You have no idea how hard I was hit.
You have no idea how hard a lot of people in here were hit.
Leave it man, i apologise if i hurt u… we need to fight for the common cause right !
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No offense taken.
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From an admin’s perspective, the recoveries section has not existed for quite some time, since the relaunch of the forum.
Selectively highlighting the few members who report improvement helps further a survivorship bias. All patients can maintain a member story, and some people have created threads of people they believe are interesting cases and have resulted in improvement. There is a great degree of variability in patients’ conditions to begin with, so any recovery’s relevance is in the context of their situation.
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I can understand that, @Sugarhouse. If individual cases of recovery are confined to the thread of that individual person’s case, it gives a better sense of how frequently people are recovering and a better sense of context for that person’s specific recovery.
A thread of recovery story after recovery story gives a skewed, one-sided, cherry-picked sample size that too easily fits into PFS deniers’ claims that PFS isn’t real, but we all know too well that it is.
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I’m sick of this shit. There IS such a bias against recovery being possible on here. I feel like a lot of people would have the hope and the drive to help themselves if there wasn’t such a belief that it wasn’t possible.
Someone please doubt my case of PFS being legit and my recovery being legit.
Read my post
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I’m not sure why you say that, given if I scroll through latest topics, there’s 5 threads with the words “recovered” or “reversed” in them.
I’m not sure where this narrative has come from in recent times that we as admins are removing recovery stories, or saying recovery isn’t possible, but it simply isn’t true.
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I would say, based on what I have seen, that the majority of the “bias against recovery” is from infrequent contributors who seem to chime to periodically just to tell other people that they’re fucked.
The admins and more senior members have been very supportive, encouraging, and validating, both in my reports of symptomology over the past 8 months and my reports of having been doing much better recently.
There are definitely recoveries, @aletheia and @Finatruth are my top go-tos. If @aletheia 's facial change pictures don’t prove it, I don’t know what will. For a variety of reasons, I’d really like to contact him (as well as Finatruth). Anyone have their contact info? They may hold the keys for us all.
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I think this is why recovery stories are problematic.
I fully acknowledge that people do get better at various times. Days, weeks, months or years later. I’m not trying to take that away. I’m personally able to speak a bit on that because I’m better than I was, but not recovered.
So, with that said, we need to acknowledge how many people have posted their recovery methods and plans and then how many people were able to use that method to get the same result. The answer is that the number is depressingly small.
We also need to take into account people who were trying to exploit the community.
We also need to take into account the people who took advice from others and made themselves much worse. Sometimes, people have killed themselves after worsening their condition.
We also need to take into account the way that these schemes linger and continue to push the community in the wrong direction. The suggestion that various drugs or supplements might help goes back further than you might think.
People have been talking about some of the most commonly recommended supplements for over ten years.
Stop and think about that.
Is a supplement that wasn’t the answer in 2011 going to be the answer in 2022?
Then think about how many people say “yes! This was the answer!” And then come back a week or two later to say that it wasn’t the answer after all.
Then take into account people who say they had a random recovery for a few days and don’t know why. They didn’t take any supplements or eat anything different to usual.
Next, acknowledge the progress that the community has made. Progress in getting the condition acknowledged, doctors and scientists actually getting to a point where a treatment is available for all. How many people actually got involved and worked towards that and how many people put all their energy into trying to fix things using the same methods from 2011 (or before) that we can’t be sure works.
So, let’s balance all these things.
Do we, as a community want to spend our time, money and effort into repeating the same efforts that don’t work, that might be as effective as doing nothing at all, but with the advantage of not potentially making people worse and kill themselves.
I understand why it happens, people sometimes get angry because they’re hanging onto hope. They’re desperate to wake up tomorrow feeling better. I get it.
But for those who signed up ten years ago, the situation has not improved whatsoever. Had the past decade been spent promoting PFS, talking to doctors and scientists and reducing the stigma that patients feel, then in ten years, we might have been seeing treatments take place. Treatments that work. For everyone. Maybe the manufacturers having to pay damages.
Or we can focus on what a few people say they think made them feel better (but hasn’t worked for other people) plus what a few scammers have tried to sell here. No evidence says it will help you. So do that?
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Do we, as a community want to spend our time, money and effort into repeating the same efforts that don’t work, that might be as effective as doing nothing at all, but with the advantage of not potentially making people worse and kill themselves.
But for those who signed up ten years ago, the situation has not improved whatsoever. Had the past decade been spent promoting PFS, talking to doctors and scientists and reducing the stigma that patients feel, then in ten years, we might have been seeing treatments take place. Treatments that work. For everyone. Maybe the manufacturers having to pay damages.
Absolutely. Think about how small this community truly is: there has been under 7000 registrations to this forum. Then think about how much time, money and effort has been wasted chasing therapeutic relief that works very sporadically for a handful of patients.
Patients also need to consider: what is each recovery story “recovering” from? If a patient who experienced erectile dysfunction, anxiety and depression, seemingly “recovers 80-90% of their function”, does that mean whatever they attribute to helping them improve, will help me? As someone who has experienced major physical and neurological changes, such as extremely thinned skin, gum recession, genital atrophy, muscle atrophy, extreme insomnia and fatigue, and crippling anhedonia, our situations are not really comparable.
It’s not a very scientific approach to assume that an effective therapeutic treatment for an extremely variable patient cohort, can be gleaned by combing through the very small amount of recovery stories, who all had vastly different symptom profiles.
PFS is an awful condition to live with. But chasing therapeutic treatments before we even understand the underlying mechanisms involved is like trying to put a roof on a house without a frame. It doesn’t mean patients can’t seek therapeutic relief, it just means that we should also work collectively towards better understanding of the disease.
Anyone have their contact info? They may hold the keys for us all.
Herein lies the problem. There is another group of people who hold the keys to understanding PFS.
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Truer words have never been spoken!
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What sympthom is for you disability?
What is crippling anhedonia, what is the diference with normal anhedonia?
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No need to be like that.
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Crippling is just an adjective I’ve used to describe my anhedonia.
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Unfortunately, this is what happened to me, too. In the eight months since I stopped taking the medication, I have real muscle atrophy, bones in my limbs are becoming more and more visible, my gums are receding and bleeding, and the tissue in the palms and balls of my feet is gone. Having difficulty moving their limbs, I don’t think people who recover have these physical symptoms, they don’t have real muscle atrophy, or they just lose weight. They may not actually have PFS, or they may only have mild symptoms.
What you’ve described I also now have. I had muscle loss 15 years ago with pfs. BUT not to the extent that I now have it. Further deterioration in recent years has brought it to a new level. Basically I agreeing with the point your trying to make.
Oh, my God. Muscle atrophy 15 years ago? How can you lose it for so long, I’m shrinking at a rate that scares me every day, it’s shrinking so fast, I think in six months or 10 months, I’ll be in a wheelchair, the muscle atrophy is making my joints ache, I’m like an ALS patient, not long
It’s an interesting thought. I have the same symptoms as you and even within the community wastage doesn’t seem to be fully understood by those not suffering from it. Dick PFS and wastage PFS can’t be the same thing right? Not to say one is PFS and the other isn’t but they seem to be very different conditions. And I’m pretty sure PSSD is the same in this regard.