
Raising awareness about post-SSRI sexual dysfunction (PSSD). Tweeting about the sleep-disordered breathing–ME/CFS (& related disorders) connection @nataliezzz3
Joined July 2024
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Follow @PSSDNetwork and @PSSDInstitute to learn more about and stay updated on PSSD. If you’re interested in my UARS and ME/CFS content, follow me @nataliezzz3 (and I somehow accidentally “left” my UARS 🧵 on this account so I won’t receive any notifications related to it, btw)
POST-SSRI SEXUAL DYSFUNCTION (PSSD) is a condition where genital numbness/⬇️ sensation (& other sexual side effects) persist after treatment w/ a serotonin reuptake inhibitor (SSRI/SNRI/etc.) Non-sexual symptoms like emotional blunting, anhedonia, & 🧵 1/n
pmc.ncbi.nlm.nih.gov/article…
Natalie retweeted
Honored to present this study at ICS in Maastricht. PFS, PAS, and PSSD are devastating and reported worldwide. Ongoing sexual dysfunction, anhedonia, brain fog, muscle wasting, genital numbness, depression and suicide after stopping the drug demands research and patient support
Also, what's going on psychologically with a person who blocks you from their professional account (@PsychotropicDC) but continues engaging from their personal account? Could it be what I'm saying is not just "ignorant opinions" but perhaps threatening in some way to her message?
She had blocked me from her @PsychotropicDC account before leaving the “ignorant opinions” comment on my thread as Altostrata ⬇️ C’mon, if you’re going to block someone actually mean it! She clearly likes arguing w/ ppl so that’s not why I was blocked by her from @PsychotropicDC.
@PsychotropicDC I like how you blocked me on my @PSSD_Info account lol. Anyways, it's honestly hard for me to believe that Altostrata herself would claim "No one has ever said CFS & protracted psychotropic withdrawal are the same" -- there are a ton of medical professionals (and some patients) arguing some version of this (they may not always explicitly say PW = CFS, but they argue that the same "functional"/psychosomatic/etc. processes underlie both [& other CFS-adjacent conditions like fibro]). I'm out here actually presenting the evidence (also informed by personal experience with both) to medical professionals on why they are not the same and apparently it's block worthy lol.
Here is a patient arguing (some version of) this on Mad in America. You stated in the comments there: "To propose 'a psychological theory, The Mindbody Syndrome (TMS)…is the ultimate cause of protracted withdrawal' is ahistorical, untethered to facts, and objectionably callous towards those who are incapacitated by the neurobiological effects." Well, a lot of medical professionals (and some patients) are going to continue proposing just that (or some variation of it) as long as people don't recognize the differences between PW and "central sensitization syndromes" like CFS/fibro/etc. because people like this guy who rapidly recovered with a "mind-body" approach and thought they were still suffering from PW (he very well could have been at the outset and then developed a "central sensitization syndrome"--or who knows, maybe even a genuine psychosomatic/"conversion" disorder in his case--I don't want to speculate too much on his individual case) will say that they recovered from PW this way.
So if you don't want to get into gaslighting patients and saying things like "Actually you didn't recover this way, it was probably just a coincidence" (as the ME/CFS community likes to do with the countless patients who have recovered with similar approaches--although the other favorite is "You likely never had *real* ME/CFS to begin with," despite it being a symptom-based diagnosis with no diagnostic test), you may want to attend to the evidence I'm presenting on a theory for "central sensitization syndromes" that actually accounts for mind-body recoveries (and a bunch of other features of the disorders), so you can say to people like this guy something along the lines of "Hey, I believe what you're saying about your personal experience, but you likely didn't have PW at the time you recovered; you may have had X (or Y, Z)." Or not (and just block me on this account too).
Whatever this was, it was def. not a clear-cut PW case: "Back when withdrawal sensations were slowly building, I suffered a back injury. The injury quickly healed, but the pain didn't go away. Chronic pain eventually spread around my entire body and debilitated me to the point where I was partially bedridden for 5 years...withdrawal sensations overlapped with pain sensations; I often couldn't tell which was which. I applied the [Sarno] mind-body approach to pain, and it worked. 5 years of debilitating pain just gone. But...to my surprise, protracted withdrawal sensations also went away at the exact same time."
madinamerica.com/2023/12/a-m…
I love this. From the comments: "After obsessively watching this like...3 times I started to notice...the guy sitting on the floor in a grey shirt with the biggest smile on his face is sooo precious. Dancing makes you and everyone around you happy." 🥰
youtube.com/watch?v=XHRicvVo…
Natalie retweeted
Today in the Lindsay Clancy trial
a forensic psychologist was asked if he had ever heard of akathisia.
He said no🤔
Akathisia is one of the most distressing side effects of antipsychotics.
Inner restlessness that can feel unbearable.
We detail here:
psychiatrypodcast.com/psychi…
How can anyone take this guy calling himself "ME/CFS Science" seriously when he ignores not only the overlap in symptoms but the objective findings (alpha-delta sleep/"alpha EEG anomaly") & elevated cyclic alternating pattern (CAP) rate shared by "post-viral syndromes" & UARS? 🤦♀️
Replying to @mecfsskeptic
2) This was 10 years before the COVID-19 pandemic broke out (and many more years before people started denying a connection between LC and other postviral syndromes such as ME/CFS).
I say "overlap in symptoms" not identical sx since PEM isn't a recognized sx of UARS/OSAS in the lit (unrefreshing sleep, fatigue, cognitive dysf., orthostatic intolerance & fibromyalgia all are tho—see @nataliezzz3 pinned post). Discussion of above study:
s4me.info/threads/chronic-wi…
Natalie retweeted
The ME/CFS community already started discussing the risk that SARS-Cov-2 would cause long-term disability and an increase in ME/CFS incidence in January 2020.
Months before the term Long Covid was introduced.
Some facts about Covid and #LongCovid
1 LC was first identified, defined and named by Covid survivors
2 Research on LC started and built upon research on Covid and SARS-CoV-2 infection
3 People with LC are responsible for LC recognition by 2020-1
Natalie retweeted
The Sun ran an article about my experience of akathisia! With commentary and mentions from @markhoro, @KatinkaNewman and @AkathisiaAlli. Here's hoping the article hopes to improve recognition of this awful condition.
thesun.co.uk/health/40062691…
Natalie retweeted
Excited to announce that a new organisation has recently been founded called Iatrogenic Research Alliance looking into researching protacted withdrawal from SSRIs.
Website link is below 👇
Natalie retweeted
The Right to Take Antidepressants and the Right to Stop
Because antidepressants affect such intimate areas of human experience, they can become deeply bound up with identity, both for people who believe they helped them escape terrible suffering and for people who believe they caused terrible suffering.
Neither group can establish causation with absolute certainty. Yet people who feel helped may aggressively attack those who discuss harm because it threatens the meaning they have given their treatment. Equally, people who feel harmed may attack those who report benefiting. I see both responses repeatedly on this platform. Neither is helpful or acceptable. One person’s experience does not invalidate another’s.
Ultimately, whether someone takes, continues or stops antidepressants is an individual choice. If, after years of praising them, you decide that you want to stop, that is legitimate. If, after spending a long time trying to stop, you decide that you want to restart, that is legitimate too. Neither decision determines your worth, strength or credibility.
Clinicians should explain the evidence, uncertainties, risks and available options, and support safe tapering when requested. They may offer their professional opinion, but they should not use elaborate psychological theories to explain away an informed preference they dislike.
The final decision belongs to the person whose mind and body are affected. Not to whichever paradigm is being defended or attacked.
“He keeps a reminder to himself in his Notes app: “What is your purpose? To love myself and feel confident, proud. To be a great husband (someday), father (someday) and uncle,” he wrote. “To live free of antidepressants.” 🚨
The line “to live free of antidepressants” sounds straightforward. But it can also become a highly weighted prediction at the level of identity - e.g being medication-free is part of what it means for me to be well and to live the life I want.
An important aspect of this antidepressant debate gets relatively little attention: the distinction between
1. Lived experience
2. The explanation constructed for that experience
3. The action that follows from that explanation.
They are not the same thing.
It forms such an important part of clinical practice to understand and deconstruct.
This is fundamentally a predictive-processing issue or lens.
A person may experience emotional blunting, anxiety or a change in sense of self etc …
That experience is real.
But the conclusion “the antidepressant is causing all of this” is a reductive model no different to saying I am experiencing depression and the medication will address all of it .
It may or it may not.
And finally the the action from that conclusion 👇
“Therefore I need to come off the antidepressant” is then the action policy generated by that model.
The difficulty comes if distress returns.
But this distress is also filtered at the level of identity.
Does needing an antidepressant again then mean I am less free? Less confident?
Less worthy of pride?
I see this dilemma often clinically.
Value and worth conditional on an outcome ( often one outcome) - That itself has removed ‘freedom’ - the freedom of choices / alternatives - a classic predictive trap.
It’s so commonly seen in clinical practice but not commonly discussed.
Psychodynamics explores this but has missing components.
Uncertainty is extremely difficult to navigate, particularly when someone is suffering.
One way of resolving it is to collapse multiple possibilities into a single certain explanation: it is the antidepressant.
Sometimes that explanation may be correct.
( judged so only because the chosen outcome was reached)
The problem is not whether it is right or wrong; it is what happens when certainty closes down every other hypothesis.
IMO Good clinical care should help people navigate uncertainty while keeping several explanations and therefore several possible actions available.
That preservation of options is often the most important part of the process.
#protractedwithdrawal is not withdrawal, it is SRI-induced neurological dysfunction #SIND
Natalie retweeted
Replying to @PSSD_Info @markhoro
SRI "protracted withdrawal" presents a fascinating scientific opportunity if we actually study it for what it is and stop pretending that it's an extra-long withdrawal syndrome/injury caused by acute withdrawal. This (from @awaisaftab) is probably the most analogous to PW IMO. 7/
Ex. of a "protracted withdrawal" case lasting >3.5 years following 4 days of Lexapro on Surviving Antidepressants (& you can find other reports of cases like this). Of course this can't be withdrawal, but these cases can be accommodated under a tardive drug effect framework. 🧵1/
The PW case following 4 days of Lexapro was within 1 year of stopping mirtazapine, so perhaps still within the core vulnerability window for PW; in my case the most recent prior exposure was 6+ years prior—perhaps these types of cases require longer (at least weeks) exposures. 7/






















