Editorial Note: This is the first of several posts about Post-SSRI Sexual Dysfunction (PSSD) over the next two weeks on RxISK. This post coincides with the restoration of the Wikipedia PSSD Page which was taken down earlier this year. We reposted the page on RxISK and outlined the controversy surrounding its removal. The restored Wikipedia page, within 12 hours of restoration, has a “This is being considered for deletion” notice – so this post from Audrey Bahrick looking at the original case for deletion is very timely.
This is the time for anyone with strong views about PSSD and the related Post-Finasteride and Post-Isotretinoin Syndromes to get involved in tackling what unfortunately appears to be an act of censorship, possibly just by one or two individuals with an axe to grind. One simple thing that can be done is to have the Wikipedia page translated into Chinese, German, French, Spanish etc and posted on the Wiki pages in those languages.
Disclosure: I am the author, Audrey Bahrick, of the Post SSRI Sexual Dysfunction (PSSD) review article, and co-author of one of the PSSD case reports mentioned on the original Wikipedia PSSD page. The quality of these publications and my professional credibility were among the reasons cited by Formerly 98 in his or her initiative to remove the PSSD informational article from Wikipedia.
Wikipedia states that “intentionally sloppy editing is an abuse of Wikipedia”. I am motivated to comment here because Formerly 98 makes numerous errors of fact, makes misleading statements, and offers opinions that warrant alternative perspectives. Whether intentional or inadvertent, the cumulative impact of the numerous misstatements is that of an unreliable editor. I address my comments to Formerly 98, and also want to provide a somewhat belated holding response to the PSSD community. I regret that I was not aware of the effort to take it down as it was happening so that my comments might have the chance to be weighed in the decision making.
Below is Formerly 98’s rationale for proposing a take-down of the PSSD Wikipedia article:
The entire article is based on roughly a dozen case reports of unclear causality, original research extrapolating from animal and in vitro studies, and a single review article The review article is of poor quality. It consists mainly of a recap of the above case reports, a review of internet message board commentary, and some speculative re-interpretations of the results of clinical trials in premature ejaculation. It was written by a student health center counselor with no apparent background in pharmacology, apparently as the sole publication on which he has served as lead author It was published in a non-Pubmed indexed journal that requires evaluation by only a single peer reviewer. http://www.benthamscience.com/open/topsyj/articles/V001/42TOPSYJ.pdf
(See more at: https://rxisk.org/post-ssri-sexual-dysfunction-wikipedia-falls/)
Formerly 98 asserts that the review article is of “poor quality”, apparently basing this assessment on the three claims below, all of which are either misleading or false. My comments follow his.
1) It consists mainly of a recap of the above case reports, a review of internet message board commentary, and some speculative re-interpretations of the results of clinical trials in premature ejaculation.
Yes, the review article consists of what Formerly 98 reports and substantially more. It brings together and critically integrates what was known about PSSD (as of 2008). The available sources of information include case reports, Internet message board themes, incidental findings, animal studies, and the only empirical studies available that systematically assessed sexual functioning before, during, and after exposure to SSRIs. To my knowledge, none of the (at that time nearly 400) other mostly industry sponsored SSRI sexual side effects studies included pre, during, and post medication sexual functioning assessments.
The review includes a critique of methodology of SSRIs sexual side effects studies with focus on the absence of post medication follow up, as well as lack of assessment for distinctive SSRI side effects of genital anesthesia and anhedonic orgasm. These symptoms are not known to be associated with the many conditions for which SSRIs are prescribed, but are often reported as newly emergent by consumers of SSRIs. When these symptoms endure after medication discontinuation, a link to medication and not the condition being treated may be strongly suspected– an original contribution of the review.
There is nothing “speculative” about the inclusion in the review article of findings from two large, placebo controlled empirical studies that found post medication persistence of an SSRI sexual side effect for significant numbers of participants (a third such study was since published). That the participants were healthy men treated for premature ejaculation with SSRIs is far from irrelevant: rather the findings bolster the evidence for PSSD, as medication-associated sexual changes and their persistence in this population were not related to depression or any other psychological conditions to which PSSD is often ascribed.
Although the studies were intended to test a potential sexual benefit of SSRIs rather than a harm (no studies that I am aware of have attempted to track undesirable post medication sexual changes), the studies offer evidence of the robust persistence of an SSRI sexual side effect. Unless it is demonstrated that men who seek treatment for premature ejaculation are impacted differently by SSRIs than those who are treated with SSRIs for approved conditions, or until an alternative learning hypothesis can be supported—a notion not even suggested by the authors of the studies who attributed post medication persistence of ejaculatory delay solely to the SSRI, these studies belong squarely in the PSSD literature.
By critically integrating information that bears on PSSD from disparate sources, the review article does precisely what a review article is intended to do.
It is worth mentioning that the short acting SSRI dapoxetine (Prilogy) is currently marketed in over 50 countries to treat premature ejaculation. FDA approval for Prilogy is still pending in the USA, but according to the Wikipedia article, approval is imminent. https://en.wikipedia.org/wiki/Dapoxetine
Product labels for SSRIs generally indicate a 15%-ish rate of ejaculatory delay, but well controlled studies looking specifically at ejaculatory delay for a variety of SSRIs find rates in excess of 80%. The SSRIs have long been urologists’ first line, off-label treatment for PE. While it is claimed that Prilogy exclusively impacts ejaculatory latency without accompanying undesirable sexual impacts as with the other SSRIs, I am not aware of studies of long term use. With an estimated 30% of men as a potential market for a drug to treat PE, it comes across as disingenuous for Formerly 98 to suggest, as he or she did, that there no longer exists any credible financially-motivated interests in seeking to contain information about the pervasiveness of SSRIs’ sexual side effects.
2) It was written by a student health center counselor with no apparent background in pharmacology, apparently as the sole publication on which he has served as lead author
The description of my position and credentials is diminishing and distorting (i.e. use of the terms “college” as opposed to “university”, and “counselor”–an unregulated term instead of “psychologist”, a title requiring a doctoral degree), and in the case of the review article being my only lead author publication, is false. Since I see that Wikipedia allows credibility and credentials of the author to come into play in decisions to delete or retain articles, I am providing some information about my credentials. A parallel disclosure re: actual identity of Formerly 98 so that one would have the opportunity to verify his/her credentials and freedom from conflicts of interest would be fair.
As a licensed Ph.D. psychologist with a doctoral degree from Ohio State University’s Counseling Psychology program (at the time I attended ranking third in the nation in research productivity (verifiable here: http://www.socialpsychology.org/gcounsel.htm), my credentials to evaluate and produce research are in order.
I have been employed for 25 years as a staff psychologist at a large university counseling service with an accredited and nationally competitive internship training program. We see several thousand university students per year, with a conservative estimate of over a third actively taking or having been exposed to SSRIs. As such, I could not be more ideally positioned to observe the sexual impact of SSRIs on a great number of young, high functioning, physically healthy and sexually motivated individuals.
I hold an adjunct faculty teaching appointment in a counseling psychology program that ranks among the top five in the country (University of Iowa). As a full time clinician and trainer, my position does not afford dedicated time for research. My publications are motivated not by expectations for career advancement, but by concern for public health.
Re: my lack of training in pharmacology, the mechanism of action of SSRIs is unknown, their impact downstream of blocking serotonin reuptake also unknown, and their impact on sexuality vastly underreported by manufacturers. Finding patients’ reports that sexual changes occurring while taking SSRIs have not returned to baseline after stopping SSRIs to be credible and worthy of dissemination does not require formal training in pharmacology. What is helpful is an awareness of the major gaps in post market pharmacovigillence, willingness to “see”, and appreciation of the interaction of systems that allow PSSD to fall through the cracks and to be all but invisible to mainstream medicine.
Formerly 98 asserts that the review article is the only publication for which I have served as lead author. This is untrue, easily verifiable by a web search for my name which prominently turns up the Researchgate site, where I offer access to my publications.
Oddly, Formerly 98 refers to me with a masculine pronoun. I am female.
3) It was published in a non-Pubmed indexed journal that requires evaluation by only a single reviewer http://www.benthamscience.com/open/topsyj/articles/V001/42TOPSYJ.pdf
Formerly 98 is incorrect about the journal requiring only a single peer reviewer. He or she has confused a “single blind” review policy with that of having a single reviewer. As is easily verifiable, the Open Psychology Journal abides by a “single blind” review policy– meaning multiple reviewers know the identity of the writer but the writer does not know the identity of the reviewers, a common peer review practice. The Open Psychology Journal is an open access publication. Because PSSD is an informed consent issue that is challenging for consumers (as well as prescribers) to learn about, I felt strongly that the information should be available free of cost to any person doing an Internet search, and not available only to those who are fortunate enough to be able to freely access pubmed articles via their memberships in academic and medical communities and those institutions’ subscriptions to costly medical journals. Publishing in a newly established journal (in the first volume) was a trade of ease of access vs prestige had I chosen to attempt a submission to a WP:MEDRS compliant journal. I encourage readers to judge the quality of the review for themselves, and if motivated, to investigate for themselves the accuracy of any assertions made in the article.
Thus first and foremost, we have an entire article that lacks even a single WP:MEDRS compliant citation. I have searched for and not found better references, including a PubMed search for “SSRI sexual persistent”, “SSRI sexual post-treatment”, “fluoxetine sexual persistent”, “fluoxetine sexual post-treatment”, “antidepressant sexual persistent” and “antidepressant sexual post-treatment”.
Are Psychotherapy and Psychosomatics and the Journal of Sexual Medicine not WP:MEDRS compliant?
Second, given the very limited number of case reports (many of which come from a single academic group) from among literally hundreds of millions who have used these drugs, and the complex interplay of physiological, psychological, and environmental factors in human sexual motivation, it seems to me that the evidence for the existence of this syndrome is marginal at best.
Formerly 98 refers to a single academic group (which elsewhere he or she identifies as the University of Iowa). There is no academic group that has produced PSSD case reports: to the contrary, a strength of the case reports is that authors of PSSD case reports come from multiple disciplines and widely varied institutional affiliations. The case reports have sprung up independently of each other with the exception that author Csoka, has contributed to two case reports articles. He is not now and never has been affiliated with the University of Iowa.
Author information for the PSSD case reports at the time of publication were as follows:
- R. Kauffman, MD, associate professor, interim chairman, and director of Reproductive Medicine and Infertility, Department of Obstetrics and Gynecology at Texas Tech University School of Medicine at Amarillo.
- Bolton, Sareen, and Reiss, MDs, Department of Psychiatry, University of Manitoba, Winnipeg, Manitoba, Canada.
- A.B. Csoka, Ph.D., molecular biologist , Department of Cell Biology and Physiology, University of Pittsburgh School of Medicine, Pittsburgh, PA.
- S Shipko, MD psychiatrist , private practice, Pasadena, Ca.
- Ollie Pekka Mehtonen, MD, psychiatrist, Psychiatric Hospital setting, Helsinki, Finland
- A. Bahrick, Ph.D, psychologist, University of Iowa, University Counseling Service, Iowa City, Iowa.
- D.E. Adson and M. Kotlyar, MDs, Dept of Psychiatry, School of Medicine, University of Minnesota, Minneapolis, MN
As I am sure Formerly 98 is aware, once drugs are on the market, serious post-market drug risks are generally first recognized by an accumulation of case reports.
Third, even if real, it seems undue weight to have an entire article dedicated to a side effect reported in a dozen individuals among hundreds of millions who have taken these drugs. The existence of a separate article on this subject (that is hyperlinked to the fluoxetine and SSRI articles) incorrectly leaves readers with the impression that it is both real and commonplace. Formerly 98 (talk) 19:30, 19 January 2014 (UTC)
The first paragraph of the Wikipedia article explicitly stated that PSSD is “apparently uncommon”, thus, an attentive reader would come away with the impression that PSSD is “apparently uncommon”. I would argue that, even if uncommon, because PSSD so severely impacts quality of life and possibilities for intimacy, the condition should be considered a potentially life long sexual disability rather than a dysfunction, and available information should be readily available for consumers and prescribers. It was noted elsewhere by Formerly 98, that if severity warranted, even a rare condition would merit a separate Wikipedia article.
Formerly 98 asserts that the Wikipedia article “incorrectly” leaves readers with the impression that the condition is “real”—hardly reflecting the commitment to the neutral editing position espoused.
The Prozac product literature added a statement to the effect that “sexual side effects occasionally persist after medication discontinuation”. When I contacted the Eli Lilly Health Provider Line in 2012 to learn what prompted them to add this (and was bumped up several levels, then ultimately called back the following day by an individual who would identify herself only by first name, and credentials only when pressed as an R.N), I was told that reports of PSSD constitute .01 percent of Eli Lilly’s reports of adverse sexual events. The systemic obstacles to reaching a clear appreciation for PSSD’s actual prevalence are numerous and formidable, and is unknowable until a major epidemiological study is funded and carried out by parties whose guiding interest is in public health.
jon wilcox says
All drugs have side effects and adverse effects. Serious adverse effects usually lead to a product withdrawal. If a medicine manages to get through to its loss of patent then it is probably likely in most cases that be relatively safe for sensible and hopefully appropriate utilisation. Side effects with finasteride are hardly to be unexpected when its mode of action is appreciated. It can avoid unnecessary prostate surgery. Such decisions are made and should continue to be made with appriate clinical oversight.
Brett says
Jon: As the author states, PSSD (and the analogous PFSD) should be considered a life-long disability that severely negatively impacts a person’s capacity for intimacy and therefore quality of life. It can and often does lead directly to suicidal thinking and in some cases a carrying out of the act, a tragedy. I think this would place the condition firmly in the category of a serious adverse event. Even if the incidence is rare, the population of SSRI/finasteride users is so vast that a large sub-population is affected, so it is only a matter of time until this becomes a systemic problem. The argument that side effects should be expected, and thus the risks are known, is extremely weak. If the risk of a severe and permanent side effect were truly appreciated, health professionals would not prescribe the drug, or at the least a well informed consumer would not venture to take that risk.
Tony says
Sadly Wikipedia has become a vehicle for the ‘official’ viewpoint, which is often far from the truth. In this case, the storyline is that SSRI’s are virtually free of side effects, and anyone trying to suggest otherwise will be rapidly censored.
Paul says
Please consider the dutch article published by the dutch health authorities on pssd. It has been published in a creditted journal.
Dr. David Healy says
Can you send the reference please – DH
Paul says
http://www.lareb.nl/LarebCorporateWebsite/media/publicaties/KWB_2012_3_SSRI.pdf%5Dhttp://www.lareb.nl/LarebCorporateWebsite/media/publicaties/KWB_2012_3_SSRI.pdf%5B/url%5D
Hope this works.
Paul says
Hope this links works.
http://www.lareb.nl/LarebCorporateWebsite/media/publicaties/KWB_2012_3_SSRI.pdf
They made an article for a dutch psychiatrist magazine, which was published spring 2014.
L says
I have translated the English page in Italian and I put it on wikipedia.
Hoping that they do not take away it.
Dr. David Healy says
Wonderful – many thanks for doing this
David
f98 says
Ah, I’m a topic of discussion again. Why not send me an email and invite me to participate? Wasn’t it on your own blog that you stated
“Science moves ahead, when people with different biases have their views challenged by the data. This is the very definition of science as opposed to philosophy or the humanities or business.”?
So to respond to Dr. Bahrick, to whom I meant no disrespect:
1) “The available sources of information include case reports, Internet message board themes, incidental findings, animal studies, and the only empirical studies available that systematically assessed sexual functioning before, during, and after exposure to SSRIs.”
Please take a look at the “Reliable sources for medical information” page over at Wikipedia. Irrespective of whether one is making claims of efficacy or adverse effects, Wikipedia does not permit internet message boards, incidental finding, or animal studies to be used to make medical claims. The reasons for this are obvious if you think about it. The clinical studies can be used, but only if they have been cited in an independent review. This is to provide a minimum level of assurance that the findings are mainstream.
2) The successful treatment of premature ejaculation with an SSRI in an RCT is far, far from compelling evidence of long term genital anesthesia, anorgasmia, and erectile dysfunction. I can’t agree with you on this point at all.
3) “With an estimated 30% of men as a potential market for a drug to treat PE, it comes across as disingenuous for Formerly 98 to suggest, as he or she did, that there no longer exists any credible financially-motivated interests in seeking to contain information about the pervasiveness of SSRIs’ sexual side effects.”
It makes perfect sense if the drugs involved are all generic and sell for pennies a pill, irrespective of how they are used.
4) “The description of my position and credentials is diminishing and distorting (i.e. use of the terms “college” as opposed to “university”, and “counselor”–an unregulated term instead of “psychologist”, a title requiring a doctoral degree), and in the case of the review article being my only lead author publication, is false. ”
I apologize if I mis-stated your credentials. Not working in your field, I was unaware of the status difference between “psychologist” and “counselor”. In chemistry, we are all just “chemists” irrespective of degree. I did not find any other articles in Pubmed, which is the only source I normally use. And I went to a “college” for my B.A. so that was certainly not meant as a slur. Frankly, the college I went to was more selective than almost any University in the country.
5) “Are Psychotherapy and Psychosomatics and the Journal of Sexual Medicine not WP:MEDRS compliant?”
It would depend on the content of the article. Primary research citations are not normally acceptable.
6) “As I am sure Formerly 98 is aware, once drugs are on the market, serious post-market drug risks are generally first recognized by an accumulation of case reports.”
Yes, but there are usually more than 20 or so after the drug has been taken by hundreds of millions of people over 25 years, and they are often objectively observable and not readily assigned to other causes.
So I apologize if you feel disrespected. I believe you are motivated by the best of intentions, and in all probability, an excellent psychologist. But we profoundly disagree on the nature of medical evidence.
Respectfully,
F98.
David Ross says
Just seeing this correspondence now. I note the following:
1. Formerly98 failed to respond to the request that he or she identify him or herself.
2. On 21 January 15, Formerly98 deleted substantial sections of the Wikipedia article on Syngenta reporting a New Yorker article on Syngenta’s efforts to discredit research on effects of atrazine on endocrine function. Formerly98 describes himself (or herself) as a “chemist,” but does not describe any training or experience in physiology. His (or her) stated reason for the deletion was violation of neutral point-of-view rules for Wikipedia; however, the sections in question cited a well-researched article from a national publication that is renowned for its fact-checking practices and clearly meets Wikipedia’s definition of a reliable source.
3. Formerly 98 has used the same approach for “editing” multiple Wikipedia articles: deletion of material based on claims that the source used is biased or not “reliable.” This approach is invariably applied to material that is implicitly or explicitly critical of industrial manufacturers; I have not yet seen an article in which Formerly 98 has added material implicitly/explicitly critical of such manufacturers, or deleted material that is inappropriately positive.
4. Although Formerly 98 cites Wikipedia policies as the basis for the edits that he (or she) makes, he (or she) is highly selective about which policies he (or she) follows. Wikipedia’s guidance on handling NPOV disputes explicitly states that deletion is “not” the first resort (http://en.wikipedia.org/wiki/Wikipedia:Neutral_point_of_view/FAQ#Lack_of_neutrality_as_an_excuse_to_delete). Formerly 98 does not seem to follow this at all.
5. Finally, given 1-4, it is possible that Formerly 98 is not a single individual, but a convenient handle for more than 1 person (cf. Samantha West – http://newsfeed.time.com/2013/12/17/robot-telemarketer-samantha-west/).
5. Items 1-3
Sally Macgregor says
[Hi David (Healy) – a slightly pissed off comment, so you might not want to post it…but I actually find the F98 thing quite spooky]
I support all the points you make, David Ross. And post this comment in frustration.
I have always used Wikipedia as a quick source of information – bearing in mind inevitable inaccuracies that must result from multiple editors and writers. Every time I want to check something about a drug, or a drug company – it doesn’t sound quite right. Then I look at the talk page – and find some berk called Formerly98 lurking there. This evening I just wanted to get a date for when olanzapine was launched in the US – just a date. There is no history of the development of this drug on the Wikipedia page and the information given is generally pretty thin. No mention of its widespread use as a ‘mood stabiliser’ in severe depression, for instance. And F98’s little fingers have been active again, just a week or so ago.
Does anyone out there know who Formerly98 is in real life? I would dearly love to know. He doesn’t sound quite sane on the talk pages to me, which is slightly worrying. Maybe because he is actually a number of people….
And I now spread the word: never trust anything on Wikipedia about the pharmaceutical industry.
Dr. David Healy says
Sally
Formerly 98 is John Alan Tucker. He lives in San Diego. He used to work for a number of pharmaceutical companies. He has his own consultancy now.
He goes around the place editing the Wikipedia pages on drugs such as Levaquin, Cipro and the Fluoroquinolones and eliminating pages such as the PSSD page in addition to editing the page on David Healy to credit James Coyne’s view of Healy and just a few days ago to suggest that where Healy witters on about ghost-writing in fact ghost-writing is not all that common.
He has the idea that anyone who has been harmed by drugs is dangerous and he wouldn’t want you to know his identity as you might come and attack him and his family.
As a shrink this suggests to me a man who is pretty angry about something.
David
J says
Did he ever stop to think that had we not been harmed by the creations of those like him that we wouldn’t be dangerous in the first place? I’m beginning to think that the more knowledge biochemists obtain about genetics the more likely they will use it to create drugs that create more problems than they solve. Oh wait, this is already happening.
jorbie says
This article was again deleted on Wikipedia….what is their criteria for inclusion?
Greg says
I just created a new page.