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Yes, very motivating post for all sufferers. Keep the positive attitude mate :+1:t2:


very helpfull


@thehorsesarecoming nothing wrong in saying how it is when you’re suffering on so many fronts. I’m with you brother.

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Only if we continue to chase our tails impotently talking about TTHCWP rather than assembling as a proper community focused on getting research started.

Once we have scientific proof of our condition the game completely changes. We only have ourselves to blame for all the suffering and lives lost over the last 15 years.

All we have to do is start promoting research. It’s our fault that we suffer the way we do. It’s entirely within our own power to fix that. We are victims only of ourselves at this point. The period to blame drug companies elapsed many years ago.

This isn’t true.


@jinstewart 100% it’s not, none of it is

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At this juncture it is. All we have done is sit here buying herbs off scammers and talking about how evil drug companies are. For 15 years. We have not moved the needle one iota on establishing what PFS is scientifically speaking, which is the first step in obtaining medical treatment. We have not behaved as adults responsible for doing what they can in their lives, rather more as perpetual victims who sit and belly ache waiting for some non-existent tooth-fairy to come rescue them from their plight. I am not saying we should feel bad about ourselves so much as that we now need to recognise that nothing will come of the approach we have taken thus far.

It has been clear from the beginning that we need to find out what PFS is if we are ever to obtain a cure for it. In other words, it has been clear from the beginning that our first step was to do whatever it took to get scientific attention. We have proceeded as if just because we are victims, then someone will come and save us, which it should be abundantly clear will never be the case now. That was not a thoughtful or responsible notion. Just the opposite, the last thing a drug company or anyone else would want to do is help prove to us that PFS exists. That was 100% on us to do.

We have sat and complained while doing nothing, which was the utter opposite of what will be necessary to obtain a positive outcome. We need to focus entirely on doing whatever it takes to get scientific attention: unify with other victims, get the word out, give scientists data, establish a plan of concrete steps toward getting scientific funding, etc. There is no point in complaining as long as we are not doing our part.

As long as we have no scientific proof that PFS exists, we are indistinguishable from hypochondriacs and any number of other nut jobs. The longer we go complaining without doing, the more we consign ourselves to that category.


I agree @vkg1 but the first step is getting the word out and not enough has been done to do that. As ive said many times this should be front page news. We have enough to make a case. I wrote to Robin Williams" wife again yesterday in an effort to get a big hitter on board. Once it gets the attention of the world work to find a treatment would follow. I just don’t get why there isn’t an effort to get the headlines. The YouTube project will bring some awareness but the news channels remain the best platform.


We need to do all steps. Right now zero steps are occurring. There shouldn’t be any waiting for other steps to take place. But yes I generally agree with you. But what’s happening on that step? Nothing. Youtube project going nowhere. Let’s not kid ourselves or misinterpret weak and thus far symbolic action as progress. Anything that currently isn’t actually moving forward is worse than nothing if it gives people the false satisfaction of thinking that things are actually already progressing.


It seems like the youtube project is slow because they are collating enough videos, before they can make a more professional and impactful one. The project will be completed, it’s just the ideal video they want requires more submissions and they need to be prepared to wait.

Behind the scenes people are every so often trying to bring awareness to people or a group of people who could make a real impact.

I’m waiting for a quite period in work after I complete training exams, hopefully this week to plan and attempt how to increase trans pfs participation. If this works, we might create a dedicated section for them.

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Can any of you do video and submit it for the project??

It isn’t, and has never been at any juncture. You are wrong.

I will put some consideration into doing this. It’s not easy, given that it’s not something I talk about to anyone outside the internet.

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Great that you’re making the effort.Living in this dark room wont get us anywhere

This is eternal torture like life in prison in solitary confinement for a crime we did not commit.


That could be preferable to this emotional hell.

Well, what are you going to do? Are you going to sit and complain for another 15, 30, 45 years?

We have to do something guys. If you are serious about facing the world and making something of the one shot at life that we have, rather than just having excuses to check out, you gotta do something.

Here is an example of how easy that could be: A letter to you, forum

The last 15 years have been a tragedy. Unless we change, so will the next.

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glad i could help lol

will do lol