Random questions regarding PFS research

General Discussion
#1

I have got several questions that came to my mind, answers some of you would be welcomed…

  1. PFS Cure X Treatment - how much more realistic is finding a treatment for PFS rather than a cure? I know, for both, a necessary prerequisite is to know, what is PFS and what is wrong with us. But let´s assume once we know, how how much more like is finding at least some treatment rather than a cure?

  2. What would be the best, yet still realistic thing, that could REALISTICALLY happen in the near future (few months - few years), that would mean a huge step in our effort in finding what PFS is… (So we have something tangible to cheer/hope for (except part 2 of Baylor study).

  3. How much Covid and the current situation regarding pandemic is holding back our efforts in terms of getting funding, moving forward with research, getting attention from research biochemisty facilities?

  4. Which, at first sight, small things, could make a big difference for us and what could that difference be? E.g.1) If we suddenly had 700 filled up surveys, would that make any significant difference? E.g. 2) If we managed to raise every year 50.000 dollars, could that change something?

Thank you for any, at least a little thought-out, answers.

I think, that it is just sad and hard to understand, that the most attention on this forum is on fake, dubious recovery stories.

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#2

  1. We will know once we know more about what is wrong with us. It’s impossible to answer. As a general principle, I’d say treatment is always more likely than a cure. But really, it does not matter. We really still need to do some very basic science to understand this condition better irrespective of the answer to this question.

  2. We are working on making a whole genome sequencing study possible. This is not unrealistic in the next year or two, but also not a foregone conclusion as it will require resources that are beyond our means so far. We will see.

  3. This can’t be quantified, but it is holding us back. Some promising contacts went quiet due to the pandemic. But we hope to reestablish contact, once the awareness projects have been launched.

  4. More surveys are nice, especially for Isotretinoin. But realistically, after a certain point the relative numbers do not change in a meaningful way anymore. Money is always scarce, so it is definitely more important.

We all want to make progress. Unfortunately, our resources are very scarce. There is still limited awareness and appreciation of this condition among scientists, medical practitioners and the public, and we have little money as well as manpower for our projects. That’s why we have to do one thing at a time. Currently, we are focusing on our awareness projects, which we hope to launch by the end of this month. People can still contribute to those projects (see: Written stories for awareness). Once this is done, we will focus increasingly on making research happen and, obviously, we hope that the awareness projects will help us to do that.

In the meantime, I can only ask everyone to participate in our awareness projects (see above), report their symptoms to their local authorities (https://www.propeciahelp.com/report-your-propecia-side-effects-to-drug-regulatory-agencies/), take the survey (Post-Drug Syndrome Survey FAQ. Survey NOW LIVE - Please Participate) and set aside money for future research (e.g. setting aside a monthly amount on a separate account). Of course, if anyone can pledge significant amounts, please contact the staff directly.

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