I have been meaning to do that forever.
It feels good to have actually contributed my answers, I started filling it out ages ago, fortunately the form preserved those answers so I had half of it done and just needed to get the second half finished.
I must stress this to everyone here, filling the survey out is likely more important than anything else you will do here. If not just for you but for everyone who has been struck with this disease. If you don’t fill the survey out, you dramatically worsen the chances of us gaining recognition and funding. I knew this and it still took forever for me to get around to it. I’m making this topic as a prompt for everyone else who meant to get to it but hasn’t found the time yet. It’s not difficult and it doesn’t take long. It is a little boring. I can’t deny that.
To put that another way:
Please fill out the survey! It’s very important! The guys who provide this forum spent thousands of hours making sure the results from the survey can make a difference. They hired a programmer to write custom code to make sure it all works properly! This is a really big project! It is the most important thing you can do today to help yourself and everyone else out of this mess. Fill out the survey! Help yourself by filling in the survey! Your answers don’t have to be tied to your username if you want anonymity. There’s no good reason not to fill the survey in.
I realise that everyone wants to find an instant cure, which is why people are prepared to eat spinach by the kg or whatever else but just assume that or something similar won’t work for you for a few minutes. It’s possible that in 5 years
time you could still be googling “PFS Cure” and hoping the random forum post from ten years ago you land on has the answer.
If you fill the survey out, you can make a difference in us getting recognised. When your doctor says they don’t believe you or that you must be imagining it, it’s because all we have is forum posts and arguments. Fill in the survey and we can get this recognised, have scientists become interested, get funding for real research. Fill the survey in. It is the most important thing.
Unless you personally have a few million dollars to finance research. In which case, pm Awor. He has the contacts.