Out of the wilderness: New scientific research and major awareness campaign

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.

  1. 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.
  2. 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.
  3. 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 @Greek):

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The announcement of these projects represents significant progress across the entire issue, punctuated by a scientific study led by researchers with world-leading expertise. We hope this study will be the first of many.

Two years ago when I joined the moderator team, we were a small group of patients operating an online support forum. Now, we are a registered charity with a significant awareness footprint and the support of world-leading researchers. Although progress can at times appear slow, this demonstrates that even when the deck appears stacked against us, our community can move forward through simple but courageous action.

We hope this is a tipping point in the history of this disease. Never has there been such momentum on multiple fronts, nor a more important time for action over ideas.

Fundraising

This opportunity will move ahead much quicker with your support.

Over 400 patients responded to our patient survey. If each respondent donated $100 EUR next week, the study could begin, pending logistics of patient samples. We understand patients are not always able to contribute large sums. However, this equation highlights that our fundraising goal is very attainable if even a fraction of patients contribute.

Many patients also donated to Dr Healy’s RXISK prize, which appears unlikely to reach it’s $100,000 goal in the near future. Any patients who prefer contributing to this study are encouraged to contact Dr Healy’s group for a refund.

We also encourage patients to utilise the GoFundMe templates to maximise fundraising.

Attempts to find therapeutic relief and funding effective research need not be mutually exclusive. Please, consider giving what you are able.

Speak up

A year ago, there were a small handful of videos on YouTube from PFS patients speaking publicly. Now, they fill the top search results. This community should be buoyed by the actions of these brave patients. It is important to note that these videos have given researchers important context of the situation.

However, our work should not end here.

Patients often lament the lack of interest in PFS as a public-health issue from scientists, clinicians, regulators and the media. If we do not become more visible, few will appropriately acknowledge the scale of this problem. We do not need patients writing paragraphs about what PFS is, and how to treat it. We need patients to speak up.

Please get in touch if you are willing to speak publicly. This simple but courageous act will contribute directly to progress on all fronts.

Amplify our efforts

Over the coming months we will increase our digital presence significantly.

Patients can amplify our work to boost our Google and YouTube search rankings, and interest in the issue.

Volunteer

Although we have recently welcomed three new moderators - @Wintermoon, @M_C and @telpek - we’d love for more patients to get involved.

Anyone is welcome to volunteer, including family and friends. However, we particularly encourage anyone with skills in marketing and media to reach out, as this will be the focus of upcoming work.

For a condensed version of actions patients can take to make a difference, please visit our new page

Thank you once again to everyone who has contributed to our recent work and we look forward to the next phase of PFS Network’s efforts.

With enormous gratitude,
Mitch

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We owe a huge debt of gratitude to @axolotl, formerly Awor and more recently @Sugarhouse as this is a landmark opportunity that’s the result of four years of intense work behind the scenes. To have such credentialed scientists on our side, people who are essentially world leaders in their field, is no less than astounding and that cannot be stressed enough.

As a community we have to recognise that this is a unique opportunity that likely won’t come about again. Let’s grab it by the scruff of the neck.

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Amazing work guys. I want to thank all of those involved from the bottom of my heart. Now let’s rally together towards a new frontier of PFS awareness and research!!

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Damn it, if my brain fog is good, I can contribute 500 euros a month.This is really the only hope

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Thank you to all the moderators and everyone at PFS Network. Your work gives me a lot of hope.

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All Hail @axolotl and @Sugarhouse and my fellow moderators.

If you’re reading this it might be fair to say that without the significant effort that has gone in to this work then you might be totally on your
own.

This is a new dawn for us. Seize the day!

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Well done guys. This is great news. I will keep donating regularly.

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Great news! I’m very thrilled that we finally got some news about future studies.

I have a question about the funding. Is there a set date on when the funding needs to be completed?

I’ll be happy to donate 1000 euros, but I’ll have to wait until next paycheck (25th November).

Also if new samples will be required, I volunteer to take a flight to Germany and donate it.

Thanks everyone who’s been working hard to make this opportunity possible.

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@axolotl, @Sugarhouse: I am consulting a professor of endocrinology/andrology in January, who I have heard is aware of PFS. What can I do to convince him of joining in these efforts?

Also, I am happy to volunteer for participating in any study. However, I am a saw palmetto case. I suppose I will not be eligible?

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There’s no specific deadline atm man. Obviously it’s important we hit the target sooner rather than later as none of us are getting any younger and we can’t get the ball rolling unless we do, but the donation page will definitely still be open on 25th November.

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Just donated 250 €. Best would be you make a sign to every donator like to the survey members. Every body can donate from 20 € to 1000 and more €.

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@axolotl You can contact all the German newspapers and the NDR who already made the report about the tricks of the cosmetic industry include PFS and Prof Porst Hamburg…
I think you need a working title “Holstein Study”.
And a summary of the project to contact.

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They’re recruiting for study volunteers at the moment – but if that’s needed, the forum will be the first to know.

I don’t know if we need more scientists to join right now either, but more awareness is always good. Point her or him to the Baylor study or this list of studies.

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I’ve been on this forum for over 10 years now… it used to be a place where random anonymous strangers would rant about the cruelty of Merck, and about the latest supplement fads. There were sane voices here and there, of course – but it never felt like a coherent community pulling together. With this post, I’m seeing that it’s finally turning around. We are becoming a community of patients that are working together to commission the right scientific studies - on our terms - directly looking for the disease mechanism.

I am beyond impressed at what @axolotl and @Sugarhouse has pulled together here. They’ve really met their moment – now we need to do the same.

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Amazing, great work! This new announcement gives me a lot of hope.

It’s just amazing to see the amount of effort and work that’s being done by @Sugarhouse, @axolotl, and everyone else involved, especially in raising awareness and pushing new scientific research.

I will also be donating very soon, and I will keep contributing what I can miss. If we all make monthly contributions we can reach the fundraising goal faster.

Also Germany is here nearby, I am willing to participate in the future study aswell.

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Thank you everyone. To answer a few questions:

  • @Cbrandel - thank you so much for the generous offer. That is very kind. We do not have a set date for funds to be raised. Simply put, the faster we raise the remaining target, the faster we get started.
  • @Crembo - it’s fantastic to hear the Professor is aware of PFS. While we don’t need any more researchers currently, there are other ways he could support our efforts. Sharing with him our studies page, YouTube channel and explainer video will make him more aware of the key features of PFS, such as its multi-systemic nature, the crash, and further susceptibility to worsening if androgen signalling is disrupted. Unfortunately, even many clinicians aware of PFS are unaware of its key features and the full extent of its horrific nature. You could also encourage him to improve awareness by following us on Twitter and sharing information about PFS with his colleagues. Those are very simple but needle-moving actions for the issue.

For anyone who has indicated an interest in donating sample tissue, thank you also. This is not currently a requirement but if that changes we’ll let you all know.

Thank you also to all of you who have donated overnight. We are humbled and deeply appreciative.

Take care,
Mitch

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