I read the “recovery stories” over and over again. Some claim to have been cured by antibiotics, others crash on them. Some take antiandrogenic substances, others take androgenic ones, and still others crash on both. People literally try everything, risky meds or drugs, and don’t notice anything, while others heal on herbs alone. Still others go back on antidepressants and feel restored. Yet another injects someone else’s shit up his ass (fecal transplant). And then there is the small minority of people who just live as healthy as possible and let time do it’s thing (lol).
None of this makes any sense. The more I read these stories, the more ridiculous the whole thing seems. There are umpteen possibilities of what could have happened to these people. Some never had PSSD/PFS but mental problems, which would explain why some feel better on antidepressants again. How many were mild cases that would have recovered naturally anyway and think a specific substance did it? Who distributes an online store and just wants to make money with sick, desperate people? And finally, the people who come up with a theory, look for a suitable drug/herb and use others as guinea pigs by claiming to have been cured by it. So I would say that at least 50% of these cases are simply bullshit.
For years people here have been making up all kinds of theories, trying the same things over and over again and not really getting forward. The same with research, studies so far have only been symptom summaries and at best a few more theories. The only thing that makes sense here is that the people with the hard, physical symptoms like me are the long term cases. 5, 10, 15, 20+ years pass… Always the same names in the forums and all the people who don’t come online anymore because they have given up. That’s it.
I’ve give up and still come here…But my body is ruined and my health…I know it’s never gonna be as before…6 plus years now.
Yes, there is a lot of nonsense here.
One of the things I thought about a long time ago was “what can this forum offer people?” For me, one of the moderators, I maybe read a bit more than some people, and I maybe think a little more about what we can and can’t achieve here.
And the best we can offer is a future way out. But unfortunately, we don’t have all the pieces in place yet. And even more unfortunately, we need people to help us get there.
People come here for answers, hope and ultimately some kind of way out. That’s why they’re here. And really we can’t offer a lot of what people want right now. Because we don’t have a way out. We’d have used it ourselves if we could have.
So we end up with people trying to make sense of something they can’t understand. Your doctor doesn’t understand it. It’s not in the text book yet. This is terrifying. And that’s kind of where all the ideas and theories come from on here - trying to cope. Trying to make sense of what happened and how to get out of here. In a moment of despair, you might grab onto the idea that potatoes or sunlight or exercise will help. That’s self preservation to some degree.
Some people aren’t ready to hear that those things haven’t helped anyone so it’s not going to be the cure.
At the same time some people do improve maybe months or years later. My guess is that some people have been trying to plot days that they’ve felt better against a special diet that they’ve settled on and think that’s related. I don’t think it is related. I’ve said many times that my condition has got better with time but I did none of the diets, exercise plans or supplements people say helped them. I think if I had, I might be telling you that I feel better and I’ve been eating 3 baked potatoes a day so it must be that.
With time, I think most people realise the theories don’t deliver results.
At that point we have a problem.
And I think the problem is that people realise that the forum doesn’t offer them much and so we don’t hear from them anymore.
The other problem is that when people feel better we don’t hear from them anymore.
So we can do is either accept our fate, or we can change the story. And I’m pleased that we are making changes.
The biggest thing is that we are encouraging people to share their stories. Ideally with anyone who’ll listen. Maybe to just a friend. Maybe just a doctor. Maybe a government health department.
The best thing to do is to say “what can I do to help” with more voices, we get more done. So, now you’ve realised that the theories, recoveries and diets aren’t helping, please come aboard and help us change the story here.
The recovery stories basically do more harm than good because IMO probably 100% of them are from people who either didn’t have PSSD/PFS in the first place (the same symptoms can be caused by any number of other things) or simply experienced placebo effect, windows, or wishful thinking (I.e., imagined improvement) temporarily.
All the false hope and tail chasing has been a tragedy and distraction/excuse not to do the real work of getting earnest research started. You see the supposedly recovered back again months or years later time and time again.
Yep u got to weed through the bullshit…
I find it hard to believe that herbs will fix a fried dick from 20 years of finasteride use
Not to be the profit of doom but if you have receptor damage which the ones that react badly to supps and don’t get better have such actions will not improve the situation. Fasting and time maybe of benefit but it’s not an overnight fix which is what many traumatised individuals chase. In my opinion Crisper will be the scientific intervention that will bring a medical recovery but who knows there maybe something else out there that melcangi comes up with. None of this will be soon so pushing for awareness and acknowledgement and getting out there is what we have to do in the meantime. If we all do our bit will we get a lot further much quicker. If the public become aware donations will come in. Not speaking up allows the misconceptions of Pfs being about bald depressed men with dick problems. Only we can change this. Many people have parachuted me because of my claims/Pfs symptoms which proves they weren’t good for me anyway. This is about standing together and speaking out don’t hide or be embarrassed. Do your bit. Help bolster the work that is being done on here. It’s our best chance/ hope!