Propeciahelp: End of Year Update and 2021 Plans

General Discussion
#6

Its very sad that after all the PFS research that has gone on over the last decade most Doctors still do not believe PFS is real.

I don’t think anyone would take Fin if they were fully informed about ALL the side effects.

2012 seemed to have been the best year in terms of PFS public awareness

I think PFS will only hit home with the general public if a major celebrity admits to having it.

Back in 2012 I thought Propecia was going to be pulled off the market within a few years.

It seems that no matter how many PFS studies come out they will either be ignored or played down.

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#7

If it makes you feel any better MarkI contacted Khera back in the fall and the Baylor study is still ongoing he told me he had collaborated with the University of Utah genetic department to analyze the data…So I assume its still ongoing and who knows when it completes and when it publishes.

Not much hope on the surface it seems in general for pfs sufferers…I know its hard to accept… We just keep pushing forward…I do believe the awareness has grown greatly about pfs Dr’s discussing it more and more on Twitter etc…Partly due to hims and all the tv ads you see now for hairloss selling finasteride…Compared to 5 years ago it has exploded as more talk of finasteride there seems to be a “common knowledge” of bad side effects and pfs…Back in 2014 when I got murdered by a dermatologist it was un heard of…

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#8

Years ago I expected there would be a game changer PFS study that would prove all the doubters of PFS wrong.

But it looks like that will never happen unless billions of dollars can be put into PFS research.

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#9

Yes, I’ve been a long time lurker as well and I also get the feeling this place has really stagnated. Hopefully something will change to the better.

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#10

I am hoping this will change as the condition receives growing recognition and the stigma of PFS patients being people who simply don’t lift enough, don’t eat right, had a pre-existing condition, or are caught in a perpetual psychological disorder is lifted.

This ridiculous notion has been pervasive for too long and doesn’t come close to explaining it. When it is recognized that this was done to us and not something we did to ourselves, it will change.

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#11

First I appreciate the outlet and efforts, none of this is meant to be disrespectful but maybe more so thought provoking.
Let me just go down the line.
^What do you mean by this?
What if your theory is wrong?
Not too long ago both you and @awor dropped a self written research paper without barely saying a word. There was little to no follow-up even months later. There still hasnt been any.
What if the AR gene is not overexpressed?
There is overwhelming research and studies to say that it shouldnt be.
Do you know there is no standardized testing to interpret AR expression and that theres always a chance results could be misinterpreted, or collected at a point-in-time that doesnt reflect a possible final or normal resting state?

Awor had said that milk thistle had made his condition much worse then Finasteride ever did, so in this case we are not really talking about a specific drug issue. We are not talking about Finasteride, we are talking about a condition he was predisposed to.
We are talking about a life issue, not a drug one, it was only exposed by the drug. its almost the same as spinning the wheel with covid, a person just doesnt know.

He was also of the mindset to decrease AR sensitivity by taking types of antiandrogens to restore ar sensitivity? That makes sense?
What if hes been wrong all these years? Are his peers still hanging around?
Most of you are pretty new here including yourself.
You wrote an entire research paper based on taking one pill and a couple years experience?
To me thats a little out there, and yes I am aware how one pill could have a long lasting impact.
If I had serious problems from taking one pill of Fin, I would be looking at myself first the drug second. Meaning there must be an underlying issue as to why I was so susceptible when the majority of the population isnt.

So we are going to try to look at the entire human genome,you have to check, but what if theres nothing there?
What if thats not it? Are people prepared to be wrong about some thoughts that have been held onto for decades?
Then what?
Im not trying to be offensive, but just looking at this from a critical point of view.
All im saying is give yourself and others every chance possible.

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#12

I am just so thankful that we were blessed to have mew, awor and axo help us at all. That paper was an incredible amount of work. Probably something like 4 years of full time work from several guys. All the sacrifices made to produce it must have been tremendous. We will be lucky if anyone ever does something like that for us again. I don’t think people here have much of a sense at all how much work writing a paper like that is, and all for basically nothing in return.

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#13

sad to hear about tzinkman, please send him my best regards

he was really stoic and i had no idea he was battling brutal symptoms

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#14

I agree. My last post was more on the aggressive side then the sensitive one. Thats alot of time and effort. Its all appreciated.
At the end of the day it is still a theory though, whether its on paper or not.

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#15

The neutrality of a tentative WGS, which is currently one of the primary research objectives along with elucidating the complete symptomatic profile, was stressed in this update announcement.

Neither of these objectives concern testing a specific hypothesis.

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#16

Hello Dubya,

What do you expect from WGS ? Any genetic association or something else ?

Do you consider a proteomic approach ?
Might be less expensive than WGS and give multiple endpoints for diagnosis. or not ?
What are pros and cons between both ? Are they both neutral ?
Just curious.

Thank you,

#17

One of the things that I think is worth noting is that Axo and Awor are regular people. Neither of them are scientists, they did the research and the reading, referencing and everything else that needed to be done. They did it without having people pay for their time, without paid resources or facilities. Anyone could do this if they put the time and effort in. Nobody does.

I’m not attacking anyone when I say this is significantly more work than dreaming a theory up and posting the abstract from someone else’s work on this forum.

I’d welcome anyone doing serious research into this, but if you’re going to do it, do it and do it properly. Prove that you’ve got the right idea. Get your paper published. Just tearing down other people’s commendable work, doesn’t help.

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#18

I could write a book at this point, (and I probably have with all my posts between here and acne.org) it doesn’t further validate my thoughts.
Nothing is set in stone in my mind. I’m prepared to be wrong about some things everyday.
Are others?

Theories can turn into obsessions that can create a sort of tunnel vision, where sometimes the simplest thoughts can be missed or overlooked.
Ive seen it on acne.org, except its with vitamin a, not antiandrogens.
Any Game of Thrones fans?
Little finger had alot of good lines,
“Assume your wrong before your right so it doesn’t surprise you when you are and you can keep moving”
or something like that.
I look at some of Mews old posts, and it almost reminds me of some of my posts, or the way I go about things. I just happen to come from a different drug and website.
Also believe me I dont think too highly of myself, (pretension is a word that comes to mind sometimes when you start hanging out on some of these forums)
but I know I might be one of the better chances people have on here on a patient level, and its probably never going to come around again in your lifetime.

I do think at some point you almost have to make a bet or a gamble as to what might be right going forward, kind of like the research paper. Something that can be presented to say “hey we think this could be it.”
Its going to have to get someones attention.

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#19

This feels very true. The risk of long-lasting or permanent side effects seems known to more and more doctors, and I’m also seeing it discussed among non-PFSers on online forums. Discussion has shifted from “does it exist” to “how bad is it really, how many are affected, are there pre-existing conditions that make you vulnerable”.

Yes, agreed. Heroic effort. (And imagine doing it while suffering cognitive symptoms… unreal.) That paper was illuminating and compelling. It’s the most cutting edge description of PFS we have.

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#20

Well said @Greek. Not many on here me included would have been able to put this amount of time and effort in. It’s worth noting that this is done whilst suffering from PFS. Its more than commendable/admirable, deserving of gratitude and recognition from all.
Getting through each day is a task in itself for me. One thought, could we not recruit someone full time to push forward the agenda. I for one would certainly contribute financially towards that end. We would see things move at greater speed in terms of pfs recognition and ultimately funding for a treatment. Just a thought.

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#21

@slavoushka

Yes. I understand WGS as a basic and comprehensive pharmacogenomic method that could likely lead to a partial mechanistic explanation.

Also, from my interpretation of what I have read on the topics, its more efficient to “drill-up” through the epigenome, transcriptome, and proteome, than it is to drill-down because the genome is not nearly as dynamic as the other “-omics” domains. Their variable nature within an individual and interactions among these higher-level domains introduces another huge layer of complication.

It didn’t appear to be feasible to begin with a “proteome-wide” association analysis when I was heavy into it. It was something performed on a particular set (sometimes a very large set) of proteins to test a hypothesis. That was a few years ago and may have changed.

As axo stated, 2 leading experts in molecular biology independently recommended starting with WGS after consideration of the predicament. Undertaking such a research project will ultimately be left in the hands of an expert scientist.

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#22

Isn’t Baylor performing WGS?

#23

It seems as though affordable WGS are on the horizon. Genomics stocks have been one of the best performing industries this year as the future of genomics / CRISPR seems quite promising.

Here’s an excerpt from Invitae’s 10k:

"Ability to expand our genetic content

Our focus on reducing the average cost per test will have a countervailing force — increasing the number of tests we offer and the content of each test. We intend to continue to expand our test menus by steadily releasing additional genetic content for the same or lower prices per test, ultimately leading to affordable whole genome services. The breadth and flexibility of our offering will be a critical factor in our ability to address new markets, including internationally, for genetic testing services. Both of these, in conjunction with our continued focus on strategic partnerships, will be important to our ability to continue to grow the volume of billable tests we deliver."

#24

Never heard of this. Over the years, there have been some mentions on this forum of a “genetic study” at Baylor in reference to the gene expression analysis.

#25

Un grand Merci Axolotl and to all your team for your work, your investment, … ! In spite of this particular year and the fact that many had the impression that nothing was moving forward, we have had many scientific publications and we can see that the look of the Authorities, of the doctors change enormously, so 2021 should reserve some nice surprises. Take a well deserved rest, well done to all of you, Sylviane.

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