Guerrilla Patient Group Publishes Data Insights into Post-Drug Syndrome

Guerrilla Patient Group Publishes Data Insights into Post-Drug Syndrome

The reports are steady. The stories are raw and difficult. The problem of lasting physical, sexual and neuro-cognitive health damage from mass market medication has been known about for years. Yet doctors continue to fail their patients and have no idea how to fix the mess they’ve partly created.

At Propeciahelp.com we’ve been taking action on the problem directly.

In possibly a world-first, a patient group has built a survey comprised of several scientifically-validated instruments to gather data and generate insights into their condition. Primarily focused on Propecia, serotonergic anti-depressants, and retinoids (primarily Accutane) – all medications which share endocrine disrupting properties – we have now amassed nearly 250 individual user surveys, including over 150 post-finasteride patients. The standardised data in our results make for alarming reading, and give substantial insights into major features of this novel condition, which is devastating the lives of men, women and families globally after as little as one dose.

We’re now ready to share some of our early insights composed from the submissions of patients who have experienced persistent symptoms for at least three months without resolution after stopping their medication.

Erectile Dysfunction Gets Worse After Stopping

We used the International Index of Erectile Function (IIEF), to gather data on male patient experiences across the domains of erectile function, orgasmic function, sexual desire, intercourse satisfaction, and overall satisfaction.

Our data shows a clear worsening of sexual function for patients both on-drug and post-drug, for all involved drugs. This post-drug worsening is a unique and terrifying insight – showing that the side effects get worse after stopping the drug – and it lends support to the hypothesis that a shared syndrome is produced by the drugs.

Women Also in Big Trouble

We used the Female Sexual Function Index (FSFI) to gauge female experiences across the domains of arousal, desire, lubrication, orgasm, pain and satisfaction.

Women experienced a decline in their sexual function whilst on anti-depressants, Accutane or Propecia, like men, and their symptoms also continued after ceasing the drug.

Patients Totally Failed by Doctors

We used the Short Assessment of Patient Satisfaction to assess patient satisfaction with their treatment. Like the IIEF and FSFI, the SAPS is also a scientifically-validated instrument.

Legend:

  • One Doc: The patient has only seen one doc about this condition
  • Most Neg: Most negative experience with a medical professional related to this condition (patient has seen multiple)
  • Most Pos: Most positive experience with a medical professional related to this condition (patient has seen multiple)

These are completely damning results. Most survey respondents gave scores within the range of 0 – 10 or 11 to 18. Even the ‘most positive’ grouping were on the borderline of dissatisfaction and serious dissatisfaction with their healthcare outcomes.

  • A score of 0 – 10 indicates a patient’s healthcare has failed them very badly, and they are in need or urgent help.
  • A score of 11 – 18 indicates that a patient’s healthcare has failed them in several areas, and are in need of help.

As a benchmark, 70 – 90% patients should ordinarily be reporting satisfaction with their healthcare, and this should be kept in mind when viewing SAPS scores. These results show patients are being systematically failed by doctors who are unable to do anything about the lasting side effects from Propecia, anti-depressants and Accutane. This supports the many anecdotes over the long history of our forum, which reveals that patients experience dismissal as the norm, with the best they can hope for being an admission that their healthcare professional does not know what has happened. This is not good enough. Moving into 2020, patients do not have the option to consent to this unimaginable risk – patients are are never adequately informed of what can happen, and the irresolvable nature of the potential health damage.

Looking ahead,  we have a tonne more data and observations to discuss.  Our survey gathers up to 2500 data points per user – we’ve got a lot to work through. Keep checking back for more.

Click here for more information on the methodology and background of the Post-Drug Syndrome Survey.


If you’re a patient experiencing lasting side effects from anti-depressants, Propecia or Accutane that have persisted for at least three months after quitting, we need you to click here and find out how to submit to our survey. Our survey is producing vital data on the long-term side-effects experienced by patients who’ve taken these meds. Our early results are astonishing and powerful – but we would like more data still to take the issue forward. We need you to join in with the rest of us, now. You will directly help raise the profile of those hit by unacknowledged health problems after taking these medications. We cannot leave this situation to be a hidden epidemic of young lives left in tatters and the repeating tragedy of suicide due to suffering symptoms caused by these drugs that cannot currently be remediated. Let’s make the change we need happen together.


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