Ongoing research into PFS

[admin]

Originally published at: https://www.propeciahelp.com/blog/ongoing-research-into-pfs/

PFS is a variable and potentially devastating condition, but its molecular mechanism(s) are currently unclear. The predispositions that cause a subset of men to develop PFS from as little as a single exposure to a 5-alpha reductase inhibitor remain unknown. Reported symptoms include (but are not limited to) loss of libido, erectile dysfunction, suicidal ideation,…

[Tomas]

Very good post. Keep us updated.

[BadLuck]

Interesting that both ongoing studies are focused on epigenetic changes caused by pfs, with the Baylor study going on 5 years now and the Melcangi Italian study started in the last year or so.

Why would the PFS foundation fund two studies into the same issue/cause? Has Baylor decided to stonewall with the release of their study so the foundation had to fund a second one? Are the two studies looking at different types of epigenetic changes so that’s why there are two? Maybe the foundation lost faith in Baylor and decided to cover their bases with a second study. Insights?

[Northern_Star]

I think it is fair to assume that both studies will have a different focus on epigenetic changes and/or will use different methods to look at them. I don’t have any inside knowledge, but reading the study announcements it is clear that both studies will look at a lot of different things besides epigenetic changes and it is also clear that the Italian study will look at epigentic changes at the level of the 5ar enzym specifically, while the Baylor study appears to have a much broader focus.

These people know what they are doing, so I am sure they won’t all look at the same stuff and that overlap will be minimised (although confirmation of changes from two different teams with different data sets has some value, too).

From what people have written here and on SolvePFS, the Baylor study is ongoing and it’s just a lot of data to process. That’s why it takes so long. But apparently, the results will be significant. Let’s wait and see. These two studies will hopefully increase our knowledge of PFS significantly.

[Tonster96]

I would really like to have a status update of the Baylor study.

When is the expected publishing date as of now?

I understand, that science takes its time. But in my opinion the scientist and the foundation should be sensible for thousands of victims desperetaly waiting for this study. So the least they could do is keeping us better informed about the status and why it takes them soooo freaking long…

[Scott.H]

I’ve heard a few users on this site state that this study should come out in a few months. Or early next year. Does anyone know where these statements are coming from? Does someone have an inside scoop or is this just a random rumor?

It seems odd that there is no outreach from Baylor, when there are tons of sufferers just waiting for an answer, I would imagine some spokesman might give a small update after all these years.

[holyhead]

Whistling in the dark…People who have called Baylor and they won’t even acknowledge that such a study exists…Sounds like politics as usual in this country…You notice that was not the case with melcangi…

[axolotl]

Hi @Scott.H. My co admin here @awor was closely involved in directing the design of this study and we maintain contact with the scientists involved in PFS. Regarding outreach to patients, this is not how studies of this nature work as it is a scientific study with a specific investigatory mandate and not front-line clinical engagement.

[Scott.H]

Thanks for the response @axolotl, that makes sense.

It feels like this study is very all-encompassing, in that it is investigating many underlying mechanisms of what might be going on. What are your thoughts on how this will impact us as a whole? Do you think this will provide a ‘smoking bullet’ that we can use to make ourselves better? Do we have any indication as to:

• Whether anything has been discovered?
• When there might be any kind of announcement?
• Whether there is any kind of blockage or shortage of funds?
• Any status update whatsoever?

[Baz44uk]

Great of questions scott.h
I’m looking forwards to seeing what the answers are as so many of us are pulling our hair out waiting to find out what the studies reveal …

[Rmoney96]

Hey man thanks for answering, your posts always excite me. If there are no good results will it still be posted ? (The study)

[axolotl]

Hey @Scott.H,

I talked briefly on the subject in a topic which veered onto the subject. You may find this answers a few.

Gents93 story - Post Aromatase Inhibitor Syndrome

I think it would be presumptuous to assume that could fund this study. However, @Northern_Star is correct in that science before peer review is kept quiet to protect the integrity of findings. In the case of this particular study obviously it’s been a long time but as the person here who knows the second most about it, it’s complicated. I think it’s worth appreciating the level of technical understanding on this forum generally. That is not meant as a slight - it is simply absurd to assume that …

Regarding funding, studies are funded in advance. I’m afraid I can’t give any more details at this time.

@Rmoney96

Hey man thanks for answering, your posts always excite me. If there are no good results will it still be posted ?

No problem. Yes, of course. We will talk about it in detail in a sticky topic including what we see as the next steps based on what the study reveals and what it means for us.

I would recommend revisiting this section of awor’s post from a year ago, as it may answer additional questions you have.

@awor

As the older members on this site may recall, I have been strongly involved in PFS research. I am one of the original founding members of the PFS Foundation. Together with a few others, I helped initialize the first PFS studies. The most promising study on PFS to date, in which I was deeply involved during the design phase, will hopefully publish in 2018. My work with PFS research has taught me that solving PFS is a long-term project. We won’t solve it in a forum, be it called propeciahelp.com or otherwise. But what we can do, is keep this problem on the map, by making the community as visible as possible. We can consolidate our knowledge and experiences in one place, like we have in the past. We can try to help each other the best we can, by sharing our experiences on how to deal with this problem. If we spread out all over the internet, it will hurt us on all accounts.

…

Finally, I would also like to say a few words about the science. I understand people have been missing feedback on the studies, published or not. Unfortunately, I cannot comment on ongoing studies. Whatever can be officially communicated will be published on pfsfoundation.org . All I can say at this point, after almost 10 years of PFS research, is that the picture is finally starting materialize. It is my hope that we will have a basic understanding of PFS at the molecular level within the next 12-18 months, representing a huge milestone in PFS research. With this understanding, we can then start thinking about what can be done about it. It will at least take some of the guesswork out of finding therapeutic options. Even though this milestone is coming within reach, we are not quite there yet. This is the main reason why neither the Foundation, nor any of the scientists or myself have been in a position to make any statements related to the root cause. Everyone of course has their own ideas and theories, but those are worth nothing. We can’t act on theories. In order to be effective, we need clear and precise molecular level targets.

…

I would like to wrap up the science topic with my take on the future of the scientific process and where my hopes currently lie.

I have reason to believe that the persistent side effects arising from:

• 5ARI’s (finasteride, saw palmetto, dutasteride)
• 13-cis-retinoic acid (Accutane, etc.)
• Various Antidepressants
• GnRH Analogs (Lupron, etc.)

are related in terms of a common molecular mechanism. Assuming a better understanding of the underlying mechanisms of PFS in the foreseeable future, it will then be realistically feasible to validate this hypothesis against the aforementioned patient groups. If it turns out to be true, such a common denominator would be the best thing that could happen to us all. We would then be talking about a problem of global interest, and funding of research will hopefully become a problem of the past. As said, division weakens. However, the opposite is equally true: Large groups are relevant, which inherently gives them power.