Hi everyone,
this weekend I will be guest on the medical errors podcast:
UPDATE: It’s done. You find the link to the Spotify episode here:
It’s pretty long. If you get bored jump to the last 5 minutes!
Hope more guys will follow and start speaking out. The more normal we handle it the more it will be accepted.
Good job and very very well done.
Let us know how it went
The podcast went well. I spoke out on PFS, bit in PSSD, how I view as a physician on what’s going wrong in the health system and what the community can do to make a cure come faster.
You can listen the episode on Tuesday here on Spotify:
https://open.spotify.com/show/1PFE7feX2hAAzqwC3ZCjZR?si=aigMrlUTRb-afRRmXYZhGg
If you know more podcasts where I can speak I gratefully accept the challenge. This was my first podcast, so I hope to warm up a bit on the next ones.
No, I am a physician. Basically it’s the same thing in Germany. I just didn’t finish my thesis. At that time I didn’t see the point why I should finish it to just earn more respect. Now, I see it can help as it can confuse people. Maybe I redo my thesis. Would be great if it was on PFS/PSSD/PAS. But I would find neuroinflammation and brain-on-a-chip technology equally useful for the future of PFS research.
Ah ok, do you have PFS or are you trying to help us or both
Thank you, the more people know about our illness, the better.
I am having PFS. But also took Mirtazapine when I got insomnia under Finasteride, so could be a mixture of PFS and PSSD.
I am both offender and victim as I prescribed the medication to myself.
I am interested in finding a way out of this mess for all of us. Speaking out is an important little step. I hope together we can achieve more.
I’m sorry to hear that. A great spirit!!! Awareness is the key to getting help.
I think awareness is only one part of an important strategy. What I hear from researchers again and again is that they would love to do research with us, but they lack sponsoring. We have to tackle this issue. They won’t tackle this for us…
What I mean there are many ways to sponsor research. We have to go them all. If you look at ALS and look at how much they raised you have an idea how much it costs to solve a disease. Private funding is good, but we have to get more creative than that. It won’t be sufficient by a lot.
Awareness will bring a public outcry I’f done correctly. I’ve raised it many times, this should be all over the news channels. Families losing sons, husband, partners to suicide. We are low key but if it was out there Merck would be shamed into funding research.
The YouTube project will, I believe have a donation tag on it. Unless people realise how bad this is it’s unlikely that they’d open their pockets to donate. I.e men with no hair who can’t get it up!! .“very crude but thats how it has been painted” Even some sufferers families think this
Accutane. Kids with spotty faces who lose their sex drive due to self confidence issues.
If un educated and ignorant to this I think I’d have the same view.
We need to change the public’s perception.
If, then it needs to be organized simultaneously. Just a few outings here and there won’t bring much media attention. You need to get a critical mass. I don’t see many people who would be willing to face cameras and speak out. That’s the prerequisite. Simultaneous action and not shying away. We are not there yet.
About Merck, I think there is a thought error. A company cannot be sued to do research. They can only be sued for recompensation. That won’t finance research. Also, I am very close with the lawsuits going on in Germany. To win a process you need a proof, we are far away from that. A 100 patients crying out doesn’t substitute a scientific proof. We are not there yet.
Yes, but we can’t do that by hiding anonymously in a forum. We have to get in front of the cam and say “I have PFS”. Before that nothing will change for the better.
I have said this many times on here. I am in touch with a journalist currently. I asked for volunteers and only a few stepped up. A uniformed strategy is needed. Shaming Merck in to action is my hope. Mother’s of lost young men along with surviiving sufferers in front of the camera would shock the public/be powerful… The documentary that Sylvianne is involved in is the likes of what we need but we need to stand strong together. Too many complain on here but when it comes to it the majority won’t do anything to push the greater cause.
Yes, that’s true. Having erectile dysfunction is one thing, but not having balls is another…
I talked to Sylviane. She gave me her son’s story to publish it but explicitly said it should not include any accusation towards Merck as she doesn’t want to be sued.
Shaming Merck is tricky. This can backfire, have to be very careful with what we say.
In general I think all the grief against Merck is distracting us from taking the action that is needed to speed up research organizing the community.
I’m struggling with insomnia severely since Xmas - was the mirtazapine not any good to use for it ? I have heard good things on here about Mirtazapine in general…
The only thing that seems to give me any sleep is Zopiclone at the moment and I’m getting beyond desperate to be honest …are you able to sleep currently ?
I have a small amount of savings…would booking in with a neurologist be any help do you think ?
The only hope I have is that from Aug - Dec 2020 I had sleep restored somehow and was able to get 5-6 hours per night with no sleep aids…knowing this has happened before gives me hope I can get out of this current relapse , although I’m not too sure what caused this relapse if anything could be episodic periods of this PFS
From my point of view which I know you’re not asking @Forwardsnotbackwards is to stay away from any meds u could put yourself into a much worse position. From someone that knows, trust me!!! Try a clean approach if already doing that stick with it. No food after 5pm. A jacket or boiled potatoes for tea "carbs help you/us sleep better. Have a routine. In bed go through happy memories, mentally walkthrough through the childhood home, seeing the furniture, ornaments, your family as they were. Think love tell yourself you will heal with time. It will put you asleep. Repeat when u awaken. Don’t feed the stress by lying awake worrying about it. Generally 10 to 20 mins of positive relaxing thoughts should do it. Additionally it’s good for your overall well-being not feeding the PFS monkey. You had good sleep prior to Xmas which will likely return, hang on to that, throwing meds at it could alter things permanently. A neuro will suggest drugs. Don’t waste your money