Dear fellow patients,
I am very pleased to announce that PFSNetwork is now a fully registered charity. We would like to let you know about huge progress regarding our work towards awareness, and an opportunity to support exciting new scientific research.
Youtube content and upcoming press coverage
Our new video podcast series is a landmark in raising awareness of the disease we suffer and the potentially horrendous human cost associated with severe cases. We are indebted to our guests, particularly patients and their families, for participating. Through this courage and the hard work of our team, more people are now speaking out through this project alone than in the prior two decade history of this stigmatised condition.
These accounts show the happy normality of the patients’ flourishing lives prior to taking Finasteride. Far from the weird impression given by the front page of an anonymous forum, these videos show the stark consequences upon real lives.
These stories of vibrant people counter fictions, often from those selling the drug, that dismiss (and perpetuate) the permanent suffering and loss of life caused by a cosmetic product. Invariably, the patients had no idea the risk they were taking.
It’s heart breaking that I type this knowing that more lives will be pointlessly destroyed solely because people will not receive adequate warning about the the existence of this disease. Discussion on the potential for permanent multisystemic side effects is now called for in case controlled studies and medical literature reviews. The status quo is incomprehensibly negligent. Practically no young man is giving informed consent when taking this drug.
The podcast is now available on YouTube, and we encourage all patients to support this landmark endeavour. Patients can help increase the visibility of this important project simply by liking our videos, leaving a comment and subscribing to our channel. These three actions help to significantly improve the reach of our videos on YouTube.
As well, I’ve spoken in person to a journalist working on an in depth story for a reputable publication with over a million readers. We got along very well, and I am confident that this will mark the most significant and considered coverage of the condition to date. Many patients and family members who spoke our podcast have also taken part in this, and we are very optimistic this will move the needle regarding awareness of the breadth and reality of this harrowing disease. Mitch is currently liaising with more publications to support this awareness drive, and we have a budget to expand our digital marketing.
Please contact Mitch (@sugarhouse) privately if you are willing to speak publicly and contribute to the next series of these important efforts.
Upcoming research: Please support if you are able
The research published by Baylor has established significant and widespread gene expression changes, supporting tissue-specific epigenetic changes as underlying the pathology. Pathway analysis demonstrated significant deregulation in gene expressions with relevance to specific multisystem symptoms that have often been dismissed as impossible when reported by PFS patients. The breadth of the symptoms well reported by PFS patients now has a clear biological correlation to these significant epigenetic differences.
The failure of clinicians to consistently record and report the full clinical picture has led to an increasing volume of hypotheses that build upon an inaccurate characterisation of the disease, or compartmentalise parts of it. This has the concerning potential to waste money, and more importantly time, that patients cannot afford. Thus, the Baylor study has provided the most important information yet regarding the pathophysiology of PFS and clarifies many important questions such as the specificity of androgen target tissue (contrasting with the findings of the assays in the Harvard study which used an inappropriate asymptomatic tissue).
Expected to begin in early 2022, we are now fundraising for research at The Institute for Human Genetics at the University Medical Center Schleswig-Holstein in Germany to directly build upon Baylor’s important results.
Pending ethics approval, this important study is provisionally titled Elucidating epigenetic mechanisms as a cause of post-finasteride syndrome.
They will be using state-of-the-art high throughput sequencing to investigate potential changes in the spatial organisation of chromatin that could provide key insights into pathological drivers underlying the altered gene expression in Post-Finasteride Syndrome. Additionally, methylation analysis will be conducted. While Baylor’s RNA microarray results indicate a what, we now need to expand into the why with these more modern investigative techniques. Identification of driving epigenetic changes will allow for accurate modelling with the objective of understanding the core pathomechanism and hopefully an eventual target for precision medicine treatment of PFS.
The people involved in this project are capable, interested, aware of the breadth and severity of the multisystem impact of PFS, and keen to uncover the core mechanisms. The scientists conducting and contributing to this research have world leading expertise. The supervising lead has recently diagnosed a molecular level androgen insensitivity driven by epigenetics as opposed to code variation. Another scientist lending his collaborative input has published in Cell reports evidence that overexpression of the AR is able to drive genome-wide chromatin relaxation and gene expression alteration in refractory prostate cancer. Finally, sequencing and interpretation expertise will be lent by a professor who published the state of the art in structural and quantitative chromosomal rearrangements, their analysis, and role in disease in Nature reviews. These are world leading publications and we are thrilled with this fantastic opportunity to have engaged scientists with such cutting edge expertise and resources.
We greatly appreciate any financial support patients can manage, and realise the sacrifices patients and their families likely make to do so in a state of ill health. This is why we have spent a very long time consulting and considering our options. We have not gone ahead where we are not satisfied a project has at least the potential to be significantly worthwhile and provide a practical route to further elucidation. Furthermore, our team will be funding approximately half the cost personally. A firm final cost has not been determined as we are hoping to use existing samples for the sake of time and cost, but may need to arrange more samples to be taken. As such we are currently targeting around €80,000, but will update you all when we know how the cultures are growing, and if we will need to take new patient derived samples. We wanted to begin fundraising early to launch the content, and in the interest of progressing as quickly as possible.
From this point, we should make clear our organisation will no longer support any project, academic or group that does not accurately acknowledge the full clinical picture of PFS and its unique peculiarities. These include the full symptom profile, a subsequent fragility to further endocrine disruption and, of course, the post withdrawal crash reported in a vast majority of cases. Failure to do so will cause wasted resources and delay mechanistic understanding of this disease. This will increase the burden upon us - and upon me.
We operate this forum for two reasons: The clinical record, and to advance scientific understanding of the issue. After wide consultation with the most appropriate experts, this is what we are offering to patients. However, as you can see the expertise here is beyond any forum member. This is a core strategic goal for our charity and this issue. Legitimate enquiries can be made, but please understand we do not have all the answers before the investigation itself is complete. Questions that are antagonistic and attempts to undermine support for the study will be removed.
How you can help
We have several options for patients who wish to contribute to this opportunity. Please read carefully and reach out to Mitch (@sugarhouse) if you have any questions.
- Donations under $250. Any donations under $250 can be made on the donate page of our website. Please note these transactions will incur a small fee, so we encourage patients to calculate that into your donation amount. The donation currency is set to EUR.
- Donations over $250. If you wish to contribute more than $250, we have a multi-currency bank account to which you can make a direct deposit. If you think you may make multiple small donations that amount to more than $250, please consider this as an option instead to minimise fees. This account avoids any transaction and currency exchange fees. Please contact Mitch (@sugarhouse) for the direct deposit details.
- GoFundMe’s. For patients who wish to fundraise more substantial amounts through their network, we have set up templated GoFundMe campaigns. Patients can access a ready-made campaign template, select PFS Network as the charity to direct funds to, and send it to their family and friends. The templates require minimal customisation and take less than 30 minutes to set up. Unfortunately, this option is only available for patients in the US, UK, Canada and Australia. Our goal is for 10 patients each in the US & UK, and 5 each in Canada and Australia to use this option and raise $500 each in their native currency. If we achieve this goal, we will move significantly closer to our fundraising target.
We hope you are as excited as we are for the next stage of progress in bringing this condition out of the wilderness and taking vital steps towards understanding the core pathomechanism of Post-Finasteride Syndrome.
Thank you for your support and ongoing courage
Axo
Edit (by @Sugarhouse)
Please note for anyone reading this thread that PFS Network is not the PFS Foundation. The PFS Foundation does not currently have any research projects they are fundraising for, so if you wish to directly fund our research project, please donate via our website.
Edit (by @Greek):
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