follicept - what's this?

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  • serenemoon
    Senior Member
    • Jan 2014
    • 210

    Originally posted by Arashi
    Why would you want that ? If it doesn't work for person A, doesn't it for person B ? Wouldn't it make much more sense to test it on 20 people instead of just one ? What's the statistical significance of just 1 test ? I'd say, do the lab tests to make sure it's not toxic etc, so it's legal to sell and then ship it out right away to 20 forum members we select. Wouldn't that be the best for everybody ? Both for us as for them ?
    "In pursuit of that, we will be doing a convenience sample asap on a handful of people, not much different than a backwoods experiment- "Hey Jimbo, 'mere. Try this crap out! I done made a concoction". We will show you those results as a courtesy. Those results will be as rigorously and consistently reported as they can be, but understand skepticism still at that point.

    The results of that less rigorous (only because they are not randomized, blinded, or placebo controlled), convenience sample will tell us if it seems to be working or not, in very generous terms, and if it's worth spending a ton of time and effort and money to go forward with a larger trial.

    This larger trial will be randomized, double-blind, placebo controlled, IRB approved, and statistically significant, and will yield data that we can publish in peer-reviewed journals. In other words, good science. We may or may not launch Indiegogo before or during this trial, just depending on what we are seeing. If I have said it once, I have said it a thousand times: scientific integrity is paramount, and we will not take your money until convinced it will be effects. Trust me, our standard of evidence is higher than yours. " - Devon.

    I am sure if they are going to send out samples to BTT peeps, it will be during the larger trial phase. Don't worry, it won't depend on just Devon's hair. Even the initial "convenience trial" will have a few people in addition to Devon.

    Comment

    • FrenchNewbie
      Member
      • Apr 2015
      • 57

      If the product works on the 20 persons selected by Follicept and there are really no side effects (FDA control was made, insignificant dose and a safe vector), i think it will be judicious to start with all people who wants without limit (or output limit). Then, a lot of people will test it (if they want and taking their responsability about risks).

      Why testing with people of forum? They could be pessimistic or enthousiastic and create a bias. Photos will not have the same quality. Some will take photos with smartphone, others will crop it oddly. My point of view is that it's not a good idea.

      Comment

      • serenemoon
        Senior Member
        • Jan 2014
        • 210

        Originally posted by FrenchNewbie
        If the product works on the 20 persons selected by Follicept and there are really no side effects (FDA control was made, insignificant dose and a safe vector), i think it will be judicious to start with all people who wants without limit (or output limit). Then, a lot of people will test it (if they want and taking their responsability about risks).

        Why testing with people of forum? They could be pessimistic or enthousiastic and create a bias. Photos will not have the same quality. Some will take photos with smartphone, others will crop it oddly. My point of view is that it's not a good idea.
        Don't worry, forum testing will be just a side trial. No matter what, Follicept is running a legitimate trial with the people that they selected. I say, let the forum trials happen, who cares. Let those 20 people from BTT be enthusiastic or pessmimistic and take different quality photos, I know you and I will be paying more attention to legitimate trials anyway.

        Comment

        • FrenchNewbie
          Member
          • Apr 2015
          • 57

          I understand your point of view. But the real problem is a possible bad buzz from these possible bias. If there are too much good results, some people will think it's weird and could create a conspiracy theory. For instance: old members well paid by Follicept to give false results (we can see that theories on french forums about some grafters... there are no proof). As we can see on this topic, we can't control social interactions, cause people are not neutral (like me, like Arashi, like all). Reactions on forums are not under control.

          Other example: If unfortunately a bad news arrives during the trial with forumers (a natural death of a forumer who was in poor health -Follicept can't know health of people with distances-) it will be a terrible bad buzz for them and for us. The family will think that it was this product. They will attack in justice... and we'll never see Follicept. It is a possibility. It could arrive.

          Comment

          • serenemoon
            Senior Member
            • Jan 2014
            • 210

            Originally posted by FrenchNewbie
            I understand your point of view. But the real problem is a possible bad buzz from these possible bias. If there are too much good results, some people will think it's weird and could create a conspiracy theory. For instance: old members well paid by Follicept to give false results (we can see that theories on french forums about some grafters... there are no proof). As we can see on this topic, we can't control social interactions, cause people are not neutral (like me, like Arashi, like all). Reactions on forums are not under control.

            Other example: If unfortunately a bad news arrives during the trial with forumers (a natural death of a forumer who was in poor health -Follicept can't know health of people with distances-) it will be a terrible bad buzz for them and for us. The family will think that it was this product. They will attack in justice... and we'll never see Follicept. It is a possibility. It could arrive.
            About things like deaths/adverse side effects that may not even be related Follicept, and thus causing Follicept harm - I see what you mean. That could be an issue with anyone even with the legitimate trials, but I understand you. We will see what Dr. Hsu decides. He is a brilliant guy, I am sure he will take all of this into consideration.

            As for there possibly being too good of results from forum members and people creating conspiracy theories because of that - I suppose anything is possible, but hopefully they will pick long standing members who are truly trusted. And if someone comes up with the theory that 20 forum members who have been here for ages were paid by Follicept to show good results,well, I promise you that most people would find that ridiculous. I would personally think someone is a bit mentally ill if they kept making that accusation. I think overall it will be okay. I totally get your idea about pointless negative buzz, but sadly, we can't control everything. What is meant to be, will be I suppose. We will wait and see. Like Devon said, they will do what is right by them and science, and let the chips fall where they may.

            Comment

            • Arashi
              Senior Member
              • Aug 2012
              • 3888

              Originally posted by serenemoon
              "In pursuit of that, we will be doing a convenience sample asap on a handful of people, not much different than a backwoods experiment- "Hey Jimbo, 'mere. Try this crap out! I done made a concoction". We will show you those results as a courtesy. Those results will be as rigorously and consistently reported as they can be, but understand skepticism still at that point.

              The results of that less rigorous (only because they are not randomized, blinded, or placebo controlled), convenience sample will tell us if it seems to be working or not, in very generous terms, and if it's worth spending a ton of time and effort and money to go forward with a larger trial.

              This larger trial will be randomized, double-blind, placebo controlled, IRB approved, and statistically significant, and will yield data that we can publish in peer-reviewed journals. In other words, good science. We may or may not launch Indiegogo before or during this trial, just depending on what we are seeing. If I have said it once, I have said it a thousand times: scientific integrity is paramount, and we will not take your money until convinced it will be effects. Trust me, our standard of evidence is higher than yours. " - Devon.

              I am sure if they are going to send out samples to BTT peeps, it will be during the larger trial phase. Don't worry, it won't depend on just Devon's hair. Even the initial "convenience trial" will have a few people in addition to Devon.
              IRB approved trial: they won't check if it actually works. They check methodology etc but there it stops. In fact, its main goal is to protect the test persons (make sure they're safe, getting paid etc). And peer-reviewed journals, that's been all layed out before, these guys dont even care if it's real or not. They just check methodology and if it's relevant to them.

              I don't care about all that. And anyone with a critical mind should neither. A test among 20 members is MUCh more reliable. No way faking that !

              And no, these are not 'conspiracy theories' or whatever. Just what we've seen before ! The peer reviewed scientific journal that published Gho's article said it themselves ! They did NOT verify any of the claims made in the article.

              Comment

              • diffuseloser
                Senior Member
                • Sep 2014
                • 238

                I agree FrenchNewbie. I don't think it would be in Follicepts best interest to conduct themselves in this manner. I do get where Arashi and co. are coming from but I don't think it necessary to do this. I'm content letting them do their own trials and I'm pretty sure they are straight shooters, so I don't need any convincing. I'll just wait to see their results and if it looks promising, I will buy the product myself and test it myself with no expectations. If it doesn't work for me, I'm not gonna lose any sleep over it. We will see what happens either way.

                Comment

                • serenemoon
                  Senior Member
                  • Jan 2014
                  • 210

                  Originally posted by Arashi
                  IRB approved trial: they won't check if it actually works. They check methodology etc but there it stops. In fact, its main goal is to protect the test persons (make sure they're safe, getting paid etc). And peer-reviewed journals, that's been all layed out before, these guys dont even care if it's real or not. They just check methodology and if it's relevant to them.

                  I don't care about all that. And anyone with a critical mind should neither. A test among 20 members is MUCh more reliable. No way faking that !

                  And no, these are not 'conspiracy theories' or whatever. Just what we've seen before ! The peer reviewed scientific journal that published Gho's article said it themselves ! They did NOT verify any of the claims made in the article.
                  You misunderstand. If you are talking about how they won't check for results in the actual IRB trial, that is not true. In addition to safety, they have admitted that they will test for efficacy. Efficacy is what they will test for. THey will see if the product is effective. They will make sure if it works. Software will be used to analyze hair counts. They are going to see if the product actually grows hair. I said it multiple ways, hopefully one of them registers.

                  I sincerely hope you get your BTT trial, Arashi. I am not against it. I posted Devon's section to let you know how the trials will progress on their side, since you were worried that it will stop at Devon's hair if it does not work for him.

                  The conspiracy theories that FrenchNewbie is talking about are different from the ones you mention. He is worried if the forum trials results are too good, people will accuse Follicept of paying those 20 forum members. Different from what you mentioned.

                  Comment

                  • FrenchNewbie
                    Member
                    • Apr 2015
                    • 57

                    Devon said us that it could be all or nothing with results.

                    But it's not the only problem. It could be very risky for Follicept. Arashi spoke about the death of a forumer who tried a product from a dr (i don't remember who it was). You can't say that it was this product who killed him before an autopsy or investigations. Or, it could be a person who have a cancer after taking Follicept. If this unfortunatelly arrives it will kill our hopes about this product.

                    I don't know if this product will work, but i can say one thing. Yesterday and today, i was happy. I had a big smile. IGF-1 (for me) could be a real hope. Please see the captures took by Noisette (he is Ryuteam on Doctissimo): http://club.doctissimo.fr/ryuteam/photo/ . He asked some specialists via Linkedin about Follicept and IGF-1 administrated by a gel. It seems that the way took by Follicept is a good way.

                    Ps: Excuse me one more time for my poor english. I can't explain my ideas as i can do with my mother thongue. You could think that i'm a silly guy with my ideas under explained.

                    Comment

                    • serenemoon
                      Senior Member
                      • Jan 2014
                      • 210

                      Originally posted by FrenchNewbie
                      Devon said us that it could be all or nothing with results.

                      But it's not the only problem. It could be very risky for Follicept. Arashi spoke about the death of a forumer who tried a product from a dr (i don't remember who it was). You can't say that it was this product who killed him before an autopsy or investigations. Or, it could be a person who have a cancer after taking Follicept. If this unfortunatelly arrives it will kill our hopes about this product.

                      I don't know if this product will work, but i can say one thing. Yesterday and today, i was happy. I had a big smile. IGF-1 (for me) could be a real hope. Please see the captures took by Noisette (he is Ryuteam on Doctissimo): http://club.doctissimo.fr/ryuteam/photo/ . He asked some specialists via Linkedin about Follicept and IGF-1 administrated by a gel. It seems that the way took by Follicept is a good way.

                      Ps: Excuse me one more time for my poor english. I can't explain my ideas as i can do with my mother thongue. You could think that i'm a silly guy with my ideas under explained.
                      Your English is great, no worries! My French on the other hand, hah! Also you make valid points, I see where you are coming from. Also, thanks for the link. Nice to see other professionals with actual degrees seeing so much potential here and acknowledging that igf1 does I'm fact grow hair. Thanks to Noisette too 😊

                      Comment

                      • Swooping
                        Senior Member
                        • May 2014
                        • 794

                        Originally posted by serenemoon
                        Your English is great, no worries! My French on the other hand, hah! Also you make valid points, I see where you are coming from. Also, thanks for the link. Nice to see other professionals with actual degrees seeing so much potential here and acknowledging that igf1 does I'm fact grow hair. Thanks to Noisette too ��
                        Where do you see anyone doing that? Aside from a young guy who has probably no expertise in hair follicle biology and co-authored with Dr. Hsu himself on some papers? Link direct picture & proof please.

                        Comment

                        • Clion1995
                          Member
                          • Jan 2015
                          • 37

                          FrenchNewbie great find. I agree with Serenemoon that it's nice to see professionals with graduate degrees commenting on IGF-1. I love how they refer to Dr. Hsu as Stephen. I can't stand to watch people (no names here) try to attack a product that they have no idea how it works. It's just plain ignorant and the majority of them think they're educated on the matter but haven't put their life's work into curing diseases.

                          Comment

                          • serenemoon
                            Senior Member
                            • Jan 2014
                            • 210

                            Originally posted by Swooping
                            Where do you see anyone doing that? Aside from a young guy who has probably no expertise in hair follicle biology and co-authored with Dr. Hsu himself on some papers? Link direct picture & proof please.
                            Everyone who responded with an opinion acknowledged that there is potential. Dr. Tausif Alam specially said it is a growth promoter.

                            Comment

                            • Clion1995
                              Member
                              • Jan 2015
                              • 37

                              Swooping, please post a picture of your graduate degree and a link to your publications proving your knowledge on alopecia.Link direct picture & proof please.

                              Comment

                              • serenemoon
                                Senior Member
                                • Jan 2014
                                • 210

                                Originally posted by Clion1995
                                Swooping, please post a picture of your graduate degree and a link to your publications proving your knowledge on alopecia.Link direct picture & proof please.
                                +1

                                Comment

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