards, and set up a website at socialaudit.org.uk to disseminate his research findings and host further conversations about the unacknowledged harms of SSRIs (Medawar 1997). Healy, who became acquainted with Medawar and his work that same year, described him to me as the “prime mover” in the field, “the one who launched that idea, the whole way of thinking that there is both underuse and overuse of drugs, that benefits get hyped a lot and harms are being minimized.”

   After Secrets of Seroxat aired in October 2002, BBC journalist Shelley Jofre and Panorama producer Andrew Bell invited Medawar and Oxford pharmacologist Andrew Herxheimer to review the nearly 1400 messages emailed by viewers to the channel in the wake of the broadcast (Medawar et al. 2002; Medawar and Herxheimer 2003/2004).Footnote2 The emails formed from the authors’ own admission a “highly skewed” dataset. They came from a self-selecting group of viewers with overwhelmingly negative experiences on GSK’s drug. The absence of random sampling and of a control group made it unsuitable for any estimation of ratios and frequencies. Many emails lacked key information such as the user’s age, sex, dosage, or diagnosis. They were quintessentially “anecdotal” in the sense of evidence-based medicine. Nonetheless, the goal of the study was not to draw quantitative inferences from a representative sample, but to convey what the authors called in a telling ethnographic metaphor “the value of ‘immersion’” in a rich, albeit haphazardly assembled, collection of narrativized accounts (Medawar et al. 2002, pp. 161–162). Apprehended holistically, the first-person accounts cited at length throughout the paper yielded a pregnant picture not only of the reality of these effects, but also of their underappreciated impact on the quality of life of those who experienced them—“what withdrawal problems, weight gain, suicidal behavior, or loss of libido actually mean in the context of personal and social life” (Medawar and Herxheimer 2003/2004, p. 15).

   In the UK as in most other countries at the time, drug authorities solicited adverse event reports exclusively from health professionals. Pharmacovigilance relied on physician reporting, not patient reporting, of side effects. “We believe the underlying reason for regulators’ disdain,” Herxheimer and Medawar wrote, “is their prejudice that what a patient reports is ‘anecdotal’ and does not constitute ‘scientific’ evidence, and therefore should not be accepted without confirmation by a professional.” To put that prejudice to the test, Herxheimer and Medawar examined the self-narratives emailed by Seroxat users to the BBC alongside reports filed by physicians with the MHRA regarding the same suspected side effects. The side-by-side comparison demonstrated how, under the delegated system favored by drug regulators, “the patient’s report is filtered through the doctor’s own expectations and his or her interpretation of what is credible, serious, relevant, or worth reporting.” As “translation[s] in medical shorthand of what the patient says,” doctors’ reports are terse (40–75 words per report on average) and stripped of any textured description of the lived experience of side effects and of their consequences on relationships, employment, or mobility that figured so saliently in the BBC emails (Medawar et al. 2002, pp. 167–168). In sum, the arrangements regulators typically depend upon to monitor the safety of drugs lead not only to underreporting—a well-known issue, as authoritative estimates generally put the proportion of reported events at somewhere between one and ten percent of all reactions serious enough to result in hospitalization (Hazell and Shakir 2006)—but also to widespread misreporting that yields a flattened and distorted picture of patients’ experience with their medications.

   These findings provided a foundation for RxISK’s design. As Applbaum put it (2021, personal communication):

   Research we trusted observed that patient reporting yields data as good or better for tracking ADEs than what doctors report—provided you know how to analyze it. Patients are more motivated to provide details about their experience in both medical (what other drugs they’re taking at what doses, compliance, what conditions they suffer from, what supplements they may be taking, and so on) and experiential (quality of life questions—“what was your life before and after you started taking drug X?”) dimensions.

   The emphasis on patient reporting sets RxISK apart from official pharmacovigilance schemes. Nevertheless, the main tool of pharmacovigilance remains the computerized mining of large quantities of ADE reports. In this approach stories are useful inasmuch as they generate “data blips” in automated searches, and reports filled out by physicians, whose practice is to abstract recognizable code words from idiosyncratic patient accounts, remain the most easily exploitable. As a result, even those drug agencies which allow consumer reporting of ADEs do little to encourage it. Portals for patient reporting were grafted onto systems designed for professionals. On the FDA’s crowded website, for instance, a user needs to click through four successive links, three of them tucked below the fold, to gain access to the agency’s reporting tool. Of the reports submitted directly to the FDA in 2020, therefore, only one in five came from consumers.Footnote3 All reports are entered into the same database and processed according to the same methods (Anderson and Herxheimer 2013). Rxisk.org, by contrast, interpellates the patient as a privileged informant about drugs. A link to RxISK’s reporting tool features prominently on the site’s home page (Fig. 3). Rxisk.org’s iconography, “About” page, and blog convey with various levels of directness or detail the reasons for the systemic misrecognition of drug-related harms. The argument captured in the home page’s headline “No one knows a prescription drug’s side effects like the person taking it” is reiterated in various forms throughout the site: “If you think there is a problem, you are probably right”; “Make your voice heard,” etc. Each one of the site’s ancillary functionalities is accessible in a single click through icons located on the home page.

   figure 3
   rxisk.org homepage. The online reporting tool is accessible in a single click through an icon located on the homepage (highlighted area in the lower right corner). So are each one of the site’s related functionalities (icons on the middle left side of the page)

   Healy compares the documentary work of RxISK to “picking up the junk.” Scraps of information about drugs litter the Web, amounting to little more than debris as long as they remain scattered across multiple social media sites, blogs, comment sections, and the like. To become recyclable the scraps need to be salvaged, sorted, and stored in a single place. On RxISK, users submit their side-effect stories through a structured reporting tool, which, in addition to a free narrative account of the reaction, solicits basic metadata needed for the proper storage, retrieval, and interpretation of the report (e.g., sex, age, country of residence, name of the suspected medication, dose and duration of treatment, treated condition, concomitant medication, etc.). The online reporting form, in other words, informs rather than formats the account, removing none of its texture but ensuring that it is recorded with the data points that make it usable from a forensic-clinical standpoint (Fig. 4). Currently, the website receives about 2000 such reports yearly, about 30% from users in the US, 40% from Europe, and the remaining 30% from other locales. Although the RxISK database, compiled through the unremunerated labor of a handful of scholars, operates on a smaller scale than the databases of national regulators, it is in Healy’s estimation the world’s largest independent repository of patient-generated side-effect reports.
   Fig. 4
   RxISK’s reporting tool
   Full size image
   The relative smallness of the project is in keeping with an epistemology that locates the moment of discovery in the intuitive elucidation of patient narratives. RxISK investigates side effects not through computerized mining of vast amounts of standard-issue reports, but through what Herxheimer and Medawar described as immersive close reading practices. One of the first effects to be elucidated through reports submitted on the site came to light as a result of a single patient telling her story in unusually rich detail. The patient, a hospital employee in the south of England named Anne-Marie, was prescribed Seroxat following the sudden passing of her father. citalopram, another SSRI, only to see her troubles worsen.alcohol dependence and the serotonin system. Pursuing the lead, she eventually got her doctor to prescribe mirtazapine, a non-SSRI antidepressant, instead, and almost immediately the cravings vanished (Anne-Marie 2012).

   Having encountered Healy’s name during her online searches, Anne-Marie contacted him just before the launch of rxisk.org. He saw in her story a striking illustration of the new site’s purpose:
   . The only people who agreed with her—they didn’t agree publicly—were pharmaceutical companies who were working on drugs like mirtazapine as treatments for alcoholism, but the world didn’t know about this…

   In 2013 Healy partnered with Anne-Marie to publish a report about her case in the International Journal of Risk and Safety in Medicine (Healy et al. 2013). The following year, 2 years after RxISK’s launch, the same journal published a co-authored paper examining 93 further cases of SSRI-induced alcohol dependence drawn from the RxISK database, making these the first two publications to outline this unreported risk of SSRIs in the medical literature (Healy et al. 2014).

   Medicine remediated
   Every platform dedicated to collecting ADR reports articulates a certain metanarrative about itself, a story about the value of patient stories and the fate of such stories in a broader narrative of vigilance and discovery. In the metanarrative of drug agencies, the normal trajectory of an ADR report is unidirectional and ascending. On the ground level, a patient speaks up, either by submitting a report directly to the regulator or, preferably, by speaking to their physician. The physician is expected to act as a mediator, a trained interpreter of their patient’s complaint and diligent informant of the regulatory authorities, by transcribing credible complaints and forwarding them to the regulator. Agency staff are then tasked with screening and encoding the reports and entering them into a national adverse event database. Abstracted and broken down in data bits, the reports are ready to be queried by computers programmed to extract a signal from the noise of patient complaints. For both patient and physician there is a reassuring finality to the process. Once they have spoken up and filed a report, their report is filed away in competent hands. A thank you note is emailed back to the reporter, signaling that their part in the process has already come to an end (Fig. 5).
   figure 5
   Email acknowledgment of receipt from the FDA’s voluntary adverse event reporting system for consumers
   Full size image
   That metanarrative overlaps in substantial ways with the kind of stories told Platforms generate participation by selling visions of a future in which the personalization of health care comes not from a personal encounter with a clinician but from the fine-tuning of artificial intelligence through the exponential accumulation of personal health data. In the rhetoric of big data, scale is another way to arrive at the kind of totalizing data closure which randomization achieves in formal drug trials.

   The story RxISK tells on the roles of patient, clinician, and data in spotting side effects is very different. Research on professional ADE reporting systems has demonstrated just how remote the notion of the physician as interpreter of their patients’ complaints and informant of regulatory bodies is from the realities of medical practice. Reporting rates are strikingly low, while those reports that do get filed are frequently inadequate—more so in fact than those submitted directly by patients (Anderson and Herxheimer 2013; Avery et al. 2011). In surveys patients routinely note physicians’ resistance to contemplating that the medications they prescribe might be causing unanticipated problems. Those who developed suicidal thoughts on an SSRI, for instance, were often advised to stay on their drug or increase its dose because antidepressants were meant to prevent suicide (FDA 1991, pp. 30, 41). Likewise, when Anne-Marie K. told her physician that she suspected paroxetine might have a role in her drinking problem, he dismissed her concern on the grounds that paroxetine was the kind of medication given to recovering alcoholics; the drug could not be causing the problem it was supposed to treat. In consequence, Healy notes,

   most people are very nervous about bringing problems to the doctor. If the doctor puts you on a drug and something is going wrong, even people from the United States who have a reputation for going in and being awkward and bolshie with doctors, in actual fact don’t. If there’s a particular problem they’re having on a drug, they don’t tell the doctor.

   RxISK’s starting point is therefore to acknowledge the dead ends of doctor–patient communication and to look for remedies to the misrecognition of side effects not in better informatic tools for the downstream processing of filed ADE reports, but in an overhaul of the relational structure in which the side effect is originally meant to be reported and recorded.

   A report filed with RxISK is not merely filed away in a database for future review by analysists other than the patient and their clinician. Based on the user’s answers to a number of “causality questions” on the site’s reporting form, every report is assigned a “RxISK score” that gives a preliminary estimation of the likelihood of a link between the drug and the reported injury. A .pdf copy of the report is emailed back to the reporter along with its assigned RxISK score and a recommendation to print out the report and bring it to their treating physician. Ideally the act of reporting is only the first step in a recursive inquiry that brings the patient back in front of the doctor, and the authentication and adjudication of a report is a process that unfolds both on- and offline:

   We thought that if we could get [patients] to print a RxISK report […] and bring the report to the doctor, it would equalize the power relation a bit. You know if I go in and tell you I’m having a problem and you blow me off and throw me out, then there’s no record of it. It’s just my word against yours. But if there’s a RxISK report brought to the doctor, and they know this has been printed off an expert website and there’s a record of it, then the doctor should be less likely to blow you off.

   To close the feedback loop, the website also added in 2017 a portal allowing doctors whose patients brought them an RxISK report to log back into the website and, using a unique identifying code generated for each report, to submit their own observations on the likelihood that their patient’s complaint is indeed treatment-induced (Fig. 6). Envisioned in this way, the platform’s value is not primarily in the content it accumulates; nor are RxISK scores intended to deliver a final verdict on the truth value of any one report. RxISK scores and RxISK reports are better thought of as boundary objects whose circulation facilitates new relational formations across the digital divide (Star 2010).

   Fig. 6

   RxISK report cover page. A RxISK report is emailed back to anyone who reports a side effect on rxisk.org with the following note: “This report is designed to be used in conversation with your doctor or pharmacist on the possible linkage between the suspect drug and the primary side effect. You can also invite them to add to your RxISK report to indicate whether they agree that there is a linkage: https://rxisk.org/hcp-comment/.” As noted, the RxISK score is calculated based on questions that evaluate the strength of a link along axes laid out in Austin Bradford Hill’s criteria

   RxISK’s ongoing campaign to bring visibility to the problem of drug-induced sexual dysfunction showcases this use of the Web to document side effects in a set of reconfigured relations.. Given its deep impact on patients’ well-being and relationships, enduring sexual dysfunction is a clear example of a drug-related harm of which patients are acutely aware, but which they are reluctant to disclose to physicians. To push the issue onto the agenda of the FDA, the UK’s MHRA, and the European Medicines Agency (EMA), Healy and Mangin submitted in May 2018 a petition signed by 22 specialists of PSSD (post-SSRI sexual dysfunction) and PGAD (persistent genital arousal disorder) requesting a review and redrafting of the drugs’ labels. Low reporting rates and a high proportion of anonymous reports, usual obstacles to the collection of credible evidence on drug-related harms, were further heightened by the sensitive and stigmatized nature of the condition. As a way around those obstacles, Healy and Mangin contacted over 300 individuals who had submitted relevant reports on rxisk.org In May 2019 the Agency completed its review and ordered labeling changes to reference reports on sexual dysfunction enduring after discontinuation of the treatment (RxISK 2019).

   Achieving this triangulation between patient, physician, and website is undoubtedly the most elusive of RxISK’s goals. As Healy and Applbaum concede, the site has had considerably more success in engaging users than prescribers of drugs (personal communication 2018, 2021). Participation of physicians in the PSSD/PGAD campaign could be secured only by means of a hands-on outreach effort conducted via patients. That campaign, in other words, enacted on an experimental scale what remains at this point a mostly aspirational model for a different way of treating patients and protecting them from harm. So RxISK too shares with other eHealth sites a certain promissory logic, inviting participation from users by conjuring up a vision of a medical future that has yet to come. Its distinctive identity lies in the kind of medical future that is being envisioned, one in which digital tools would be used not to bypass the clinical relation but to reconfigure it in an effort to render physician and patient more present to each other.
   In the end, the broader meaning of RxISK—of its achievements as well as its limits—is perhaps that there is no single method or single locus for the discovery of side effects. Side effects are, by definition, unintended and unsought; they occur out of focus and out of order, in the blind spots of what Kuhn called normal science. As such, every one of the major side effects uncovered in the past three decades has its own unique revelation story, involving some serendipitous deviation from the straight path of drug development and some subversive use of evidence collected for other purposes.
   There is no question that certain categories of side effects—particularly those with long latencies and no intuitive connection to a drug’s indication or immediately perceptible effects—will only be detected in epidemiological investigations,………………..

   Yet, as RxISK demonstrates, other varieties of side effects may require other methods to come into focus. Self-reports by medicine takers have proven critical in documenting adverse reactions that are felt by patients but produce no unambiguous signs in common diagnostic tests. The various neuro-psychiatric disturbances caused by SSRIs are typical of those effects, which tend to be described (and dismissed) as (merely) subjective. This circumstance helps explain why SSRIs and other psychiatric medications continue to loom so large on rxisk.org, even as the site welcomes reports about the suspected harms of any prescription drug. Another explanation of their continued prominence on the site lies in Healy’s own trajectory. His long-time involvement in the struggle to bring SSRIs’ hazards to light and the influential critique of the pharmaceutical industry he articulated in the process put him at the center of an activist network that was poised to engage with a project like RxISK. In that regard, the hidden dynamics behind rxisk.org may be compared to those animating a website like erowid.org, the online information exchange on psychedelic and other mind-altering black- or gray-market drugs (Langlitz 2009). Both are undertakings seeded and supported by a virtual community of users mobilized in some way against official drug policy and normalized regimes of pharmaceutical knowledge production.

   It is precisely because the discovery of side effects must often happen against or outside the normal paradigm of drug research that the Web can be a uniquely generative medium in matters of pharmacovigilance. What renders the Web suspect as a source of evidence—the uncredentialed nature of its users and unsystematic manner of data accumulation—is also what makes it the forum of choice to voice experiences not reflected or recognized in constituted bodies of knowledge. As such, the generativity of projects like RxISK will hinge on the Web’s continued ability to catalyze not only genuine activist sensibilities and their specific forms of expertise against the encroaching logic of data capitalism, the spread of evidence-free conspiratorial thinking, but also the removal of unsanctioned knowledge which an ill-defined concept of misinformation may seem to justify………………..

   Notes (And references)
   When not otherwise referenced, subsequent quotes from David Healy are drawn from personal communications with the author.

   University of California, Riverside, Humanities and Social Sciences Bldg. 5503, 900 University Ave, Riverside, CA, 92521, USA
   Correspondence to Antoine Lentacker.
   Ethics declarations
   Conflict of interest
   The author states that there is no conflict of interest. I have no competing interests, financial or intellectual, in the research.
   Ethical approval
   Research for this article was reviewed by the University of California, Riverside IRB (IRB-SB number HS 20-008) and deemed exempt under 45 CFR 46.104(d)(2).

   Accepted
   21 November 2022
   Published
   22 December 2022

   Reply

2. Anne-Marie says

   February 12, 2023 at 9:25 pm

   Well I just tried twice to put a link to this story on blue light and was banned for spam.

   I am not even able to contact the administrator to tell them it isn’t spam because I can’t get back into the website.

   If there is anyone available to do this for me I would be so grateful. Thank you.

   Reply

   • Johanna says

     February 13, 2023 at 3:46 pm

     I haven’t looked at Bluelight in ages, but I did this morning! There are two people listed who can be contacted by email:

     Questions or problems with the site go to TheLoveBandit@bluelight.org. Or you can contact the executive director at Monica@bluelight.org.

     Best of luck! The site itself seems to be buggy right now — I tried searching their “Trip Reporter” and got a bunch of error messages. Maybe they put some kind of policy in place against posting links to other sites — a dumb idea but many sites have it now.

     Reply

   • susanne says

     February 13, 2023 at 6:28 pm

     Hi Anne-Marie Hope you are doing ok. Is it possible you are on some kind of ‘black list’? I’ve successfully left three messages on different threads . will let you know if they get deleted. Can you say what it was you wanted to put and I can try it with my own name – just registered as susanne.

     Reply

     • Anne-Marie says

       February 14, 2023 at 12:16 am

       Hi Suzanne, I was trying to put a link to this post on there but after posting I got a small delay and then a message to say I was now banned for posting spam.

       Im wondering if it’s because I’ve put a link in to another website. I don’t think they like you doing that.

       Reply

   • susanne says

     February 14, 2023 at 7:55 pm

     Hi Anne-Marie
     Same problem! There was nothing I wrote that could be read as spam – no links I think it would be a waste of time to contact the administrator myself Better options elsewhere I guess.

     ‘Oops! We ran into some problems.
     You have been banned for the following reason: Spam. Please contact the administrator if this was done in error..’

     Reply

3. Nick says

   February 13, 2023 at 4:36 pm

   The below seems to have been missed by a lot of people, but moves us forward in understanding how Citalopram can cause alcohol addiction:

   https://www.hindawi.com/journals/psychiatry/2022/5663274/

   The Effects of Citalopram and Thalamic Dopamine D2/3 Receptor Availability on Decision-Making and Loss Aversion in Alcohol Dependence

   Reply

   • Anne-Marie says

     February 14, 2023 at 12:22 am

     Thanks Nick I haven’t seen this one before. It’s very interesting, I’m glad their doing these studies. It’s taken them a very long time though. I can confirm he is right about loss of impulse control.

     Reply

4. Bob Fiddaman says

   February 15, 2023 at 11:56 am

   David,

   I was once told that the Paxil product monograph mentioned alcohol craving. Unfortunately, I was informed, only prescribers have access to this monograph.

   Reply

   • Dr Pedro says

     February 15, 2023 at 6:09 pm

     Wrong twice, Bob 😉

     Paxil has been associated with the adverse reaction of “alcohol abuse” in up to 1% of patients, since at least 2005.

     And the monograph is available to all.

     https://ca.gsk.com/media/6205/paxil_pm_en.pdf

     Best wishes

     Dr P

     Reply

5. susanne says

   February 16, 2023 at 5:27 am

   0800 326 5591|info@arlingtoncemetery.org This is a snippett which gives wrong advice in some respects (egSSRIs are not known to have very serious side effects)…….. but advised their members that there have been recent reports of SSRIs inducing alcohol cravings.

   This website is dedicated to covering news related to addiction and mental health issues as they apply to veterans and serving military personnel. We are not affiliated with the US Government nor the official Arlington Cemetery. We are here to publish information that aims to support those affected by mental illness attributable to their service in the military

   ANTIDEPRESSANTS AND SSRIS AFFECT ALCOHOL CRAVINGS
   22-May-2023
   While there is evidence for antidepressants consistently alleviate depressive symptoms in patients with co-morbidity alcohol dependence and depression, some groups of patients may show an increase in alcohol consumption. SSRIs are not known to have very serious side effects but there have been recent reports of SSRIs inducing alcohol cravings.

   Research has found that antidepressants can intensify the effects of alcohol, or can lead individuals to increase their alcohol consumption and become heavily dependent on alcohol. SSRIs induced alcoholism is likely to be relatively common but reported as being rare. This is due to under diagnosis and treatment due to assumptions of those who are considered depressed having an increased risk of developing an addiction to alcohol as a form of a coping mechanism..

   Recent reports have suggested that an increase of alcohol consumption is found in those who are not classified as dependent. This means that those who were not alcohol dependent become dependent due to changes in their brain chemicals. Some research has linked SSRI (such as Paxil) to increased alcohol cravings and abuse.

   This risk might be higher in people who carry certain genes that already make them more susceptible to alcohol abuse. For example, the 5-HT3 serotonin receptor is rapidly enhanced by ethanol (chemical found in alcohol) that releases dopamine in the reward system (Enoch, Gorodetsky, Hodgkinson, Roy & Goldman, 2011). This serotonin transporter gene has been linked to excessive drinking, alcohol dependence and impulsiveness.

   Reply

6. Anne-Marie says

   February 16, 2023 at 2:45 pm

   A few comments..

   Kim Marriott
   Thank you. This happened to me and then I found out how common it was. Consultant never heard of this side affect of course.

   Janet Raven
   Thankfully she was able to spot the connection. Must admit I had never heard of it. But I would never gaslight anyone. Can’t say that about the doctors!

   Pascale Navarro
   Me. 100%. The minute I started taking an SSRI I became a heavy drinker. And the whole train wreck lifestyle that comes with that. All the way until I tapered off, which took an excruciating 3 years. Those dammed drugs took all of my 30s from me.

   Dave Cohen
   I lost a wife to this exact issue. on antidepressants cause big alcohol cravings and xxxxx.

   Reply

7. susanne says

   February 17, 2023 at 4:37 pm

   Published by an independent charity of veterans by veterans
   Arlington Cemetery. Removing the Stigma About Addiction for Current & Former Military Personnel
   small extract – some of the info is conflicting about the effects of SSRI’s on alchohol use but this is the final statement)

   This website is dedicated to covering news related to addiction and mental health issues as they apply to veterans and serving military personnel. We are not affiliated with the US Government nor the official Arlington Cemetery. We are here to publish information that aims to support those affected by mental illness attributable to their service in the military. It really does no matter which branch of the military those suffering from mental issues
   HOW ANTIDEPRESSANTS AND SSRIS AFFECT ALCOHOL CRAVINGS
   22-May-2023 (the date is odd – maybe an error )
   ________________________________
   Recent reports have suggested that an increase of alcohol consumption
   is found in those who are not classified as dependent. This means that
   those who were not alcohol dependent become dependent due to changes
   in their brain chemicals. Some research has linked SSRI (such as
   Paxil) to increased alcohol cravings and abuse.

   Reply

8. Lisa says

   February 25, 2023 at 7:20 pm

   I have been spending a lot of time thinking about alcoholism and psych drugs lately, and how the two played me against myself in the first years of being on so called mood stabilizers. I have been wondering was I ever an alcoholic?

   I found my way to AA because I was so sick.
   I never really thought of myself as an alcoholic- until I was on the meds. After meds: mistakes, problems and family drama got mixed in with intense anxiety, cognitive problems, depression on another level and confusion about it all. All along I was led to believe the drugs were good for me. I was taken care of by a doctor, very important person, – and after I received her help, I just assumed that my problems were so big and my childhood was so bad that I got super sick from it. When I was in the clinic the standard 3 weeks where I was put on meds, – I was also encouraged to look at “the program”. 2 years later I stopped drinking and sat in AA for a year and a half before I got a sponsor- I asked her- do you really think I am an alcoholic and she said yes- I could fit in the category alcoholic- I remember saying I often felt like I wished I was a man when I drank (after I was on meds), because I really felt like beating someone up. I had started drinking in a bottomless way. Anxiety was so intense it sometimes drove me to drink. I also felt rough, – like I could go to a bar alone, that was not something I usually did. I have some terrible memories from this time just feeling like I was driven by something. Driven to drive places- fast (with Neil Young singing to me about the unknown legend who collides with the very air she breathes super loud) arriving only to break down in tears feeling like all was lost. (I cant stand that song now.) Driven,- to run to the 7 eleven at night on main road, and running home with 2 bottles of wine and a sweater in my pack, to not damage the bottles. Driven – full of fear and trying desperately to get better and solve problems- psychiatrist here- the psychologist she decided on there- but I just kept falling further into disaster. … I drank a lot of wine – and triple vodka sodas. I also lost many friends in that time. I changed from being a fun person people liked being with, to being difficult, weird, creating conflict and not being pleasant in addition to being the drunkest woman at the party and the last one to leave. One time I drank whilst babysitting my friends’ children- the kids did not notice as it was after they had been put to bed, but still. I only felt terrible about it much later. Losing friends was normal in AA as it is considered a good thing to swap drinking buddies for recovery friends. But my friends had been family people, people I had studied with, people I had hiked with, people I loved. My hangovers were intense, I never turned to the drink in the mornings like I heard a lot of alcoholics did, but after meds -I understood rock bottom. I lived in rock bottom as the doctor kept changing those meds. I thought AA perhaps was the solution. At least it was something I could do and hold on to. I would do anything if I could stop feeling so sick.

   I have been sober in AA for 11 years now. Now I think that the one good thing that came out of being put on the meds is AA. AA is full of loving people, warmth and genuine care. I had a fallout with my sponsor because I blamed her for guiding me to making a decision that my inescapable regret is hooked on. It’s soon 2 years since I spoke with her. She wrote me a few weeks back and said she missed me – I took the opportunity to do a ninth step with her (saying sorry I broke contact) and I also explained about the dysphoria that I have because of the drug and that it is why I regret so strongly and blame myself in such an exaggerated way and I mentioned how hard it is to taper the drug. I never heard back. I wrote another friend yesterday and tried to explain that the AA narrative does not work on psych drugs because the 12-step program requires willingness- you have to be willing to stop the drink- and then the narrative is that everything will only get better. You will live a full and rich life by paying your bills and being a contributing member to society in whatever way you can. You will be happy if you are a lawyer or a garbage man as long as you adhere to the steps and the principles. This is just untrue when you are sick from psych meds or withdrawing from them. There is no willingness in the world that can drag me out of dysphoria – and living a good life- which I do by the way. I do my job- I pay my bills- I save some money- I raise my child and I know I love my husband and my family more than anything- I just don’t feel it very much. Gratitude is unnatural in dysphoria. No one in AA wants to talk about this with me. They reply to me with standard lines about not knowing what came first alcoholism or bad moods or chemistry- and that life is hard. Yes, life is hard. I have been wondering why it was /is so extremely hard for me. I miss AA. I have stopped going to meetings because I cannot talk about psych drug withdrawal. I cannot speak openly about my life, as I have a problem that I should keep secret, push down, not speak of- if I do, I am the crazy one. So, I shut my mouth. Keep holding on. If I just do my routine, my job, make supper, go to bed early- maybe I will survive this.

   When I read let them eat Prozac and when I came to page 82-83 I almost could not believe it. It is hard to understand that the research shows what it shows – and that I was still put on this type of drug- 10 years after the book was published! Here is an extremely precise and accurate description of how I have felt for the past 2 years particularly whilst tapering, it says: “people felt awful- but they could not believe the drug was causing this” -every day I feel awful and every night I have to ask my husband, is it really the drugs that is making me feel like this? Is it really possible? Every night he tells me that it is the drug. “They had begun to think about some of the worst moments in their life- broken relationships- personal memories of unhappy times- seemed to be flooding back- and they seemed to hold themselves responsible for feeling the way they did now aswell” This is exactly how I feel- and it is precisely like its flooding in over my mind and takes over, colors everything. I see everyone and everything through this very grim filter. I remember terrible things- things I had put behind me ages ago is now at the forefront of my mind all the time- We have changed our lives several times- not seeing my real problem was the drug I was on – rather than the environment I was in. I am living in that state of mind when I felt terrible- all the time. The funny thing is that the absolute worst time in my life came when I started with the drugs. Terrible things aren’t happening to me now. I am living in that state of mind when I felt terrible- all the time. (Add a few more withdrawal symptoms and the devil could not ask for a better hell).

   Richard Bentall and the others are very lucky. They only took a few pills. They were afraid they were permanently injured- from a few pills. I have been taking this pill day in and day out for over a decade. I wonder what injuries I have. When I ask for a brain scan my doctor does not know what to say. I guess there is no form that he can use, no box to tick that says: possibly damaging brain changes from 13 years on medication given by doctor to cure a disease of the brain that she never had. I used to be a very social person- before I started and tapered these drugs, I loved being social- I didn’t have to ask my husband to interpret every social moment for me. I used to be independent and strong. Now my husband must make the decisions for us as I am incapable of doing so. It is hard for me to be objective analytical and quick. I am so obsessed about if people can see how terrible I feel. Can they see that I am on psych drugs? I feel like I look like I am 120 and I feel that I smell and look just repulsive. My GP thinks I have social anxiety. It feels like a very controversial thought – to think that you have been poisoned by medications prescribed by qualified doctors.

   I do smell repulsive by the way – as I took up smoking the first time I tried to taper the drug. I had akathisia at that point. I remember getting that first box and how I just broke this very important promise I had made myself. Knowing very well how incredibly hard it had been for me to manage to stop. smoking did not help anyway as I ended up walking back and forth whilst smoking. I have given up giving up smoking whilst dysphoric. Its somehow just not possible. I ask myself how can I do such a thing when I have a young child? I told my doctor a while back- if I die from some terrible cancer, it will not be the cigarettes that killed me, it will be the drug. He laughed at me and I think he thought me common. I would have been 11 years smoke free now, if it wasn’t for the drug. At least I know now, that my doctor has no idea about how to taper. When I tell him my plan, he thinks it sounds great. But I know that its all up to me and my husband. I appreciate that he is kind and has a good heart regardless of how he sees me and my problem.

   I love AA it’s a good fellowship of people who want to help each other and reflect upon their lives trying to be the best that they can be on a daily basis. One thing is being powerless over alcohol, being powerless over psych drug dependence and dysphoria is quite another. My AA friends, – if they do engage with my problem, drop a quote about chicken and egg. I want to know the truth and the truth turned out to be a bit more complicated. AA is about making it simple,- so AA cannot look me in the eye. AA does not understand what to do with someone like me. AA don’t like me very much now. I am bitter. AA tells me bitterness is wishing someone else dead and drinking the poison yourself. Yes, I am drinking the poison myself- every night, physically, literally drinking poison. I have worked through my issues. I have forgiven my father- ages ago. At his death bed I sang hymns for him as the sun shone in through the hospital window, and I felt a strong sense of peace after his beautiful funeral. I have had the best therapist in the world. Pity she did not know anything about psych drug effects and side effects. She always encouraged me to get off the drugs though. And she never believed I had an illness in my brain. She always told me it would be a real victory when I got off the drugs. I wish she had more of an idea of how incredibly hard and long this fight is. When I came into AA my main character defect that my sponsor pointed out to me was self-pity. Again, I am the queen of self-pity, but I have not had a drink. I am trying to stop a drug. That is causing me misery. “Resentment is the number one offender. From it stems all forms of spiritual disease- for we have not only been mentally and physically ill we have been spiritually sick” it says on page 64 in the big book of AA. Stopping drinking and practicing the steps is supposed to heal us. AA is promising this. I have done journaling like a superhero, I have practiced my affirmations and self-compassion exercises, I have figured out my fault (also in ending up on the drugs), and believe me, I have regretted it and I have confessed my sins and changed my ways of course, and I have prayed and I still pray. However, no willingness or practice of this sort can drag me out of the dysphoria I am in. On every yearly sobriety coin that they give out in AA, it says: to thine own self be true. The words of the ancient poet. It means don’t do anything that goes against your true nature- be true to yourself and you will be true to others. The drug I am on is taking this ability away from me. I made AA the language of my heart. There is no language for psych drug withdrawal or injury, and psych drug withdrawal is making me feel like I don’t have a heart. The drug – for me now-is nothing but an insult to God –the devil really has a great business and it is appalling – that Dr. Healys books are not known by everyone! Lawyers and sanitation workers alike! So that we who are wrecked by pills -also could be understood-also could come out- also could be seen as humans who have been hurt. So we could all understand the narrative we are part of that it is about money and profit for companies who capitalize on human misfortune and distress and create sickness from it. I want to change the smith’s song to shipwrecks of the world unite and take over, I want to march on the street and protest in front of the parliament. But I must keep hiding, so that the others cannot see how ugly I am. The grand narrative of this oppression truly is so shocking when you are a victim of it, how do I rise from these ashes. Is it even possible? I pray, I pray. But not the serenity prayer. Because I cannot change nor accept this injustice. I dream about a truth and reconciliation commission where I could testify. The book country of my skull ends with the words. I am changed forever- I want to say forgive me forgive me forgive me – you whom I have wronged. I want the doctors who hurt me so much to say this to me.

   Reply

   • mary H says

     February 27, 2023 at 3:35 pm

     Wow, Lisa – this is a most compelling outpouring of your deepest thoughts which will touch all who read it. It is desperate and soul-searching. How can we (humans) have ever created a so-called “medication” which can inflict such terror in a person who did nothing worse than “trust a doctor”? For those who get trapped in their poisons there is nothing worse than finding that actually there is no way out. Doctors are quick enough at showing and helping you on the way in but when it all turns sour and you look for a way out, they are nowhere to be seen.
     You ask if it’s possible to rise from these ashes – I say YES, but I don’t think it’s possible whilst you keep kicking the ashes. That just reignites the fire that burned you first time round. By repeating – to yourself and others – all that you have gone through, you are fanning the embers and that fire will not go out.
     You have a baby, a husband, a home, a responsible job and live in a lovely country. If you heard that, as a description of a person – would you think that it was all true because they were a bad person? I bet you would not! You have so much to be grateful for but your heart, at present, is not able to accept that. Negativity, anger and severe disappointment are crushing – the devil will love them as they will keep you powerless. Positivity, kindness ( to self) and hope leads to that door out of all the suffering that you endure at present.
     There is no magic wand, no “road to Damascus” job – just HOPE. The journey will be long, possibly very long but the first steps will be the hardest. Once you get into a habit of real HOPE then things will get easier. As you awake every morning just think of one thing that you have for which you feel grateful. As you journey through your day, bear in mind that you are the captain of your ship and try to steer it clear of those doubts which come to plague you. As you fall asleep, remind yourself, again, of one thing that has been fairly good in that day. These tips are not easy, I know, in fact they are difficult in the extreme, but they are well worth trying. We all need to remember that negative thoughts hinder our minds and bodies and that overthinking only adds to the hinderance.
     There is a place for offloading these deep fears of hopelessness – that is when meeting with others in similar boats to your own, fortnightly, at our zoom meetings! See you there!

     Reply

9. David Healy says

   February 28, 2023 at 9:17 am

   Mary these are encouraging words but I think Lisa is describing something different – something called various different names like neuro-emotions or drug induced dysphoria. This is not something we can overcome with positive thinking.

   Lisa’s account of AA is compelling – very like AnneMarie’s. We need to make contact with AA – get inside it and see if they can help us to distinguish between an alcoholic’s excuses for drinking and the thinking Lisa and AnneMarie had about the root cause of their problems which folk in AA often call alcoholic thinking but isn’t.

   Can Lisa, AnneMarie or anyone who has contact with AA help point us, perhaps me to begin with, to someone high enough up in AA to draw this to their attention and see what responses we get?

   David

   Reply

   • mary H says

     February 28, 2023 at 11:04 am

     One comment that I have heard about AA is that they seem able to hang on to their individuals for years, meaning that the success of one is there as an example for others. In our prescribed medication withdrawal group, what we find is that, once a person starts feeling a good deal better, they do not attend any more. This is a shame – for the exact reason explained above. As a result, we end up with the Lisa-types who are in despair and have very little good news to share with them. Certainly Lisa and others’ problems go way beyond a quick touch of positive thinking as a cure all, however, I do really feel that being able to hang on to those who have got themselves through their worst patches in order to give Lisa and others hope of better days is extremely important. We have seen some in utter desperation who are now coping so much better. One came back to speak to us last week about the ways that he was able to get himself to a far better place mentally. That worked well, simply because he had been with us at his very lowest ebb but now changed in so many ways. It is difficult for us, without a medical background, to know exactly which of those who attend are just stuck in their negative thoughts and who, such as Lisa, need something more. All we can do is listen and make a few suggestions. Unfortunately, it seems that there is very little else out there being offered for these people – it seems to be a case of us making suggestions or professionals writing further prescriptions. The result of that is that we end up hearing the same desperate stories meeting after meeting as, for sure, the last thing they want is an extra prescription!
     If anyone has ideas of ways that we could further support the Lisas of our group, please get in touch. We really do need to be able to move forward in a slightly more positive way. All suggestions welcome at ellen.hennessey@btinternet.com. Thank you.

     Reply