Absolutely agree. While adding his record to our in memoriam page, I saw a video by Quantumfaith the other day that, while sadly quite low quality, did a good job of communicating what he was struggling with personally as a result of saw palmetto extract and the development of his situation.
Not only will this spread awareness of the variable impact on people, but will humanise the issue in a way text cant. Additionally, use of social outreach platforms like youtube will abstract the actual experiences of patients from the sharing of google results and alternative health ideas that often populate the forum due to more regular posting in such topics. As @awor noted ten years ago, the appearance of an alternative heath site is very off-putting to scientists and members of the public in terms of taking the issue seriously. If a new member cites previous awareness of PFS before taking the drug, you will often see them say âI thought [pfs patients] were all just crazyâ or something to that effect. To be clear: This is not an alternative health site, itâs a patient support site, and it shouldnât be assumed everyone reading and using the site is equally interested in what members deem to be theories just because of post volume.
Ideas as to etiology are fine to be shared in line with the guidelines. However, the sheer volume of ideas recently that reflect a very limited awareness of the broad patient experience, specific symptoms and varied reactions, and fifteen years of the actual situation many patients are in has led to myself and the other moderators receiving messages from members who are finding some of the posts overwhelming and reckless, and requesting greater warnings. I can see why and will be taking this into account for the new user guide. We are seeing an increase in members joining up and, before even sharing their experiences in any detail for the benefit of the community/issue, proposing what they believe is a theory or therapy. This is detrimental to the function of the site as a valuable anecdotal record, and as the forum is anonymous we have little idea of the validity of these claims or users. Recently, a user on a PSSD forum took advantage of this to deceive users regarding improvement so he could have them guinea pig for him. This is dire, and unfortunately a great vulnerability of this sadly often desperate situation.
Itâs important to be aware that the variable patient conditions and molecular level findings are suggesting significant complexity, and a priority far above patient guesswork is making clear to the world, accurately, what is actually happening to patients. Your symptoms are something you are the best authority regarding, and we can all help with making this known right now. We donât need to wait for a study to come out for this. Particularly, taking the survey will contribute to powerful standardised data, but additionally this youtube project to share personal stories as a valuable human being - which you are - could be hugely beneficial to our issue.
I sincerely hope that once we put out stories in a structured fashion, it will encourage others to do the same. As for a documentary, weâve discussed this as a team and see it as something with potential, but feel first we need to get people speaking out.
Thanks to all volunteering and @Jaime for his work taking a lead here. Do post and reach out to SBBH if you want to join this effort.