I've been working pretty hard lately, emailing psychiatric experts from leading hospitals around the country, as well as emailing a few news outlets/investigative journalists. While I have scores and scores more to contact (as well as lawyers to contact), the results have been terrible: nobody has responded.
We have a serious, serious multifold problem, aside from our individual suffering, which quite frankly needs to be discussed more frequently on these threads:
First, I would like to suggest that there are probably thousands of people suffering from what we all are suffering from, since most people will likely not post on internet forums or even find them, much less this forum with its 6 threads on paliperidone. Second, our 6 threads on paliperidone suggest that the severe depression/anhedonia and severe sexual dysfunction, that constitutes what I call "paliperidone syndrome" is the overwhelmingly reported major side effect, to the exclusion of almost all other side effects, and that's cumulative! The drug label for paliperidone makes no mention whatsoever of "severe depression/anhedonia," but given the reports of users on these threads (where, mind you, the threads are for all side effects), it's clear that since it is orders of magnitude more common than all other known side effects cumulatively, that makes it likely that there are tens of thousands of people suffering from this syndrome in the Western English speaking world alone, and much more world wide. Consider, also, that it is estimated that between a million to a few million people are on antipsychotics annually in the United States.
We have a serious problem because from all indicators, the psychiatric establishment has utterly failed us. The drug companies want to sell as many of these medications as possible with complete disregard for human safety. Lawsuits against the drug companies involved in the manufacture of antipsychotics (Eli Lily, zyprexa; Bristol Myers Squib, abilify; Janssen (Johnson & Johnson) paliperidone) for millions, to billions of dollars! suggest a repeated course of misconduct. Every psychiatrist and even standard doctor I have spoken to have basically not accepted responsibility for poisoning and destroying the lives of individuals like us with "paliperidone syndrome," they do everything to deny the existence of these adverse side effects, they have zero cure for us, and, worst of all, they make no effort and have no system of reporting our cases of adverse side effects to any database, to the public, to the rest of the medical community. That means there is no effort underway to collect our data and try to solve this terrible syndrome, much less to acknowledge it, which is the most flagrant fundamental violation of the essence and tenets of medicine that I can think of.
The only approximation to this syndrome that the psychiatric establishment has acknowledged, itself is terribly insufficient. In 1992, they coined the term "Neuroleptic Induced Deficit Syndrome." However, this syndrome does not include the common severe sexual dysfunction. It covers some aspects of antipsychotic induced depression and anhedonia, but it does not, with any seriousness, acknowledge the full extent of terrible effects and anhedonia. Finally, to add insult to injury, in the 30 years since this term was coined, I have, with thorough investigation, only found a grand total of TWO papers discussing the treatment of people suffering from "Neuroleptic Induced Deficit Syndrome." The two papers are both Japanese (published in English), covering a grand total of a measly FOUR people. For the record, none of these individuals had sexual dysfunction, and they seemed to be the fortunate ones, who recovered very quickly after discontinuing antipsychotics (none of which were paliperidone). Two of them tried ECT, one tried mirtazipine and another tried venlafaxine. It is my opinion that the depression treatments in these cases were irrelevant and the key factor was discontinuing the antipsychotics. For those of us with the most severe version of "paliperidone syndrome," in that, we've had it for over a year and we've been off paliperidone for over a year and, that we've tried numerous antidepressant therapies and sexual dysfunction low libido no sexual pleasure therapies, and nothing has worked, these two papers, covering a measly total of four people, are pretty much useless.
We on these threads owe it to ourselves, to each other,
and to the probably thousands and thousands of others suffering what we are suffering from (alone, without help) worldwide and accumulating over decades and decades--
we must take more extensive action than simply waiting around.
We need to talk to our doctors and psychiatrists and press them to take this problem seriously, to try to find a cure, and to most of all, report our cases to databases and share our cases to the wider medical community.
We also must take action and at least press the media and make as many contacts as we can, to gain notoriety for our plight and all its aspects. Without public and media pressure, the corruptions in psychiatry will not be held accountable and nothing will change, and this situation is precisely that: systemic corruption, unacceptable violations of medicine, sheer callousness and deliberate ignorance, and a completely unacceptable situation which must be discussed and remedied.
We need public pressure to force the psychiatric and medical community to make studies and collect the real-world patient data on adverse effects of antipsychotics and those suffering from "paliperidone" syndrome. If this does not occur, then we are doomed. We will never have a cure and we will never have justice and thousands and thousands of innocents will needlessly continue to suffer and have their lives destroyed (besides the endless thousands that in many decades have probably already had their lives destroyed).
As soon as I find an investigative journalist/organization willing to help us, and the more the merrier, I will put their contact information/s here so we all can contribute. I am also, as I've said, contacting psychiatric experts nationwide to help us in finding a cure, acknowledging the problem and conducting data collection and research--this will likely be a complete failure (on their part) even after contacting hundreds, but if I attain any success, I will also report back here.
However, I strongly urge all of you to take the initiative and not merely "wait" around. I urge you yourselves to contact media outlets; I urge you yourselves to get in touch with your treating doctors and psychiatrists; I urge you yourselves to contact psychiatric experts nationwide (or wherever you may be); I urge you yourselves to even contact lawyers for free consultation about this problem.
Thank you
