“Why is the best information around on a peer support network?”
Online forums have emerged to help people who are navigating withdrawal alone
Online peer support forums offer people taking psychiatric medication valuable information and advice about withdrawal. Such online communities help us understand withdrawal as an integral part of mental health treatment and recovery. This article argues that it is necessary to validate this new resource so that this content is accessible not only to patients, but also to prescribers.
Many patients who choose to discontinue psychiatric medication end up pursuing withdrawal without their prescriber’s guidance. Some patients start the withdrawal process with their clinician, but, when these attempts are unsuccessful, they end up pursuing withdrawal without professional help. Others try to withdraw without ever seeking their prescribers’ assistance in the first place. Some people are eventually able to get off their medication, although often with difficulty. Others are not able to do so.
In the course of withdrawal attempts, patients gain practical knowledge. As Peter C. Groot & Jim Van Os wrote recently, patients looking to withdraw from psychiatric medications take a “pragmatic course.” Their “practical experimentation,” provides others with “a rich knowledge base outside mainstream psychiatry,” including “many concrete suggestions for new and practical medication withdrawal strategies.”
During their withdrawal journeys, many patients turn to online, peer-supported forums for information. These online resources fill a knowledge gap in the field of psychiatry. As the founder of the site SurvivingAntidepressants.org, Adele Framer (aka Altostrata) explains:
The only reason that I’m an expert is because it’s like the dark ages out there in the field, as far as tapering and withdrawal is concerned. I would like to say, very humbly, the only reason that I’m an expert is because there’s virtually no competition—and doctors really should be doing this.
In addition to being a source of information, people also use these community forums for support, communicating with others who have undergone similar experiences. As consumer/survivor leader Oryx Cohen told me, the best online sites “are the ones that provide some peer support from those who have withdrawn from similar drugs AND allow for the individual to discover the process that works for them.”
Online withdrawal forums are vibrant and well-established
Virtual communities have emerged as one arm of the larger psychiatric patient rights movement. That effort, led by individuals and organizations around the world, is challenging traditional medical psychiatry. Many involved would describe themselves as survivors of interventions by psychiatry or ex-patients of mental health services. Like the movement itself, online communities have arisen organically. They establish their own rules and structures and operate as independent entities.
Online peer support forums addressing psychiatric medication withdrawal are usually staffed by former patients rather than by professional psychiatrists or other prescribers. As Luke Montagu, co-founder of the London-based Council for Evidence-Based Psychiatry, told the New York Times: “You’ve got this huge parallel community that’s emerged, largely online, in which people are supporting each other though withdrawal and developing best practices largely without the help of doctors.”
While positioned outside the psychiatric establishment, these communities do not eschew medical sources. As Framer notes, the sites’ information about how to withdraw safely “is pulled from scientific papers, governmental advisories, and package inserts.”
Notwithstanding, online forums typically distinguish their service from that of professional clinicians. The sites describe resources as supplementary and encourage visitors to work with their prescribers as well. As The International Withdrawal Project forum advises:
Suggestions, opinions and advice provided by anyone on this site should not be considered as professional services, and are no substitute for professional health care. Please consult your own trusted health professional before making any changes to your medication, or making any other health decisions.
Similarly, the Surviving Antidepressants website cautions: “This site does not provide medical advice. … Information presented here is intended for discussion with your doctor.” Likewise, BenzoBuddies advises that the decision to quit any medicine should be made in consultation with a suitably qualified medical practitioner.
There are a variety of robust online community forums and groups (as well as a plethora of personal video blogs) chronicling individual withdrawal experiences and offering advice. Some have substantial followings. For example, Framer and others founded Surviving Antidepressants in 2011 after participating for years in other antidepressant withdrawal forums. Laura Delano and her then-boyfriend founded Inner Compass Initiative, which hosts The Withdrawal Project, in 2018; years before, she began her own withdrawal odyssey after reading Robert Whitaker’s Anatomy of an Epidemic. BenzoBuddies went online in 2004—prompted, as Colin explains in a 2009 post, by a founder’s experience with other online groups during and after withdrawal from prescribed benzodiazepines.
Today, online communities see considerable traffic. According to Adele Framer, Surviving Antidepressants has approximately 15,000 registered members and more than 500,000 visitors per month. The site contains 6,000 case histories and covers more than 60 topics. Just one topic on that site, entitled “Introductions and Posts,” has over 360,004 entries. The International Antidepressant Withdrawal Project, even though it has closed its interactive forum, has 1,528 threads and 21,036 posts in late October 2020. And, in 2018, the site BenzoBuddies received, on average, 250,000 hits a month. A visit to the Facebook page for another site, Cymbalta Hurts Worse, revealed 26,800 members in February 2021.
It is important to recognize limitations of sites
Online withdrawal forums provide help for many people, including many who are emotionally and physically suffering, but they are not without potential flaws.
The open flow of communication in online forums makes it difficult to ensure the quality of all posted advice. Site administrators do work to address this vulnerability, but the very nature of these forums will inevitably raise questions. Christy Huff, who observes online forums regarding benzodiazepines as both a doctor and a patient, notes the blurry line between online support and medical advice, and the risks of veering to far towards the latter: “[S]ome of the medical advice I see on the forums makes me cringe. Giving advice is technically not allowed, but it happens anyway…. Some advice is good, but some can be life-threatening.” It is in recognition of this type of risk that sites include the sorts of warnings, cited above, reminding visitors to consult with their own medical providers. To the extent that sites can also reach out to psychiatric prescribers to work in partnership, as the Withdrawal Project has done, that collaboration may offer another form of protection.
Some misinformation, however, may be posted on sites intentionally. In a complaint filed in May 2018 in a New Jersey Superior Court, Monmouth County v. Purdue Pharma L.P., the plaintiff alleged that Purdue targeted online communities supporting those suffering from pain and used these community-building efforts to promote the use of opioid drugs for treating these conditions.
Huff further suggests that participating in online communities may be stressful. Huff observes that many people on the benzo sites she joined were suffering profoundly. Some were suicidal and others were experiencing psychological effects of benzo withdrawal, including confusion, anger, aggression and paranoia. Their posts deeply affected Huff. Also affecting were the moments when conversations devolved into arguments, although Huff thought site moderators did a good job of calming such disputes.
Online forums are well-suited to provide withdrawal advice
Despite potential limitations, online forums are well-positioned to address problems arising when patients seek to withdraw from psychiatric medication. These problems include the lack of best practices protocols for withdrawal. The diversity of patients’ bodies and the variations in drug use frustrates that goal. Forums are helpful because they provide room for breadth and diversity of information.
Online forums are well-positioned for another reason as well. There is an argument that the variation in withdrawal experience is not simply a result of biological factors. Will Hall, who has written extensively about withdrawal from psychiatric medication, argues that the variation in withdrawal experience is instead largely due to social factors. For Hall, social factors that favor successful withdrawal include: “the quality of the relationship, the confidence of the provider, and the capacity for patient feedback,” as well as other supports, including peer supports. Patients can find these elements—a quality relationship, a confident provider, the capacity and willingness to hear patient feedback, and other social supports—with the help of an online peer community.
Online forums are also valuable as they document patients’ withdrawal experiences over long periods of time. Because withdrawal effects are generally not revealed in initial drug trials and because many people complete withdrawal without prescriber assistance, the mental health field does not have much data or understanding about drug discontinuance. “[M]any unidentified problems beyond withdrawal syndromes can take years to become fully appreciated—often requiring an accumulation of published case reports or other observational studies before they become widely known to the medical community.” That data has emerged on online sites, as, over time, more and more people share their withdrawal experiences.
Tapering advice is an example of the expertise generated by online forums
Tracking patient experiences over long periods has allowed forums to gather expertise on a central issue in withdrawal: how to best to taper off medication. A number of forums now advocate a slower, more deliberate process than that suggested by many prescribers.
Prescribers frequently advise their patients to taper psychiatric medication over a period of weeks. Psychiatrist Natalie Campo recounted an experience she had during medical school:
On [an] externship, I was working with the physician for one day. …On this particular day, the plan was for a taper of a medication. Since I had never tapered a medication before, I asked how to do it. The psychiatrist was annoyed by this question and responded, “Just cut it in half, and cut it in half again. It’s not rocket science.
Such physicians were likely operating under “a faulty assumption that, if a dose is reduced by half, it will simply reduce the effect in the brain by half.” Apparently, this assumption survives today. The American Psychiatric Association’s practice guidelines for the treatment of patients diagnosed with Major Depressive Disorder still recommend tapering “antidepressants and other drug therapies” over the course of “at least several weeks.”
By contrast, many posting on online communities caution people to taper much more slowly, often over months or even years, with careful attention to the final period during which medication is discontinued completely. One recommendation is to reduce medication dosage by 10% every four weeks, with each calculation based on the previous month’s dose amount. Adele Framer explains the rationale: “What we want people to do is to start off with gradual tapering instead of making those big decreases that their doctors recommend—because that generates withdrawal syndrome.”
In addition to minimizing the physical effects of withdrawal, slow tapering has another benefit. Researchers found that “patients who were withdrawn slowly from their antipsychotics in the long-term had better social outcomes than patients who remained on the medication.”
While abrupt withdrawal is sometimes indicated, and while response may vary with chemical factors (e.g., duration and degree of use) and non-chemical ones, for many drugs, slow tapering is now considered prudent.
Information from online withdrawal forums can improve overall psychiatric care
Online forums provide people interested in withdrawal with critical information and advice; prescribers should access this information to become better caregivers. In doing so, prescribers could gain clearer insight into the difficulties of their patients who are pursuing withdrawal. They could learn how to best respond. In addition, prescribers could consider withdrawal effects when selecting medications. They could share accurate and complete withdrawal information with the patient during the informed consent process.
Further, by exposing the magnitude of withdrawal risks, online forums hopefully will move prescribers to rely less exclusively on medication and to educate themselves about therapeutic alternatives. In this way, the psychiatric field could embrace a more holistic view of mental health care.
As prescribers begin to consider online accounts of medication withdrawal experiences, they may pay more attention to patient voices in other aspects of their practice. Such awareness could promote more cooperative relationships between clinicians and patients. That outcome could benefit patients. As psychiatrist Daniel Fisher advised me, prescribing should be as collaborative and person-driven as possible and the best results require a “good humane connection with your prescriber.”
Legitimizing the information collected in online forums
While there is a plethora of crowd-sourced information regarding withdrawal online, the prescribing community is not routinely accessing it. We should find ways to assist them in using this information. We must think about how to legitimate both the withdrawal experiences and the guidance, support, and information available online.
Psychiatrists have little formal impetus to consider such information. They rarely suffer legal consequences despite being unaware of the information about medication that can be found in online forums.
In cases involving allegations of harm from psychiatric drugs, courts routinely defer to the medical establishment, even when plaintiffs counter with divergent information. For example, the decision of the U.S. District Court for the Eastern District of Wisconsin in Sims v. Keshena et al. (2016) displays this tendency. When Sims, who experienced serious side and withdrawal effects from venlafaxine, brought a claim of deliberate indifference to serious medical needs, the defendant psychiatrist countered with the medication’s “very low rates of life-threatening or lethal outcomes when compared to other psychotropic medications.” Addressing Sims’ factual proof of the drug’s harm, which derived from personal experience and internet webpages and forums, the court compared it unfavorably to the doctor’s opinion:
Sims’ proof, however, consists of his own statements that he suffered side effects from taking venlafaxine, two printouts from webpages describing possible side effects of the medication, and what appear to be posts on an internet forum about individuals and their experiences with venlafaxine. This material is not competent evidence that can reasonably call into question Dr. Keshena’s medical opinion.
While predictable, such deference to clinicians should not discourage efforts for change. The current situation is untenable. Patients cannot wait any longer for traditional psychiatry to deem legitimate the patient-centered information found in community forums. We must advocate for expanded professional awareness of online withdrawal information.
This change requires advocacy. Prescribers must be educated regarding the value of online data, even if the information is personal and idiosyncratic. One argument is that such data is particularly relevant to drug withdrawal which by its nature is specific to the individual. As Oryx Cohen posited:
I would argue that our subjective experiences are even more important and true [than site content that has been reviewed and validated by a doctor]. As much as a doctor would like to, they cannot predict how an individual drug will affect an individual patient, just as much as they cannot predict how one withdrawal method will work for an individual. Yes, there are general patterns with all of these drugs, but the individual variance is so great and so much depends on other factors like belief in the drug or withdrawal process (placebo), faith in the practitioner, social supports around the person, stability of home life, etc., etc., that general predictions become rather useless and the subjective all the more powerful.
Some mental health clinicians are supporting an unconventional approach to treatment. Yale University School of Medicine psychiatrists Swapnil Gupta, Rebecca Miller and John D. Cahill, in their 2019 book Deprescribing in Psychiatry, dare psychiatric prescribers not to wait for absolute proof, but to take immediate steps to balance evidence-based practice with their own judgment and their patients’ wishes:
In a bid to be cautious and adhere purely to empirically supported treatments (e.g., where meta-analysis or consensus guidelines exist), we may miss the evidence sitting in front of us. We should not forget that “evidence-based practice” must include clinical judgment and patient preferences in equal partnership with the evidence-based treatments. … The mandate of the complex conditions within which we treat is that we cannot let the perfect be the enemy of the good, and at times we must act without the luxury of certain evidence.
COVID-19 may expedite this process. In September 2020, mental health clinicians and researchers urged that online support groups be involved in the development of mental health services during the pandemic:
Subjective experience and acceptability of new approaches should guide changes and inform the need to adapt to changing mental health needs. … These [online] groups should be involved in the design of mental health services and in monitoring the quality of these services.
Convincing providers to recognize the information collected online as legitimate evidence of the problems associated with withdrawal will support such patient-driven methods.
Forums offer not only the patient perspective, but also the authority of collective experience. The next task is to capture that information in a way that sways mainstream practitioners. Advocates should pursue several approaches simultaneously: cull online data for research; pursue new research to credential the advice derived from consumer forums as evidence-based practices; press for government support for independent studies; and recognize the specific stigma facing people with mental health issues around the termination from medication.
Use online information as a source of data for research
The information accrued on these online sites—including regarding withdrawal symptoms and experiences with tapering and other methods for discontinuing medication—should be mined as data for clinical research.
Forum founders have recognized the value of this material. As Adele Framer described the data on Surviving Antidepressants in 2011:
This site is also a research project. The personal stories on this site are documentation of an iatrogenic condition—suffering caused by medical treatment—that is almost always ignored, misdiagnosed, or denied by the medical establishment…
With our documentation of antidepressant withdrawal syndrome, we hope to educate the medical establishment about this problem. Case studies are essential; they are evidence understood by doctors, the psychiatric industry, and government regulatory agencies. They have already informed numerous articles in major publications and scientific papers.
Clinicians are taking note. In their 2019 book, Gupta, Miller and Cahill observe: “It is becoming increasingly important to develop a methodology to formally analyze and interpret the large amounts of qualitative data that are available in the form of consumer forms and chat rooms.”
Some researchers have tapped into this data. One 2018 study of “brain zaps,” a feeling, associated with withdrawal, that the brain has received a jolt of electricity, was based upon 595 unsolicited posts to a mental health site. Another 2018 study of antidepressant withdrawal used data from a sample of posts on an antidepressant withdrawal website. Likewise, a 2020 study of withdrawal syndrome after discontinuing antidepressants was conducted using patient narratives from SurvivingAntidepressants.org.
However, ongoing efforts are needed to mainstream this information. The process may be hindered by the difficulty in transforming personal accounts into the type of evidence psychiatry is used to working with: clinical studies. Yet, this transfer is important. Peter Gordon, a Scottish psychiatrist with the National Health Service, suggests that studies do not do a good job of capturing the experience of withdrawal because it is hard to translate the descriptive elements of the process into the quantifiable nature of a study. However, without these stories of withdrawal, the “evidence base can never be complete.”
Develop studies to credential online advice regarding withdrawal as “evidence-based practice”
As researchers seek evidence-based practices regarding withdrawal, activists must press for independent and carefully designed studies. As discussed in my previous article, observers have recently drawn attention to flaws in RCTs of psychiatric drug withdrawal. Peter C. Groot & Jim Van Os suggest that clinical practice must immediately recognize and adjust to the body of knowledge already accumulated, including in online forums and in “pioneering observational studies to date.”
David Cohen and Alexander Recalt, who explore how the biases and design of past RCTs regarding withdrawal result in “withdrawal confounding,” suggest that those undertaking new studies make specific changes in design and reporting. To those ends, they recommend efforts “to involve patient/consumers at all stages of clinical trial design, including the tapering of psychiatric drugs.” Because drug companies might stymie that strategy, they suggest that future clinical trials involve “researchers with contrasting or opposing views (allegiances) about the helpfulness of psychiatric drugs” in their design and execution.
We also should consider if certain withdrawal advice merits endorsement now, even before further study. Researchers promoting peer supports have made this type of suggestion. Responding to an argument that clinical trials had not found peer supports to be more effective than other mental health services, a group of academics and practitioners noted empirical evidence of the services’ effectiveness, even while acknowledging the need for more government research. This group pointed to 30 studies finding positive effects and their own collection of positive examples of the benefits of peer support. They also noted that peer supporters do not offer treatment and thus the standards by which they must be evaluated differ from those of clinical staff. The same sorts of arguments might be made with respect to some withdrawal support services.
Advocate for independent studies of withdrawal
As the debate on the degree to which evidence-based practices should guide psychiatry continues, one thing it is clear: more carefully-designed studies of medication withdrawal are needed.
Much existing research around withdrawal has been sponsored by pharmaceutical companies, which is problematic for a number of reasons. This research frequently minimizes the effects of withdrawal, as Christopher Lane reports with respect to research on antidepressant withdrawal. Other drug company research appears self-serving. In a study sponsored by Eli Lilly and Company, researchers found that when patients’ SSRIs were abruptly replaced with a placebo, they experienced a slew of ill effects sufficient to convince patients and prescribers not to attempt withdrawal.
Additionally, most drug companies’ studies last only several months and focus on medication efficacy. This is purposeful. As New York Times reporters observe: “Drug makers had little incentive to mount costly studies of how best to quit their products, and federal funding has not filled the research gap.” The result is a vacuum of research. As recently as April 2020, a researcher noted the dearth of long-term, methodologically rigorous studies regarding antidepressant withdrawal.
There have been some studies conducted outside the U.S. In 2018, the New York Times reported that researchers in New Zealand completed the first rigorous, long-term trial of withdrawal, in this case from Prozac. In 2019, two British researchers published a systematic review of 14 studies on antidepressant withdrawal, finding 56% of antidepressant users experienced withdrawal symptoms, including 46% whose symptoms were severe. Some patients reported problems 79 weeks after stopping medication.
The first U.S. study of 250 longer-term psychiatric medication users and their experience with discontinuation and relapse, published in 2017, fills only a sliver of the research gap. Further, the study presented only preliminary results. Moreover, the authors note limitations of the research, including reliance on retrospective self-reports and the sample’s homogeneity in race-ethnicity and gender. They explain why more research is crucial:
This study recruited more long-term users than some previous studies, but future research would benefit from better representation of underserved populations. Longitudinal studies would aid treatment planning by better characterizing treatment trajectories, beginning with the experience of medication initiation, and would help identify individuals who could benefit from specific discontinuation strategies.
As the authors of this study suggest, it is essential that researchers examine the withdrawal experience of all sectors of the population. This research should include study of children and adolescents, a group which the authors of a 2020 research review note is nearly completely ignored in the clinical literature.
For all these reasons, advocates should promote public and other independent sources of funding for comprehensive and long-term withdrawal research. This strategy joins the two others approaches mentioned–promoting the study of forum data and helping to validate forum advice and support as best practices–as means to take advantage of the wealth of information amassed online about psychiatric drug withdrawal.
Editor’s Note, March 8, 2021: Site traffic data for SurvivingAntidepressants.org has been updated based on correspondence with Adele Framer.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.