RARE DISEASE DAY 2021: Announcing PFSNetwork.org, a watershed moment for PFS awareness. PLEASE READ AND SHARE

Incredible work everyone.


There’s a problem with incels that they don’t believe some of us who already have full head of hair, i’ve read such comments like “lol, this guy is lying, he isn’t even bald and he’s saying he took fin, maybe he want’s money from merck”. That maybe a reason for the thumbs down i guess !

1 Like

Thanks to all of you from the bottom of my heart :pray:. U all are real strength to people suffering as bad as me.


You guys are amazing. Great job! Very touching, every word you say I can relate to and feel like crying just knowing the pain you have all been through. I’ll retweet.


Completely agree. It is also indirectly quite useful with regards to future studies, as people wanting funding for hypothesis led investigation don’t always demonstrate a reasonable grasp of the clinical picture. Clear accounts like this are good information, too. The clear accounts of people’s symptoms and experiences have been demonstrably useful before.

Thank you for your willingness, it’s deeply appreciated. However, I would give it a lot more time before that step in your case. Some patients see improvement over time, some significantly so, and many get at least some degree of stabilisation after the crash. So please keep hopeful - we generally advise giving it at least 3 months after cessation before taking stock of where you are.

Unfortunately some of that will be unavoidable. As well as more straightforward financial motivations for opposition to acknowledgement, I’m sure there will be asymptomatic users for whom this will be uncomfortable. I’ve touched on this before:

This is a rare situation, and one that is really quite hard to imagine. I hope the majority reaction will be empathy, but equally there may well be a lack of it from some people. I hope patients don’t let it upset them if that happens. Mitch is right: It’s so, so much easier to dismiss and obfuscate this issue in abstract. Not so much when it’s clear it’s a human being. We’re moving in the right direction, and we’ll get there faster with more voices. :slight_smile:



that guy is a scientist and he seemss willing to use his base to tear down institutions like pharma

he’s also said before that he would never take propecia and wouldnt recommend it

can someone with a twitter profile keep reaching out to him to see if he would be willing to share or listen


this guy as well. hes not a scientist but his base is large enough to make an impact

Good opportunity to make a twitter account and send some tweets.

1 Like

id be a sock puppet account and it would come off as spam

ill do it if thats the last option we have but id prefer someone thats already active

It’s safe to say that if it is worth doing then more than one person doing it is better. Perhaps people could spend 5 minutes per day with a twitter account, reaching out to pfs affected people and sharing our videos, for example.

These small efforts are things that everyone could do, rather than silently waiting for the usual idealised solutions to appear.

I’m not directing that at you, Lakehouse, just a general comment.


I agree with that

PS- have we looked into Facebook and YouTube ads for distribution?

They are pretty cheap, and I know how to write a script that will generate attention


I think that’s a good idea but at the moment focusing on what we can get done as a community, using our own voices and the reach we have as individuals is more what we need to do. Of course advertising campaigns would be nice, but I think we’re not there yet.

I think that Facebook etc ads may be cheap, but at the same time we could easily burn through thousands of pounds/dollars/euros very quickly to see a very small improvement in our recognition.

That’s just my opinion.

1 Like

it is very easy to burn through cash with facebook ads

however, i think when the time is right, RETARGETTING ads could be very beneficial as they go after warmer audience members

just something to consider

right now i get that we want to be as organic as possible

1 Like

Is this something you have experience of personally? Feel free to pm me if you have some insights to share, I’d be interested to hear them.

PM’d you

PS can you provide me insights in my latest post asking about BB536 and possible interactions with AR receptor?

i dont want to take it if its potentially dangerous would appreciate your input

Sadly, I am not someone who can offer any insight there. Will reply to your pm later, thanks.

Guys, if you haven’t watched, liked, subscribed, (re)tweeted, commented or shared yet, please do so! The visibility on social media is highly dependent on interactions, hence we need to push these numbers up.

Thank you!


A quick update on the YouTube video series - they are performing quite well, given the size of our community.

Here’s the breakdown since we launched 10 days ago.

Patient stories complilation

This video has 956 views, 58 likes and the best part, only 1 dislike.

PFS explainer video

This video has 620 views, 42 likes and 7 dislikes.

I think given the size of our community and the fact we’re launching a new platform, this is an achievement we can all be pretty proud of. I would still encourage you all to share, like and comment on the videos, and encourage your fellow patients to do the same.

My key observation is that human stories work best. It’s no surprise to me that the patient stories compilation has more views, likes and less dislikes than the explainer. It’s easy to dismiss the issue in the abstract, not so much when it’s a real human.

With that in mind, I’ll bang the drum again for patients to speak publicly on our upcoming video podcast series. We will never solve this issue if we remain anonymous.

Thank you to @Toughluck24 @pokertje @teddy25 and @anon74895881 who have already volunteered - a courageous effort.



@Sugarhouse thanks for the update. Can you add me to the volunteer list?

1 Like

Done. Sorry, I should have said new volunteers.

1 Like