There are so many old members that suddenly disappear, and I can’t help but wonder if they got better or if they ended up taking their own life. I believe many of them recovered but it baffles me that they dont update it on the forum? So many people would benefit from these stories
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I suspect it’s mainly one of 2 things 1) they get sick of the torrent of Bullshit cures that do nothing and can’t see much else going on here so they stop posting and either learn to deal with their condition and or gradually feel better
Or 2) gradually feel better and just don’t bother posting again. I think that this is really shitty behaviour, particularly as someone who writes supportive messages and responds to questions regularly, I feel like a lot of people here take for more from the community than they give. “Please help me, I need support” to “no fucks given” about anyone here in a few months.
I think the former is more understandable and hope that we can, as a community, support one another AND the effort to connect with and work with research partners and awareness campaigns.
In general, we could all be doing better, but frankly, I find people who abandon ship very disillusioning. I know of a few people who disappeared only to return having crashed themselves again. I think if you want support you should offer it later when you’re able. Plenty of people don’t, evidently.
As I said though, I don’t think they’re all killing themselves.
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I bet a lot of people just got fed up with all the despair and pessimism in here.
I was very hesistant before signing up, and I still don’t think is a good idea to stick around too much.
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@Greek i think youre bang on. I’m aware of two who left. Both were seriously pissed off with the bullshit. One was improving and decided to go his own way. I hope hes continued on the front foot but can’t help but fee an element of disappointment he should have at least checked in occasionally to let us know how he is and the other has worsened significantly and is in a very bad way.
I floated the idea of having a central database with contact details a couple of years ago inclusive of next if kin info This could be on a volunteer basis and would not breach data protection as long as theres an authorisatiin slip. I know it requires work but think it would prove useft for many reasons. I always regurgitate my stuff! Sorry 
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Man I agree that sticking around won’t do much, but taking the survey will definitely will. Why haven’t u taken up the survey yet? Please take it. Researchers need such data of ours.
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.
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I get that, but you’d think going through something like this would make you have more empathy for people yaknow?
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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…
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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!
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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.
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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.
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Well, that’s worth thinking about.
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From reading around elsewhere and participating in other communities, the culture of despair here drives people away.
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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.
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I saw the latest who adverse reaction another 8 suicides…So don’t think people are not still killing themselves over this…
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News that the science is moving along is never bad news so thanks for that.
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Can you take a screen shot of that and post it on this thread?
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