Baylor study delayed again

[Andrew35]

Given the raft of negativity towards the Baylor study it seemed we didn’t have much to lose. However they probably don’t want to hear our awful struggles.

I don’t know about pushing other research aside, we just want researchers to do what was asked of them or what is reasonable under the circumstances.

A web page containing our anonymous stories along with an explanation of PFS could be used to generate interest from journalists and documentary filmmakers etc.
It would provide a body of evidence to send out to influential people who could help us or link this on other forums.

If we want to create more awareness and add a human element then it’s a possibility.

[pvdl]

@Northern_Star

However, it is unreasonable to expect that these researchers commit their lives to save us.

Is it unreasonable to expect a scientist to complete a study he received funding for within a reasonable timeframe?

I think the only discussion that we can have is whether 6 years is still a reasonable timeframe for the completion of this specific study. Some like axo claim it is.

[Northern_Star]

@pvdl

Is it unreasonable to expect a scientist to complete a study he received funding for within a reasonable timeframe?

I think the only discussion that we can have is whether 6 years is still a reasonable timeframe for the completion of this specific study. Some like axo claim it is.

I don’t think it is unreasonable. I am answering those who think the researchers should do all in their power to help us as if their own sons were affected (irregardless of the fact that we have many people here who are affected themselves and still cannot be bothered to do anything). The researchers don’t owe us anything.

Obviously, researchers should do their jobs in a reasonable time frame. However, I doubt many here have any experience in how long such a study takes in general and the circumstances (funding, complications) of this study in particular. So I don’t see any base to judge what a reasonable time frame is.

Overall, I think we are all unhappy that progress is so slow. Hence, the attempts to broaden the scope of this condition to attract more interest and funding, which would give us more leverage. All the insults against the researcher in question, the conspiracy theories and baseless speculations, however, do not accomplish anything positive.

[pvdl]

@Northern_Star

The researchers don’t owe us anything.

They are not obliged to do anything for us if they are not interested. However, if they accept funding for a PFS-study it is reasonable to demand that they complete it within a normal timeframe. For many, the rub is that they accept the money and then either take a very long time to complete the study or design a study that doesn’t acknowledge the entire set of symptom at the outset, which then often leads to the conclusion that it is all “neurological” or even worse merely “psychological”.

[Northern_Star]

I did not say anything to the contrary, so I am not sure why you are raising these points with me. I understand that this is frustrating, hence the efforts to gain more leverage.

[Greek]

A quick heads up for anyone who wants to take part in the sort of action mentioned earlier in the thread.

Are you interested in sharing your story for our Youtube project?

Hi guys, Some of the moderators have recently formed a content team for our social media outreach projects. Youtube content is in the planning stage, and we would like to use the platform to help those who are interested in telling their stories share how PFS has affected their lives. Please give thought to any implications with regards to your own privacy, and don’t feel pressured to contribute. This is purely voluntary, and as the benefit of this project is to humanise the problem and bring i…

[Ukguy82]

I got the PFS foundation annual statement today by e-mail. It was very positive and hopefully it will be on the website soon.

It says:

Additionally, our clinical study at Baylor College of Medicine has been completed. As soon as it’s published, we’ll announce the results.

[Mark2012]

I wonder if the foundation know whats in the study ?

[anon90613791]

Just read the statement. A big thank you to Melcangi. I recently visited a large and famous hospital in the capital of India, and not one doctor was aware of the side effects of finasteride or isotretinoin, and the endocrinologist dismissed my symptoms as solely due to vitamin D deficiency. I pray to see Baylor’s results soon enough.

[pvdl]

@Ukguy82

Additionally, our clinical study at Baylor College of Medicine has been completed. As soon as it’s published, we’ll announce the results.

Seems like @MOONCHILD might be wrong with his statements that the study will come in two parts. Otherwise the above statement would be false or at least misleading.

[MOONCHILD]

The study is completed yes it is true, but the part 1, if you want to clear doubt make an appointment with Khera.

[pvdl]

In this case it’s misleading to state that the clincal study at Baylor has been completed. It hasn’t, only a part of it has been completed, if what you are saying is true.

[lakehouse]

can we all stfu now and just wait instead of posting another shitty assumption cycle

[Greek]

Yes, 1000 times this.

Please.

[kan]

Maybe instead of starting again the endless cycle of quotes and rumours we could start preparing for preventing the mistakes that have made this study interminable from happening again.

For example: One of the reasons that this study took so much time is because the recruitment of the participants took more than a year, if I remember well. A lot of time was lost just trying to find a small number of people to participate in the study.

Although it is also true that the contact e-mails from the baylor study didn’t answer many of the e-mails of potential participants and this didn’t help either, the main reason why it took so long to recruit all the participants is because it was difficult to find people willing to take part in the study.

One of the proposals to avoid this in the future (and speed things up in future studies) is to have a list of people that in case a future big study starts, will be ready to take part in it.

It is certainly not the same to spend 1.5 years in the recruitment than just doing it in one month thanks to a previous selection.

[matys83]

I think that if the test is in two parts, after the possible appearance of the first part, we should organize genetic tests ourselves. We have a survey and genetic testing from 23 andme. So you don’t have to look for partipicants willing to go. But go research immediately.

[matys83]

Of course it’s just a thought. I have no idea if the 23andme genetic test can be used for such tests

[lakehouse]

If you want to help, get people from Facebook ssri and acutane groups to sign up and fill our survey.

That’s the focus.

[vkg1]

Maybe people could also think of other ways of unifying the groups of propecia, ssri, and Accutane sufferers. Basically to do the inverse of divide and conquer. Maybe if the first step in conquering people is to divide them, then the first step in not being conquered is to be unified. Also to diversify our demographic. For example, then reporters interested in problems affecting women might give us an ear. Same for groups interested in children’s issues, etc. we can help those groups with our greater relative progress, much as it may not be great absolutely. Have people thought of changing the name of the web site? I know the admins are too busy to focus on that themselves. Maybe that’s something we have the ability to do ourselves. Anyway, the main thing is for everyone to stop waiting for someone else to do something.

[kan]

Those are two different things. Doing one of them is not incompatible with doing the other. Having enough people to take part in the next studies when they are needed is something that is extremely important.