ABOUT US
The Initiative Of INIDA
Iatrogenic Neuroimmune Disease Association (INIDA) is a patient-led research organization focused on documenting clinical findings and advancing the understanding of novel drug-induced disorders. Our first publication focuses 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:
- Post SSRI Sexual Dysfunction (PSSD)
- Post Finasteride syndrome (PFS)
- Post Accutane syndrome (PAS)
- Post-Acute-Withdrawal Syndrome (PAWS)
- Neuroleptic induced deficit syndrome (NIDS)
- Fluoroquinolone antibiotic toxicity (“Floxies”)
- Autoimmune/inflammatory syndrome induced by adjuvants (ASIA Sydrome)
- Akathisia
- Tardive Dyskinesia
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 implicating to be involved in these disorders.
PSSD symptoms based on Goldenhour’s survey results:
Sexual Dysfunction
- Loss of Libido (90%)
- Genital Numbness (90%)
- Erectile Dysfunction (84% of males)
- Anorgasmia (77%)
Cognitive Dysfunction
- Emotional blunting & anhedonia: (84%)
- Memory loss: (67%)
- Brain fog: (66%)
- Speech disturbances: (61%)
- Aphantasia: (61%)
- Reduced general cognition: (60%)
- Blank mind: (49%)
General:
- Fatigue: (63%)
- Insomnia: (52%)
- Increased/decreased sweating: (44%)
- Vision disturbances: (42%)
- Skin numbness: (38%)
- Urinary symptoms (eg.incontinence, frequency): (37%)
- Tinnitus: (35%)
- Temperature regulation: (30%)
Participate in our survey
The characterization of "PSSD" has historically been confined to the symptoms of sexual dysfunction, largely due to the lack of data and systematic analysis conducted into the condition.
We're actively conducting new patient surveys to document the full scope of neurological symptoms reported in our patient group, in order to assist scientific research for the establishment of the pathophysiology of the condition.
The Story Of INIDA
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.
