I tried to participate in this study over 2 years ago and when I met one of the researchers, it seemed very off to me so I never pursued it. I have been malpracticed by Dr. I Goldstein, a doctor that this forum recommended (guy is highly irresponsible and is still being recommended by the forum, so who really wants to help who?). I really hope that members are being safe when participating in these studies, and I will fully support them if they feel that they have been harmed as a result of negligence or irresponsibility from the doctors or researchers that this forum is mentioning. I would also like admins to do the same. Mistakes happen, but irresponsibility, negligence, and intentional lies are different and should be held accountable. I just hope that members are able to find their relief method on time from people they can truly trust and the information they create so that they can pursue happier lives.
HI Kit,
The goal of the POIS doctors list is to let members know about doctors who know about POIS. A physician who knows about POIS can confirm to a patient if he has POIS or not, based on the criteria set by Dr Waldinger. He can also offer some understanding and support, rather than thinking the patient is making up a story. This is far better than meeting with a doctor that has no clue about what POIS is, and has no interest in it, and sends you to a psychiatrist. However, there always has been a warning note at the top of the POIS doctor list stating that those doctors have no established treatment to offer, because nobody knows yet what is the cause of POIS, and there are no recommended treatments for POIS. All POIS treatments that could be offered by the Doctors on this list or any other doctors are EXPERIMENTAL treatments.
POISCenter had never recommended any treatment for POIS, by any of these doctors or other doctors. We only suggest consulting a doctor that already knows about POIS because those doctors take POIS patients seriously and really want to help. However, If anyone accepts to try an experimental POIS treatment offered by any doctor, it this AT THEIR OWN RISK.
So, when you say that it is wrong to have Dr. Goldstein on our list of doctors who know about POIS, what you are saying is that you never read the warning at the top of the thread. You act as if we wrote, " go see any of these doctors, they all have treatments they want to try on POIS sufferers, and we recommend you accept any of these treatments, without any discernment". Sorry, but we never wrote that, quite the opposite. And, one of the rules of POISCenter is to not give any medical advice. All we do is share what works for members, like in the POIS types chart, and from there, other members are free to discuss those methods with their doctors or health professionals.
I am really sorry that this experimental treatment has not been beneficial for you and has caused you problems. However, it is not acceptable to say that we are "highly irresponsible" because the name of Dr. Goldstein is on the POIS Doctors List. He is a Doctor who knows about POIS and is interested in POIS research, but we have no control over his professional activities, his hypothesis on POIS, and the treatments he wants to explore. However, when you contacted me in PM about your bad experience with the procedure called TFESI you had from him, I immediately added a warning under Dr. Goldstein's entry on the POIS Doctors list, and this warning is still there to this day.
This cannot be overstated to all members: there is no established treatment for POIS, so be very, very careful about any treatment offer made by any doctor, even if this doctor is on the POIS Doctors list of POISCenter ! This list is in no way a sponsoring or an endorsement of any treatment they would propose to you, and you have the entire responsibility of evaluating the risks and accepting or not. Do not hesitate to consult with other physicians before taking a decision, of course.
About the upcoming study, I want to make it clear to anybody that would want to enroll in it: it will be an experimental study, to try and find what causes POIS, and what markers can be found in the body and blood of POIS sufferers, among other things. All those members who expect a miracle and a quick fix, like if this study was their last chance in life, would be better not to participate in the study, because their expectations are too high. Also, POIS will have to be triggered at some point in the stud, because, can you study the effect of POIS if there is no POIS ? I hope I made it clear, that those who do not have the guts to go through a study should stay home. The last thing we want is another fragile individual who will cost another 2 years to the POIS community by compromising the 2022 POIS study with an official complaint.
We all have to understand that participating in this upcoming POIS study is an opportunity to help the entire POIS community, and not necessarily a comfortable one, but a highly valuable one. Also, this study is highly regulated by strict rules, and there is an independent board that makes sure these rules are respected by the researchers, throughout all of the steps of the study. This means that everything will be done to ensure the security of the participants, and the maximum comfort for them. But, again, be prepared to be in a POIS state somewhere during the study, otherwise, how could you study POIS ? Also, there may be questions about your sexuality, asked with respect and professionalism of course, but some may feel uncomfortable with this. So, before applying to participate in the POIS 2022 study, be sure that you are willing to accept some level of discomfort. And this will be a great service to the POIS community, as you will help POIS research progress.
