Editorial Note: This is the debate among Wikipedia referees about whether the PSSD post should be retained. The lead person in having it removed goes under the nom de plume of ‘Formerly 98’. It is the third post in a Post Drug Sexual Dysfunction (PDSD) series that started with Sexual Death and went on to Wikipedia Stumbles.
I’m a scientist by training. My main interests are in pharmacology. My username reflects the IP address under which I used to edit.
I enjoy a vigorous intellectual debate, and often learn much from these. If I disagree with you, its almost never personal. I may even secretly agree with you, but feel that the article in question is unbalanced and needs to be adjusted to a more neutral POV. I feel strongly that the purpose of an encyclopedia is not to persuade, but to inform. I prefer to hold such discussions on the article Talk page so that others can be aware of the discussion and participate.
I fully support and adhere to Wikipedia’s conflict of interest policy. I abstain from editing articles in which I might reasonably be perceived by others to have a conflict of interest or objectivity issue if they knew my personal details. This includes both situations in which I have a financial interest and those in which I might have emotional bias, such as articles covering former employers. I hold a Ph.D. in chemistry, and have worked as a medicinal chemist at several biotechnology and pharmaceutical companies. The most recent of these positions ended nearly 10 years ago, and all of these companies are now defunct. Always happy to discuss stuff and definitely have no interest in edit wars, so let’s talk!
Editorial note: Formerly 98’s main contributions to Wikipedia to date have involved toning down the adverse event profile for Ciprofloxacin and Levofloxacin. RxISK has posted about the extraordinary range of harms these antibiotics can cause – See The Myth of the Magic Bullet.
Do we expect Wikipedia posts to be more conservative than the label produced by the pharmaceutical company?
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”.
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.
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)
Delete/Merge to SSRI— delayed or absent orgasm, decreased libido… these are definitely side-effects of SSRI during therapy, not sure about persistent effects. If the article referencing is poor then we should consider merging any salvageable content (i.e. based on MEDRS source) to SSRI. Lesion (talk) 00:39, 20 January 2014 (UTC)
Delete/Merge per above. –LT910001 (talk) 02:48, 20 January 2014 (UTC)
Delete article, merge anything salvegeable into SSRI and redirect to the relevant subsection. JFW | T@lk 20:33, 20 January 2014 (UTC)
Note: This debate has been included in the list of Medicine-related deletion discussions. • Gene93k (talk) 00:33, 21 January 2014 (UTC)
Note: This debate has been included in the list of Sexuality and gender-related deletion discussions. • Gene93k (talk) 00:33, 21 January 2014 (UTC)
Delete/Merge to SSRI yes, well-recognised side effects, but should be sufficiently discussed in side effects section of main SSRI article. Cas Liber (talk · contribs) 01:46, 21 January 2014 (UTC)
Delete/Merge per above. Given the lack of WP:MEDRS-compliant sourcing, an article on possible side-effects seems unjustified. AndyTheGrump (talk) 20:19, 22 January 2014 (UTC)
Keep Although the number of reported cases is (currently) small, I disagree that the sources don’t meet WP:MEDRS. The subject is a legitimate split from SSRI discontinuation syndrome. Miniapolis 21:01, 23 January 2014 (UTC)
Can you offer some examples of what you feel are the highest quality sources referenced in the article? Its difficult to respond to a broad statement like “I disagree that the sources don’t meet WP:MEDRS”. The vast majority are primary references, case reports, or references to in vitro and animal studies. Which do you feel are strong enough to support a conclusion that this syndrome is widely accepted as a real clinical entity within the medical community, and that it is either severe enough or common enough to merit its own article rather than being swept into the main SSRI article?
Getting specific will allow us to better identify points of agreement and disagreement. Thanks Formerly 98 (talk) 07:42, 24 January 2014 (UTC)
Thanks for your declaration that you have no conflict of interest with this subject, since you had previously done considerable anonymous editing and many IPs do so for professional reasons. WP:MEDRS is an ideal, and this article has a number of references to peer-reviewed journals including Journal of Sex Research, Journal of Clinical Psychopharmacology and Journal of Sexual Medicine; the fact that most studies to date have been on rats is (IMO) irrelevant to the subject’s notability. I’m curious as to why you chose to nominate this article, in particular, for deletion. All the best, Miniapolis 15:11, 24 January 2014 (UTC)
Thanks for your response.
I picked this article to submit for deletion for the reasons I mentioned in the initial nomination: It lacks references that would support the conclusion that the existence of this syndrome is an accepted part of mainstream medical thought, and there are only about a dozen published case reports from among the >100 million people who have taken these drugs over the last 20-30 years. As such, it seems questionable to me whether it is undue wt to include a discussion of this proposed syndrome in the SSRI article, let alone give it its own freestanding article. To quote the relevant parts of MEDRS:
“Whenever writing about medical claims not supported by mainstream research, it is vital that third-party, independent sources be used. Sources written and reviewed by the advocates of such marginal ideas can be used to describe personal opinions, but extreme care should be taken when using such sources lest the more controversial aspects of their opinions be taken at face value or, worse, asserted as fact. If the independent sources discussing a medical subject are of low quality, then it is likely that the subject itself is not notable enough to have its own article or relevant enough to be mentioned in other articles.” – All but 3 or 4 individual patient case reports describing this phenomenon and the only review of clinical data supporting its existence have come from a single group of collaborators at the University of Iowa (Csoka AB, Bahrick AS)
“Case reports, whether in the popular press or a peer reviewed medical journal, are a form of anecdote and generally fall below the minimum requirements of reliable medical sources.”
“Other indications that a journal article may not reliable is its publication in a journal that is not indexed in the bibliographic database MEDLINE”
I would agree with your assertion that MEDRS is an ideal and not a bright line. But the sources quoted in this article all seem to me to be well out of the grey zone, with the overwhelming majority falling within classes that the MEDRS guideline specifically calls out as unreliable. However, its quite possible that I missed something. Let’s focus on the sources cited by the article that you feel best meet MEDRS guidelines. That would seem to be the most succinct way to address this issue. Formerly 98 (talk) 16:58, 24 January 2014 (UTC)
“I have no COIs to report” is not quite the same as “I have no COI”. While I’m trying my best to AGF, I can’t help wondering if you may have a connection to an SSRI manufacturer (BTW, I found a link to this article—and its AfD discussion—while reading its parent article and have no dog in this fight). I’m going to let this discussion run its course. All the best, Miniapolis 21:12, 24 January 2014 (UTC)
I appreciate your concerns and your efforts to be civil in spite of them. Would it be helpful if I pointed out that virtually all of the SSRIs are now off-patent, manufactured as commodity products by generics companies, and sold for pennies a pill? In 2012, the only commerically important antidepressants from Pharma’s point of view were lexapro and cymbalta, both of which lost patent protection in December 2012. http://beta.fool.com/ereports/2013/07/18/the-us-antidepressant-market-old-fashion-branding/38408/
Under the circumstances, I’m not quite sure how anyone would have a financial COI with respect to SSRIs. It would be like having a COI with respect to aspirin, penicillin, or for that matter, cement. Best Formerly 98 (talk) 23:27, 24 January 2014 (UTC)
Pardon me for butting in on this, however I would really appreciate it if this article could just be improved in some way to address concerns, rather than being deleted. One of the main objections to this article seems to be lack of case studies, and lack of people officially listed as having the condition. Did you ever consider that this attitude is nearly universal? Sexual sides are greatly under reported too. I remember seeing a study about that.
Everything has to start somewhere, and without even having an entry on this website, psychiatrists will feel confident in their denialism. If we are truly being scientifically skeptical (let alone philosophically), we must acknowledge that this MAY exist, rather than dismiss it out of hand. This is a falsifiable claim, so I think dismissal on the grounds that we don’t know enough isn’t valid.
I can tell you I have talked to more than 200 people who claim to have PSSD, and that is just the people who chose to sign up on my forum. Of those people, I am nearly certain that at least half have it, but more likely 2/3. The rest I think just have depression and/or anxiety. There are hundreds more on a yahoo group. Speaking just for myself, I can tell you that bupropion 300mg per day relieves my mild depression, and does little for PSSD. I can however get an hour of 90 to 100% relief with 60mg of buspirpone on an empty stomach, albeit at the cost of severe lightheadedness. It works EVERY time.
What I want however, is research that leads to a drug acting on the 5HT1A receptor with less sides and better bio-availability. It would be much like cialis is for a man with ED. DIY medical research has serious limitations, but it’s all there will ever be if we continue having to fight denialism.
Let me go with this approach too. Is it controversial to state that an SSRI desensitizes the 5HT1A receptor? Would it therefore be physiologically impossible for it to remain so (I’m pretty sure this was even proven in rats)? Isn’t it well known that this ultimately inhibits dopamine release, and that dopamine has a lot to do with experiencing sexuality?
Would it therefore be unreasonable to request this article not be deleted, but instead simply add language stating the concerns of there being very little documented evidence such as case studies, and most existing evidence is self-reported by people whose claims are routinely dismissed out of hand? Or whatever similar language you deem proper. Thank you for hearing me out. — Preceding unsigned comment added by 184.108.40.206 (talk) 05:03, 27 January 2014 (UTC)
Hi 76, how would you feel about merging this into a section in the parent SSRI article? Realizing this issue is close to your heart, and setting aside my own skepticism for a moment, I think we probably agree that the number of people who believe they are affected by this is a very small fraction of the hundred million or so people who have taken SSRIs. I’m open to acknowledging that it is possible that this is a real effect of SSRIs but usually stuff doesn’t go into Wikipedia until its established as mainstream medical thought. Also, if we create a separate article for each side effect of every drug, no matter how rare that side effect is, things are going to get crowded around here. Formerly 98 (talk) 05:56, 27 January 2014 (UTC)
Separate is probably better, but merging could be alright if it is given enough space and subsections. At the risk of being pedantic, I would say there is no reason to set aside skepticism, but merely to give consideration to a yet undetermined possibility which you consider to be less likely. I do understand there are reasons to think it’s all nonsense. I would agree it is a small fraction. I’m virtually certain it’s less than .1%, but more than .01%. While this is far from reaching the critical mass for a paradigm shift, it’s not totally fringe or physiologically impossible. Although I admit most PSSD people believe in the most obviously ridiculous things and tend towards a Luddite-like attitude in regard to medical science, and are notorious for belief in the naturalistic fallacy.
If this was a single side effect, I certainly wouldn’t consider it worthy of more than a casual mention. However, it is the persistence of several side effects. Usually in PSSD, a few side effects persist after discontinuing, frequently to a lesser degree. I have heard of people who have the same severity, but usually it just gets partially better rather than returning to how it was prior to use. I would be inclined to disbelieve people who had no side effects while on it, but then got them when coming off (excluding the separate discontinuation syndrome).
I think acknowledging that it is currently outside the mainstream, while at the same time acknowledging its existence, what we know about it, and leading hypotheses, as well as links to related topics which are mainstream such as the neurology on which the hypotheses are based, would be the right idea. My only concern on merging would be the bias that might exist in the mind of a person passionate enough about SSRIs to maintain its article, although admittedly the criticism section is fair. The final issue is that discontinuation has its own article, but those issues go away in time, and not all SSRIs cause that. Or perhaps knowledge of the subject is the sole criteria. — Preceding unsigned comment added by 220.127.116.11 (talk) 16:51, 27 January 2014 (UTC)
Well, thanks, given your strong interest in this subject your note is remarkable for its restraint and willingness to see the other side of the issue. There are a lot of rules here about the level of evidence required to support medical claims, but I’d be the first to say that the stringency with which they are enforced is inconsistent.
I’m pretty conservative about these issues of evidence and mainstream acceptance myself, and don’t see Wikipedia as a tool for enlightening the medical community about non-mainstream theories. That being said, I would not be adamantly opposed to taking the article as it stands, removing most of the references to in vitro and animal data, and merging it with the SSRI article. I’d also be open to the idea of creating a “Sexual side effects of SSRIs” article and having this material incorporated there as no more that 25% of the total text. But I don’t want to be the one who writes it.
I proposed this article for deletion, but do not have final decision making power over what happens next, the admins decide that. Right now it looks like there is a consensus for “merge the better parts of this article into the SSRI article”. I’m fine with that.
To be honest, if your goal is to increase the credibility of this as a real syndrome, I don’t think a Wikipedia article is an effective tool. You have an interesting asset in the form of your Yahoo user group that I would think could be used for some interesting research, especially if you could get someone who studies human sexuality involved who is not one of the current proponents of the concept. I’d be happy to share a few thoughts on this if you want to email me through my user page. Formerly 98 (talk) 17:16, 27 January 2014 (UTC)
As a clinician who prescribes SSRIs liberally and successfully for depression and occasionally specifically for premature ejaculation I find this debate fascinating – and I have an absolute admiration for voluntary moderators and contributors to wikipedia such as #98. Wikipedia is a profound tool which must be kept in check. IMHO
Post-SSRI Sexual Dysfunction, or whatever one wants to call it, is as real as gravity. It’s plain stupidity to argue otherwise. It’s time to get the information for the masses. Too many lives have been lost to this sexual adverse reaction.
I’d like to thank the editors of RiskRx for presenting the debate above in its entireity, and for posting the single positive comment above regarding these edits.
The only objection that I would like to make is that I consider the comments regarding my edits to the fluoroquinolone article inaccurate and excessively partisan.
1) My edits to the article do not simply consist of “toning down adverse events”. At the time I began editing, the article was some 4000 words long, of which only 3 sentences described what the drug was used for. Looking at the articles, which described the drugs pretty much as if they were chemical warfare agents, one was left clueless as to why they are prescribed several tens of millions of times each year. Nor was there any hint that after 20 years on the market, ciprofloxin remains one of the most effective drugs for treating life-threatening Psuedomonas infections, which are intrinsically resistant to most every other antibiotic. This imbalance was corrected both by adding efficacy data and reducing discussion of rare adverse events of unestablished causation to a summary statement.
2) The article at the time I began editing it was far from a balanced discussion by a financially disinterested party. The majority of the article was written by the President of the Fluoroquinolone Toxicity Research Foundation, a group that self-described as existing to “support those seeking financial compensation for fluoroquinolone associated injuries”. It is likely that the editor himself was engaged in litigation against the manufacturers, though I have not been able to establish this.
Imagine the outrage here at RiskRx were it determined that the Prozac article had been written by Eli Lilly sales reps. The situation here was no different. There was a huge financial COI that would never be acceptable to RiskRx (or to Wikipedia) if it had been on the other side of the issue. Or are financial COIs only important to RiskRx if they come from the drug industry?
3) Comprehensively listing out every adverse event seen in even a single patient and attributed to drug treatment may well be RiskRx’s mission, but it is not Wikipedia’s. Our goal is to SUMMARIZE data about an event, person, or substance. In such an article, we do not individually list adverse events for which there are only a handful of case reports, as while deeply affecting the individuals involved, the incidence is less than one in a hundred thousand. Likewise, we do not report efficacy outcomes that are substantiated only by case reports and small clinical trials. We apply the same standards of evidence and materiality to both positive and negative drug attributes.
The mission of Wikipedia is to provide a free encyclopedia that reports on but does not take sides in controversies, and which gives space to minority viewpoints in proportion to their prevalence among experts in the field. We do not attempt to “educate” experts, nor do we engage in advocacy. Every advocacy group in the world tries to use Wikipedia as a podium for propagating their point of view. That is not our purpose.
Dear Pharmaly, er, Formerly,
Considering the value you place on evidence, it is hard to see why you would say this:
“It is likely that the editor himself was engaged in litigation against the manufacturers, though I have not been able to establish this.”
and then this:
“There was a huge financial COI [Ed.: for that editor] that would never be acceptable to RiskRx.”
Which financial COI is that?
Regarding PSSD, I have no skin in the game. I read of the suffering, and lack of desire to live, that people report after realizing their disability is permanent. Men who cannot have sex again, and women who can’t have sex or can’t enjoy it are grieving day after day. Some of them checked wikipedia, foolishly, for information before starting on SSRIs. Reassured by the absence of correct information during certain time periods, for which you are responsible, they felt it safe to proceed.
It’s a good thing they don’t know why the site was wrong, isn’t it?
Too bad PSSD isn’t permanent, or you might be on to something there.
I know PSSD is real. My friends who have taken SSRI’s know it is real. It is a very prevalent side effect and covered up due to the financial implications. Saying otherwise is insulting and very suspicious.
Before I took any SSRI’s I read the article on SSRI’s on Wikipedia. The article says “Sexual dysfunction occasionally persists after discontinuing SSRIs.” Had there been an article dedicated to PSSD it’s quite possible I never would have taken these drugs.
The suggestion that it is only a minority that experience this side effect should be viewed in the light of the many published papers and perhaps even the yahoo support group that numbers a massive following.
I am very suspicious of the individual who wishes to take this page down. It may not be perfect but it maybe the first point of contact for fellow sufferers.
Any link to SSRI manufacturers in any way?
If it is a more widespread issue, I wonder how many people would refuse it in the first place!
The individual who took the page down, John Tucker, has many conflicting interests