Iatrogenic Neuroimmune Disease Association (INIDA) is a patient-led community effort focused on documenting clinical findings and advancing the understanding of novel drug-induced disorders. Through community gathered data we have created our first research document focused on Post SSRI Sexual Dysfunction PSSD, and we have a long-term goal of initiating research into other post-drug disorders as well.
Drug-Induced Disorders:
Drug-induced disorders, such as PSSD, PFS and PAS, are a novel class of medical conditions induced by medications. These conditions are defined by the initiation of symptoms following exposure to a pharmaceutical agent, the persistence of these symptoms even after discontinuation of the offending agent, and a distinct clinical presentation that sets them apart as unique medical entities. They're termed iatrogenic, meaning they are caused by medical interventions intended to treat a patient. While medications are developed and prescribed to treat patients, they can sometimes lead to unexpected adverse outcomes in a subset of genetically susceptible patients, igniting disease mechanisms that result in the development of new medical conditions such as autoimmune disease (Nugroho 2017), He & Sawalha 2020, Dedeoglu 2009).
"Although it is now becoming well-established that various environmental agents can cause epigenetic changes, one class of compounds that has been largely absent from most studies so far, is pharmaceutical drugs. Based on our rapidly-accumulating knowledge of gene/environment interactions, it stands to reason that drugs in current therapeutic practice would affect the epigenomic state of genes" (Csoka 2009).
Clinical trials mostly fail to detect drug-induced conditions like PSSD due to limited duration, underreporting and primary focus on short-term side effects, with the lack of long-term monitoring which is necessary for a condition like PSSD that develops after the drug has been discontinued and can persist indefinitely. Furthermore, the stigma surrounding medical harm may inhibit medical professionals and academics from approaching these conditions objectively. The acknowledgment of drug-induced disorders remains poor, despite increasing awareness among those affected, the literature remains sparse, with limited research dedicated to understanding the underlying mechanisms of these conditions. Patients require acknowledgment, along with research efforts aimed at identifying medical remedies.
With the formation of INIDA, we hope to spark greater interest among academic researchers and encourage professional involvement in studying these conditions. We aim to focus research on the emerging neuroimmunological component which our data is indicating to be involved in these disorders.
INIDA was founded in early 2024 by a group of 5 members that has grown since. Our initiative is built upon research and collaboration over the past 2 years, ignited by developments that came to light in late 2022 stemming from Finland, where the first documented PSSD patient underwent thorough clinical examination in a university hospital. Their entire neurological status was examined, leading to the diagnosis of a novel, autoimmune inflammatory condition induced by the SSRI "Escitalopram". The peer-reviewed documentation of this clinical case is still underway.
This patient we describe as "Patient Zero" coordinated a local community of patients to participate in the same neurological examinations collectively. Diagnostics were conducted to examine the involvement of small fiber neuropathy through skin biopsy (Healy for RxISK 2022, 2022), as well as examinations into the autoimmune involvement through autoantibody testing. Several patients tested positive for these markers and it ignited the interest of the broader international patient community to investigate the emerging neuroimmunological component of the condition further.
After an increasing number of anecdotal reports in various online communities of patients receiving positive test results and clinical diagnosis of immune-mediated conditions, we took it upon us to document these findings and bring them forward to the medical community. This chain of events led to the eventual formation of INIDA. Based on our growing database of collected clinical reports and collaboration with medical professionals, we're increasingly becoming confident about the involvement of a pathology originating from the immune system in these conditions.
In January of 2025, we completed our first PSSD research document, after an extensive work process spanning from may 2024. Subsequently, we've registered the association formally with a coalition of 3 people. We hope to inspire patients to seek out the right medical care, spark greater interest among academic researchers and encourage professional involvement in studying these conditions.
33 year old man.
Has had PSSD for 19 years.
Involved in community research since may 2023. Responsible for tracking patient data, curating the research document as well as community management (discord).
Co-founder of INIDA.
e-mail: sfn-jonny@outlook.com
X : https://x.com/lobotapro?s=21
21 year old man.
Has had PSSD for 5 years.
Involved in community research since 2023. Curator of website, mod on discord, involved with work on the research document.
Co-founder of INIDA.
Woman in late 20s.
PSSD for over 5 years.
Main administrator on our discord server (community management). Creator of FAQ. Involved in research, collecting data and has done some work on the research document.
28 year old man.
Has had PSSD for 2 years.
Involved in community management.
Woman in her early 20s.
Has had PSSD for approximately 2 years.
Involved with social media.
Man in his 30s.
Has had PSSD for 3 years.
Consultant role.