A letter to you, forum

Complete and utter tosh.

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I agree with you too .
I’m finally reaching periods of improvement that have been the best so far , it takes a while and sometimes it’s time , other times it takes that positive mindset to push you through the shitty times

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@eskimojoe

You are a breath of fresh air my friend! I truly believe that positivity is a force of progress and good, and negativity is a force of destruction and evil.

While there’s no cure for our predicament, there are many steps we can take to improve our situation and make life worth living.

A year ago I hit snooze 5x every day as I didn’t have the will to get out of bed. For the last few months I have been getting out of bed before the sunrise and then I go walking or running. At first I did this in an extremely depressed state, but consistency has made it easier an easier and my mornings are more livable each day.

My penis is still numb, no morning wood, low libido (although there are periods of normal libido), but I’m focusing on what I can control at the moment (my existing sides are mostly sexual, but others such as sleep and mood have improved).

Adding Cialis and arginine may help me achieve erections, so that’s another step forward. Meditation improves every aspect of the mind, so that’s another step. Things have been and will be far from perfect, but they are sure as hell better then they used to be.

We should all keep moving forward indefinitely… Sometimes you’re dealt a bad hand in life, but it’s up to you to choose how you play it.

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There is a cure to our predicament. We just haven’t facilitated getting the people with necessary background, expertise, and experience to discover it yet. Instead, in our ignorant underestimation of the challenge, we’ve been sitting here trying to be doctors, geneticists, and medical experts ourselves, which is preposterous, certainly after 15 years of failure.

Pretty sure my outlook is the optimistic one – we have the capacity to get organised and advocate for a cure to our condition. We just have to start. Once we do, a whole new world opens up.

The pessimist’s view is that the best we can do is only what we’ve been doing without positive outcome for 15 years – tragically beating head against wall with self-administered TRT/Tribulus/hCG/Clomid/Welbutrin/Proviron (TTHCWP), often times making ourselves worse, and watching other members of the community die.

Thanks @eskimojoe,

I agree with @orthogs that that is an excellent attitude.

I think that what @Dubya_B wrote doesn’t contradict or go against most of what you’re saying. If I can put words into his mouth, what we’re talking about is not that people don’t improve and not that some symptoms can’t be dealt with through the use of various medications, as you say.

Nobody wants the forum to not be able to deal with their symptoms and frankly, if we could all take a tablet a day that dealt with all our symptoms we’d all breathe a sigh of relief. There’s clearly a problem in how this has been communicated and I’m glad that we can talk about this.

I don’t think anyone is criticising your approach, basically that you have found a way to deal with your symptoms and you’re now trying to live the best life that you can. More power to you.

The problems may arise if you found that you couldn’t manage your symptoms. What happens of cialis doesn’t work for you? What then? Some people on the forum would tell you to try any number of treatments which may or may not be effective and may or may not be harmful.

If I know (and I do on some occasions) that a treatment has worsened someone, should I keep it to myself? I obviously need to say something. This is one of the things that is frequently suggested is a negative outlook. I struggle with how people can see that. I definitely want someone watching my back if I’m making risky decisions. Is that what you mean by negativity?

I think part of the problem is that there is SO MUCH bad advice handed out here that the moderators have to near constantly say either “be careful we know this can he harmful” or “this is an opinion which doesn’t have any record of success”.

I agree that some positivity and hope is welcome but it’s perhaps something the community at large could play a part in.

One of the things I posted a while back was that I wanted people who have improved to share their experiences, and not just stop posting. I think that is what happens a lot of the time as noted above. I hope that people can feel more of a sense of community, empathy and responsibility to each other here.

Be the change that you want to see. If you think it’s a pit of negativity here. Post something positive. But do it responsibly. Saying “I know you’re in a rough spot, it got better for me” is helpful. Saying “I heard some guy bought some chemotherapy drugs and that helped him out” is the kind of thing that is obviously fraught with danger, and we have to intervene and say something.

Does that change anything for you in how you may perceive things?

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Just as a quick example, here’s how things could start:

An admin could temporarily assume leadership responsibilities by crafting a Gantt chart full of tasks and reasonable timeframe for each. One item might be getting 20 more PAS survey responders, another might be getting 20 more PSSD responders, and another 50 PFS responders. A fourth row/item might be finding a volunteer with video production experience to lead video project. Then 5 people with PFS, PSSD, and PAS each could be found to participate in a mini-documentary (e.g., 10 minute video on our problem and how it affects the lives of those around us) as another rows 6, 7, 8 in the chart. Then two family members of victims could also be found, such as ex-wives, children, mothers, etc. A quality video would let the world know we exist and that our issue matters.

A tenth item might be finding a community organiser. Such a person might be paid $50 an hour to work 50 hours a month, paid for by 50 guys here committing to contribute $50 a month via Paypal subscription, and ideally be chosen by someone like Awor for their background and expertise in relevant science for planning and directing community scientific efforts going forward. Etc.

A member of the community would take responsibility for each item on Gantt chart and we start ticking things off. Results coming in would lift moods. With a video and actually demonstrated productivity, the community would start to come across as something to be taken seriously rather than as bunch of probable wingnuts and drug company conspiracy theorists who haven’t accomplished anything but injuring themselves popping misc pills for 15 years. In turn, outside contributors could be engaged with greater success, enabling better finances and more hiring toward scientific efforts. And so on. That’s how things get done – people getting off ass and capitalising on snowball effect. The items I described above would only require exactly 10 people doing just one task each.

These are the kinds of things we should be talking about. Not what $200 bottle of “libido boosting” herb we think might not make people crash, what we think our hormone levels are based on how we feel today, and latest pet theories rooted in Biology 101 level medical knowledge.

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I think this is a positive thing to be talking about @vkg1. Are you volunteering to help out? We’d love to have a few more people helping out.

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Obviously

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Are you even enjoy your life with this disease? Seriously what are you hoping for to happen? Donating our money and sit on our ass for 10 years and wait for a stupid study to shed some light to our situatuion? (It is good to donate money to studies, if you have money do that. Fine.)

How many protocols, diets, drugs and treatments have you tried so far Greek? I tell you what, you will never recover with this state of mind.

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TLDR; we aren’t permanently broken but trying random protocols shouldn’t be a priority

I used to be on the side of trying protocols thinking they will help

I had zero effects

I witnessed some get better

And many get worse

Do I believe some people recovered or got better? Yes but it’s hard to know how much we protocol helped

When you try a protocol you are playing Russia roulette

That being said I understand why people try them

But one thing I’ve changed my mind on is the idea that people who recovered just left without a word

I think people moved on to deal with the cards they were dealt with

If they got better and left, I would assume they would at least make 1 post

Like that on guy who supposedly got better from the antivirals

He told us

And then he left for good

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I look forward to your recovery story.

Update: I apologise for this sarcastic response.

Best of luck with your experiment.

By the way, at no point in this topic have I said that people should donate to the foundation. I’m not saying they shouldn’t, either. People who have tried to score points against me have said that’s what I have said.

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Nobody is taking anyone’s TRT/Tribulus/hCG/Clomid/Welbutrin/Proviron away from them. I don’t get where the animus is coming from. Do we want to get cured or not? Why would someone ever object to the idea of advocating for recognition of our condition and for commissioning experts to find a treatment?

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At a guess, lots of people have a lot invested in the idea that they can fix themselves with supplements. The lack of evidence for their success has to be put to one side, and that ends up being the symbol of hope they hold onto. That’s why some people can’t be civil, they’re putting reality to one side because it’s scary to think that there’s no easy fix.

I think it’s scary too. That’s why I hope that people will start thinking about alternative courses of action.

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I don’t personally have the time or energy, but why not first set up a slack for this.

@pvdl your sole contribution to this forum is either to a) claim cdnuts is a fraud or b) Claim recovery is impossible

Re A, I agree that he probably trying to monetise peoples desperation which is highly unsavoury, his protocol is basically a how to of “optimising health and hormone levels” I have no doubt that this will help people with our condition, if not a silver bullet. I don’t understand why you are so desperate to attack him, why do you care?

Re B, Simply incorrect and unhelpful. If you read forum enough you will uncover a new one everyday. I personally know someone who has recovered

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Emphasis mine.

Utter nonsense. But if it makes you sleep at night, I wont try to talk you out of this perception.

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you are totally entitled to have an ultra negative perspective but it’s probably best for everyone else if you keep it off the forum

  1. To repeat I know one individual personally who recovered over time, I have been in contact with multiple others who have had significant improvements, some fully recovered

  2. For your own benefit, It wouldn’t take a genius to realise that if you have convinced yourself recovery is impossible, you probably wont recover

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Me too! They were all within the first year post-drug. Most of them the first 6 months.

Thinking this condition was impossible didn’t stop anyone from getting hit with it. Guess it works different in the other direction? And that’s not to say that it’s entirely impossible. Many of us are moving forward with the expectation that there is a way out. Staying positive is entirely different than being delusional about the current state of affairs.

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agree, my point is attitude and mindset is a v important factor in recovery from any type of illness or condition

Theres a whole science behind this and its the single explanatory factor behind the nocebo effect

in many cases dwelling on our situation can enhance depression further

The one thing I do know about this is that recovery is painfully slow and not in a straight line. Approaching the long path ahead with a positive mindset makes the journey more bearable than dwelling on our misfortune every day

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I’ve searched this forum and seen many recoveries here and even a lot outside of this forum. Probably around 100+ and that was without searching too much.

Saying nobody recovered is a lie and will only damage yourself, being positive is detrimental with our condition.

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