Calling for Study Participants for First Molecular Level PFS Study EVER ********************

Science PFS Research
#81

We have now obtained a biopsy of 10 patients and the scientists will shortly begin with the first experiment. Before going on, I would like to once more thank everyone involved so far:

Many, many thanks to the brave men which had the biopsy taken and took the time and cost to travel: Oh Bloody Hell, Mario, Gargoyle, 40, Italy Side Effect, James7786, Claro and another guy, which the scientists knew directly. Mew and myself also had a biopsy taken. Again, special thanks to 40 who did a fantastic job in the background and played a pivotal role in helping make this happen. The scientists were very impressed with our organization and our ability to pull this off. This was only possible thanks to the uncomplicated help of everyone involved and gives us the credibility of being a good, reliable partner as we move forward.

The hypothesis we will be testing could potentially require two separate experiments to validate. The first experiment, which we will be starting with shortly, is much simpler and cheaper to perform. So let’s keep our fingers crossed that the first experiment will already reveal what’s going on. If we succeed with this first shot, we will have results by mid September. Otherwise, it will take longer and could require additional funding. We will cross that bridge when we get there.

I would like to clarify two things, so everyone better understands what we are doing and has the right level of expectations.

First of all, I would like to make sure that everyone understands what we are going after. The working hypothesis is, that there is a common root cause to this whole mess. There is one driving factor, which causes all the side effects which we know of and explains why:

  • many of us crash after quitting the drug
  • supplementing androgens makes some/many men feel worse
  • exercise makes some men feel worse
  • orgasm can worsen symptoms with some men
  • some men waste muscle
  • many of us have an increase in body fat / changes in fat distribution, no matter what the androgen levels are
  • some men have penile shrinkage
  • some men have prostate problems
  • some men have an increase in hair loss and body hair growth after this problem (while others do not)
  • some men are getting neurological problems such as depression, anxiety, memory failure, slurred speech, muscle twitches, insomnia and other cognitive difficulties
  • we all seem to get the same problem, regardless of the androgen ablating substance used (finasteride, dutasteride, sp, isotretinoin, SSRI, other anti-androgens)
  • also woman get this problem
  • we don’t all have the symptom profile (variation in side effects, some only neurological, others only sexual, etc.)
  • symptoms can fluctuate over time
  • many of us have hypogonadal T/LH values
  • many of us have low 3a-diol-G
  • many of us have low vitamin D3 and other hormonal imbalances
  • etc.

We have a clear target which is capable of explaining this. The hypothesis for this target is based on known molecular behavior, seems plausible to the involved scientists, and that is what we are going after. If we succeed at this, we will have identified the key driving element behind this problem. What we will not have figured out yet, is why it has become persistent. The answer to that is more complicated.

Second of all, if we succeed, will we have a therapy? If our hypothesis is verified, we will have a potential therapeutic target. There are substances which already target what we are looking at. If they will work, and not have other inacceptable side effects, is another question. It will require further experimenting in oder to find that out. We may need to go one step further downstream, to the factor controlling persistency. Figuring that out, and finding therapeutic targets for it, will not be a short term undertaking.

No matter what the outcome, and I have said this many times before, we must develop a better understanding of this problem in order to have a better chance at managing it someday. This will be a long, stony, road. But if we don’t start moving down that road, we will stay put where we are today.

Again, thanks for everyone’s support, patience and trust.

1 Like
#82

is it good or bad if AR expression is normal?

#83

Both, I think. If its is normal, then we avoid something mega like this en.wikipedia.org/wiki/Kennedy_disease.

If its abnormal (which sounds bad), then we have found out the root cause and start looking for treatment and finally get off the merry-go-round of theories.

#84

if AR is not normal as in androgen receptors are no longer working isint this a perment thing with currently no known cure. im hoping they are normal. in response to Awor message about a second test needing more money what sort of money is involved. i will gladly spend a lot if money on this. i also will put myself forward for any future tests that i meet the criteria for. i would have done this one but i was cercumstised.

#85

If a second test is necessary in order to find out what is going on I am gladly spending/donating money for it. We could also think of a funds where fellow sufferers could put money in so that we can finance the testing. I would also put myself available for further testing.
Thanks again to all brave men involved.

#86

Maybe you should hope they are not normal. With regard to the outcome of the study it’s a “good” thing if AR gene is under expressed. That’s the main tenent of his theory.

We all hope it isn’t a “permanent” situtation. As Awor said, IF the problem along the pathway is where they suspect then they have some things to try in mind evidently. Let’s hope it is exactly where they are thinking and what they have in mind to target it works for us all. As he says, alot of “ifs” have go our way. Hope for the best, prepare for a long road and save up what you can for future unfunded research which I’d bet is almost a certainty.

#87

Don’t hope that. If our hypothesis doesn’t verify, then we’re up sh** creek, because there will be no alternative hypothesis which even comes close to explaining everything as well as the current one does. Don’t worry about the when’s and if’s. Just hope that we find something.

As much as I would love to get into more detail, I can’t at the moment. I promise you that we will have some news latest in the second half of September. Until then, let’s just all get on with our lives and enjoy the summer as much as possible. Once we have some results, and I am allowed to communicate them, I will start a new thread or even a separate website which will explain this problem in great detail at the molecular level and I will take every question you care to ask.

#88

Hi Awor. Is this a hypotheses that the actual researchers/Docs also believe in or is it that they are researching just upon request from yourself et al. Thanks.

#89

I supplied much of the theoretical basis for this current investigation. The basic hypothesis I originally formulated makes a lot of sense to them and the scientists fully stand behind it. They find the problem fascinating from a basic science point of view (as said before, this problem likely has relevance far beyond PFS). Also, the involved institutions are providing the money to fund this research. They wouldn’t do this, if they felt that the approach didn’t make sense.

At the end of the day, this is how real life science works. You can’t ask open ended questions in science. You must devise a hypothesis and a clear methodology to test it. The answer to this test is either 1 or 0, true or false. Based on the results of this answer, you can devise the next hypothesis, and so on. That’s the path we are moving on.

#90

Okay, thank you .

#91

just a question
if this hypothesis is confirmed, do we have a test to discriminate pfs cases from others sides like cases?
there is lot of people in doubt about their conditions…

could this test be performed all over US and Europe?

Thx for ur great work

#92

May I just say it was a real pleasure to meet Awor, Mew and 40. If the time would have permitted, I would have gladly stayed a few more days to hang out.

Awor, may this small step be the beginning of the end for all of us. Thank you!

#93

What problem?

#94

Penile shrinkage and prostate problems … get a clue oscar, loss of libido and dry vagina.

#95

I suppose we are talking about Isotretinoin? I personally feel it is a bit of a stretch to try to link the side effects of one drug which occur to women to the side effects of Finasteride and its effects on men.

I know why Awor wants to do this but i think it will only confuse things down the line. We just dont know if we are talking about the ‘same’ problem. For example, its not unreasonable to suggest that dryness is caused by isotretinoin’s effects on sebaceous glands in the vagina.

#96

Yeah, let’s concentrate on finasteride first and foremost.

Proposing that accutane and fin damage people by identical mechanisms could prove obstructive to our own research. In practice we’re talking about finasteride anyway given that is who have given the samples so it’s not a problem.

#97

I’m wondering this too, this alone would be huge, to actually have the ability to test for and prove we have a condition that was directly caused by propecia/other 5ar inhibitors…

#98

oh yes
i like to hear awor opinion soon.

#99

Is it safe to say that this study will 100% prove or disprove the AR/epigenetics theory ??

Also a big thank you to awor for putting this together, I am sure it took ass loads of time and persistence…

#100

The experiment that we are currently performing with skin samples (cells) will reveal, if the hypothesis is correct, the nature of this problem. Again, if verified, the “marker” that we are looking at will be very clear cut and will provide a clear evaluation method for this syndrome at a scientific level. However, the current experiment design is invasive and as such will never be used for mainstream diagnosis. But it will allow us to correlate further similar problems such as PSSD and others, to prove that these are in fact the same problem. We already have plans in this direction.

The next wave of research that will be launched shortly will look into the question which you asked, namely how this problem (or rather our predisposition therefore) can be clearly determined based on genetic information. The material we will need for this will only be saliva or serum, so developing a routine test will be possible. If we are successful at this, a world wide available commercial test could conceivably be produced by a diagnostics company.

If either of these results will be useful for litigation or not is a very technical question, which only a specialized lawyer could answer.