Propeciahelp: An update on site efforts

General Discussion
#1

Dear members

As many of you know we’ve been doing all we can since our site upgrade to further the issue in the practical ways we can as a patient organisation. This has included assisting with publications and the development of the unprecedented survey the site offers to members.

Survey

The staff of this site continue to shoulder the clinical burden of systemic failures that persist after two decades. To do what we can to address the failure in clinical appreciation of the syndrome, our survey now gathers unprecedented and crucial data to illustrate what is happening to patients. This will ensure future scientific efforts appreciate the broad, novel and heterogenous symptomatic experience of patients. Standardised data is the only way to effectively communicate many facets of the issue and illustrate key realities that we have so far been unable to illustrate.

Many people are interested to know what we will do when we hit the participation goals and what the status is of the project. The next step will be to assemble the methodologies regarding the design, and prepare methods for statistical analysis of the data. The latter, unfortunately, is a lot of technical work. We intend to have this published in some way, and will either prepare and submit this ourselves or ideally partner with a publishing clinical professional with epidemiological experience. We will begin outreach regarding this soon.

We deeply thank everyone who has taken the survey thus far and especially those encouraging other patients to do so. Anyone with a strong familiarity with the R programming language is encouraged to message @awor about assisting in this important work.

Literature review

We are tomorrow publishing on our site a substantial document entitled Post-Finasteride Syndrome as an Epigenetic Post-Androgen Deprivation Syndrome: A potential pathological link between Drug-Induced Androgen Receptor Overexpression and Polyglutamine Toxicity

This is a review of medical literature conducted by the administrators of this site, and was written to support our contact with specialised biologists we believe may be able to pursue basic science research. This is not aimed at a general readership, although the section summarising all published research into PFS may be of general interest.

This has been an internal document for some time, and we were hoping to take time to implement further professional feedback regarding presentation including the commissioning of more illustrative diagrams throughout. However, due to the present uncertainty we have decided to make this available on the site now. We have spent time making this as user friendly as possible and have implemented tooltips for quick access to every citation, a per page bibliography and in page navigation.

Wikipedia

@sugarhouse has helped to publish an update to the wikipedia page of finasteride highlighting PFS and recent evidence regarding the condition. Wikipedia is a trusted resource and the fact the information on finasteride had not been updated to reflect evidence regarding PFS was an overdue omission. This is good news in a time young men are still not appropriately informed by the product labeling or their clinicians about the existence and full extent of this devastating syndrome, despite the majority conclusion of literature reviews on the subject.

I hope also this reaffirms the importance of pulling together to work towards effective achievements.

Organisation of practical research and the impact of Covid 19

At the end of last year we began efforts to gather the interest of scientists with appropriate expertise working with cutting edge technologies. We have been in discussions with scientists in a couple of leading centres to propose, design and (with appropriate fundraising) conduct research that would use next-generation sequencing technologies to hopefully uncover important information about our condition. This would have investigated urgent priorities including the potential for underlying genomic differences in PFS patients that make us variably susceptible to it.

It will come as no surprise that the current global pandemic has effectively halted these efforts. Personally, I am very saddened that this is the case given how hard everyone has worked and the progress made. One of the scientists we were in contact with is at the forefront of what we view as applicable research, and someone I hope will lend their expertise to the issue in the future. It remains to be seen how research funding, cross-border research, and the world economies will recover from this crisis. It is my hope our efforts can be speedily resumed in due course. We are facing a setback here, as millions across the world are.

During the coming months I will of course be helping to manage the site projects and hopefully continuing to work on writing up the design methodologies behind the survey. However, I will be less active directly in the forum. I would like to again thank the staff for the tremendous job they do daily in keeping this site going. As significant mood-related symptoms are a factor for many patients, please ensure the site staff aren’t the target of frustrations during this period, as we all have more than usual to navigate.

I hope you are all coping ok with the additional challenges this strange time brings. Please continue to be brave.

Kind regards,

Axo

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Baylor study, part 1 - Penile vascular abnormalities in young men with persistent side effects after finasteride use for the treatment of androgenic alopecia. 2020
I demand immediate transparency from the PFS-Foundation
Research in progress/in pipeline
A letter to you, forum
#2

Thank you for the update…It means something just hear from the administration with some kind of news…People are on the verge of killing themselves…

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#4

Just wondering if anyone had a completion target for the survey that includes analysis and publication? I’d guess 2-3 years.
Seems like a phenomenal amount of work being done just to get scientific interest.
The one positive is folk will continue to get sick from these drugs regardless of the virus and that means more participant’s for the survey.

#5

Not if people keep ignoring the reminders.

#6

2-3 years ahead that might get us more scientific attention sounds pretty brutal but I suppose it’s the sad reality. Super grateful though for the tireless efforts of the admins and mods though to get something started

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#7

Thank you so much for the update, it’s appreciated more than you could know. Was not in a good place

Let’s not roll with completely made up numbers please.

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#8

Here is a link to the paper, everyone should read it. I won’t lie I felt physically sick after going through parts of it especially the section on future research. The damage
caused seems devastating. Everyone will have their own opinion.

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#9

All we have to do to get a cure sooner is more survey respondents. Nothing moves forward as long as we don’t have enough Accutane and SSRI respondents. It’s been over a year now. Sooner or later the community needs to step up to the plate and publicize the survey, get it filled out.

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#11

We have a long road ahead of us, we all knew this already. There’s no quick fix to this and the sooner everybody accepts that reality the quicker we’ll begin to progress. We have to do this thoroughly; a half-arsed, rushed attempt at discovering the disease’s pathology will not yield the results we want. We can do this right, or we can do it rushed. There’s no compromise.

There are, however, plenty of reasons to be hopeful and with collective work we can achieve a lot. If we can discover the pathology of the problem - which, with the right people on our side, seems doable - then we can afford to be optimistic.

Let’s keep chipping away and doing everything we can to aid the admins, the mods and the community. As has been mentioned, recruiting more survey participants is the number one priority for us all.

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#12

It certainly doesn’t sound pretty that basically pfs etc patients would need to be examined after their death in order to further understand the disease.

#13

I don’t see anything new here for people to be depressed about. There’s absolutely nothing unexpected in that paper. We just simply have to press on with getting the admins the preliminary data they need to make research grant applications as well as to continue to reach out to Accutane, SSRI, Trazodone, and other sufferers to expand and diversify our community presence. Once we are a unified group of men, women, and children large in number, we can start to have a voice and obtain recognition. Then things can spiral upward.

Until we do that, no cure for us.

The era of denial, escapism, assumption that if we sit here and complain and/or commiserate enough then the world will deliver us a cure ought to be over now. I hope it’s also clear to everyone that googling herbs and popping pills we read about on Wikipedia isn’t going to get us anywhere either.

All that stands between us and a cure is our unwillingness as individuals to do work to bring it about. Hopefully it’s very clear to everyone what that work is (reaching out to other communities, getting survey filled out, diversifying our demographic, becoming too large and serious to be dismissed or ignored anymore).

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#14

@malfeitor examining dead brains to understand PFS, it makes you realise how messed up this condition is. I’m worried for myself and everyone here. The realisation makes me feel sick to my stomach. The amount of research needed feels overwhelming,

#15

I hate to sound like an ungrateful pessimist but how are we supposed to gather significantly more people to take the survey if the number of people affected - at least visibly in the internet - isn’t that large? How many people would we need to get to gain further attention by scientists? Would 1000 be enough? Are there even so many people affected in other places of the internet to reach out to? Wouldn’t getting 1000 people to take the survey take another 2-3 years? Is 1000 even enough or still a negligible number for science?

Again please don’t misunderstand: I totally and wholeheartedly support the survey and the impressive efforts for this patient community. Just feeling pretty uneasy right now.

#16

They already had victims brains and spines years ago but never heard anymore it just dried up like Baylor.

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#17

I share your uneasy feelings on this one…

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#18

Hi Axo, just curious why you aren’t able to apply for an NIH R21 or R01. As far as I know, there is no interruption in current funding or the program in any other way generally.

#19

Well, I would hope that people would see taking the survey as a non-negotiable task and that the community would recognise that people not taking part isn’t really acceptable.

Year on year, sign ups go up and so we should reach each milestone quicker than the last if we all work together.

On top of that, I hope that we will see people getting onboard fully in other communities. It SHOULD be easy to get many more people involved if Isotretinoin and Anti depressant patients take this seriously.

Open call, once again though - if you have been off a drug 3 months and still have side effects, you should take the survey.

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#20

I wouldn’t be surprised if more than 1% of people who have taken SSRIs and Accutane currently suffer these side effects and have no idea it might be attributable to the drug.

That’s millions of people.

They likely think they are just depressed, or have naturally low hormone levels, are naturally asexual, or whatever have you. It’s pathetic all we have been doing is sitting here playing with herbs when the world could know about our condition and scientists could already be working with data off of thousands of people of all different creed, gender, and age. We could’ve been 10 years ahead of where we are right now. Instead, awor likely needs to move on with his career/livelihood and apply his expertise to greener pastures, Mew already did. One day we will get serious I suppose. Or we’ll all just die tragic lives like all our predecessors.

We’ve been sitting here doing nothing expecting awor and axio to do everything like some kind of thankless charity cause.

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#21

On the whole I certainly very much agree with you. Still even if you frequently reach out to the communities asking them to do the survey many just won’t. Obviously no one can be forced. I suppose it’s fatalism and disbelief something positive may happen. While I can perfectly understand these feelings there still shouldn’t be an excuse not to take the survey even if you’re skeptical. I talked with the professor who is in contact with the German pssd community and he says that they see too few people that do show a more or less clear clinical profile of pssd. He absolutely acknowledges the condition. Sure there has been bias from the medical side in the past, lack of awareness among doctors as well as some patients themselves but still numbers are fairly low/cases are pretty rare from what professionals in clinics see. Granted pssd has just been acknowledged rather recently. So this doesnt necessarily reflect the real number of affected as you rightly point out. It’s just a bit tiring trying to get people to participate yet they won’t. Thankful though for everyone who takes the survey nevertheless.

#22

Perhaps it’s time to ask ourselves do we need to continually acknowledge and perhaps reinforce the case against us?

Delusion is one thing and pessimism is another, but are either contagious?

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