It would be useless.
My story is (unfortunately) one of a kind, Fin added up to a delicate condition and wasn’t the only thing accounting for my symptoms, although it definitely knocked me to the ground.
So, my answers would just provide confused data.
When the time comes, I’ll tell my story in details.
Pretty much what I’ve been thinking aswell. It makes me wonder if those people really got hit as hard as some of the others on here. Like I can’t imagine not updating about my progress if I start feeling better. We all know how dreadful this shit feels, and just leaving like that when you get better (which I am sure most do) is just an asshole move. Those that leave the forum for their own good,I get it, it can be hard to read all these stories with no signs of any cure and the negativity at times can get to you. Those who recover and disappear without letting anyone know, asshole move.
As much as I hate the behavior, I don’t blame them.
I once spoke to a doctor who told me about how fast many people who heal run away from hospitals and doctors, because “the first thing people want to do when they get better, is to forget they were ever sick”.
Of course, dropping a “hey! I’m better” message won’t hurt them.
I get that, but you’d think going through something like this would make you have more empathy for people yaknow?
I highly suspect that any of the older members just gets better and cease to update his status etc…
PFS is like every chronic condition…As long as it doesnt get worse the human mind gets used to living with it, same as Diabetes, same as non aggressive kinds of cancers…Patients get used to those and just live with them and go on with their lives (Usually with 100 times more quality of life compared to us)
Sorry for my pessimistic view, but thats just how i see things…
See what one of the worst sufferer ever said after he quit the forum…
I think the main reason is that their condition has not been resolved, and they have not found a solution, so they have become silent, or they have done other things, because they feel that endless discussion of the same problem here is a waste of time!
Greek, I do care about this community and website however the label of PFS makes it challenging for people to truly move on and work with doctors to fix their issues. The hardest part for me is the psychological aspect.
As a current student working on a masters of psychology with aspiring goals to be a therapist/social worker, there’s proven studies that placing labels over our head (PFS) negatively impacts our behavior and health while avoiding labels provides mental health and health benefits. This includes people with Alzheimers, cancer, etc…just food for thought. Maybe I can be a better contributor by adding information to the coping part of this website instead of wanting to leave.
I think one of the reasons that people leave without a word is that nothing really happens here. I got PFS in 2008, I’ve been a member of the forum for years and I was a lurker before that, and nothing changed or got better for me.
I tried pretty much all the protocols here, none of them got me any better. Harvard study result was a total disappointment and we’ve been waiting for Baylor to be released forever but it feels like it never will after so many delays.
When I became a member of this forum I thought that all of us working together would get us closer to a cure, but it didn’t. Nothing ever happens here, it just feels like a waste of time being here.
Well, that’s worth thinking about.
From reading around elsewhere and participating in other communities, the culture of despair here drives people away.
All comments are valid and relatable but as @Greek has said many times we need to work together to move things forward. Let’s turn the negativity, frustrations, despair etc in to something that will help change our fortunes. I’m on my knees yet I spend all of my energy fighting this disease in different ways and part of it is by playing my part in getting us recognition. I have a mail sitting with a complex caseworker at the British medical health regulation authority. I have another one with Sir Alan Campbell who is a Member of Parliament who will hopefully escalate it to the British Health Minister. I wrote to Heath Ledger’s sister and Robin Williams wife. i had my story featured on rare disease day, I was interviewed live on a global medical podcast, I was in the Daily Mails health column. I was involved in the you tube video project. I relentlessly harrass my Doctor’s. At least Ill know I gave it my all and didn’t let Pfs take me out without a fight. I believe the fight instinct has kept me in the game thus far. If everyone put their game hat on we would be much further forward. The defeated ethos is whats destructive on here .battles were never won with such mentality. Stop looking for healing in supplements, bizarre regimes and start doing your bit to get us recognised… Soldiers sitting on their hands looking to others to do their fighting will not win the war. Everyone playing their part is what will turn things around. Getting your health back, standing tall, reliving!!! What more of an incentive do you need.
I saw the latest who adverse reaction another 8 suicides…So don’t think people are not still killing themselves over this…
News that the science is moving along is never bad news so thanks for that.
Can you take a screen shot of that and post it on this thread?
It’s difficult to know what to say to this. As far as I can tell, the culture of despair is categorised by us trying to put forward:
Building to a future where we are recognised, studies find out what the problem is, treatments are possible and Merck are dealt with. Who’s in?
The problem is that doesn’t match up with “I read about a guy who is selling some magic beans, so that’s the route I’m taking”.
The only reason to despair is putting all your faith, time and money into treatments that don’t work. Maybe ones that are harmful.
I understand why that is disheartening, but there’s no point in aiming to be the person who’ll be cured by the same treatments which failed a decade of posters.
Frankly, there’s no other way to think about this without either dragging this community into further mire.
We are the only group that got anything of substance done, and don’t be mistaken about that.
This is the best chance you’ve got. This is only depressing if you don’t join in.
The problem is that people don’t want to hear the inconvenient truth: that a bottle of supplements aren’t going to cure a severe health condition. Sorry.
The more people who come around to that way of thinking the better. The more people who focus on the dubious recovery stories, the hunches, the theories the further away progress gets.
The only source of despair here for me is the same implausible stories about gurus who claim to know how to fix this using herbs and other nonsense. If it’s true, then don’t post about it, just do it, surely?
I got better. I have posted many times and drop by a few times a year. My personal PFS was eventually discovered as low estrogen which most doctors will not test you for. Who tests for low estrogen in men??? I’ve actually had numerous conversations with multiple people here who also discovered they had E2 problems. TRT eventually fixed me but it was a very long battle. I even was on antivirals at one time just to try to fix this. Too many people come here and take one pill one month and another pill the next month and then something else the third…. Or try testosterone for 3 - 4 months and claim it doesn’t work. I learned that all this will cause a hormonal storm where it’s difficult to figure out what works and what does not. It took me years but pure testosterone injections with no hcg and no anastrozole fixed me. I eventually discovered I’m super sensitive to estrogen and just injecting testosterone every day sub q fixed me … I also discovered that TRT is a very long journey and takes a year at least to feel normal … i should point out that everyone is different and this was me and my personal journey but if you go to any weightlifting forum where people have screwed up their estrogen with androgens, they will complain of pfs type symptoms. A few years on T fixed me
Glad to hear that you’re doing better man, awesome that TRT worked for you!
I keep in touch w a number of guys who no longer come here. I think the primary reason is just that they learn to live life with their symptoms and decide not to waste energy here anymore.
You get the same regurgitated theories and trials here over and over. This disease just sucks and it would be great if the Baylor study published so we could hopefully move on to the next step in this world we live in.
I think the ones who get better are less likely to remain posting here. You wouldnt hang around in a cancer support group after you recovered from cancer, would you?