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By jmherped · Posted
Quest, what is your protocol exactly for taking out a breakout in 24 to 48 hours? -
By jeraldpeabody · Posted
@MikeHerp totally agree and understand! so i would say the first port of call is to somehow bring all these different voices together and work out a good way to collaborate. I've contacted some of the people on instagram / youtube that have fairly big followers but I have yet to hear back from them. I might try another tactic! What are you thoughts on trying to have a central point of information / communication for the movement ? is it worth setting up a discord / slack kinda messaging app ? for example i can't use this forum on my phone at all, I have to be at my lappy to use it. I also appreciate what Rich does, but he has very few followers on social if you compare him to alot of the female voices on there. LaureenHD is prob the biggest herpes advocate I can find out there with a large following. I'll reach out to her again.. -
By jmherped · Posted
Does anybody know what an extreme dive in the chamber like the one the diver who was cured would do to a person? Is it painful/dangerous, or do you just go in and out like nothing happened? -
By jmherped · Posted
This looks very promising... I'm in Cabo and they have one of these for divers at the hospital. I'm going to check into the cost. John146, are you still using your home machine? -
By MikeHerp · Posted
Right. I agree that goals are important. 1. I want to continue to raise money for FHC. I don't think it has to be that far off as you mentioned, though, as you noted, it still needs a bit of time. I have a feeling we'll be surprised how quickly progress is made, and the FDA does not seem intent on slowing the progress this time. Further, once human trials actually start and this stuff starts to show it's quite effective, I think things will become a bit more optimistic for the rest of us even if completing the trials still takes some time. That's how I see it. Of course, it's possible that it all fails, it hits huge roadblocks etc. There is that risk. But I believe this gene editing stuff is here to stay. Every serious analysis of futuristic technologies I've reviewed, seems to think so as well. Also, the more important thing is what I wrote at the bottom in boldface--we can make things happen, we can change or at least bend the reality if we try. In my view, that's more important than how far away something might seem. We've had several veterans here chime in, like @Cas9 who are older, who have dealt with this for decades even, and they aren't even sure whether they will be around when a cure or partial cure gets rolled out (I think Cas9 will get it in his life though), but they still urge us not to give up hope, that there's more momentum now than there used to be. That's more important than the notion that something might still take some time. 2. We can get behind other research efforts / trials. As somebody else mentioned, once pritelivir completes its phase 2, we can begin writing to the FDA to have it approved, to allow it to be tested in not immunocompromised patients. That kind of grass roots movement will be easier if it is concentrated, coordinated. 3. We may consider looking at other fund raisers. Other things may emerge and there are people who are working on herpes stuff (like Doctor Iwasaki) who need money. But at this time. I don't want to get side tracked. Ive also been carefully watching Rich Mancuso's efforts regarding theravax. My only issue with it is that his petitions are asking the FDA to fast track Therevax. But the vaccine hasn't even been submitted to the FDA for testing, so it doesn't seem like it makes much sense to petition the FDA to fast rack it now. As far as I know, the FDA can't fast-track something that hasn't even entered the process. But, Thiel has invested close to $10 million in it, and if it does get into human trials, we could consider joining forces with Rich to highlight that and maybe write appropriate letters to the FDA. 4. As you mentioned, raising awareness. Across various platforms and across various geographical regions. Hopefully also converting more people to our cause. For example, @hsv2fighter mentioned to me that he is trying to put together an association of Chinese HSV patients. I imagine there must be millions. And with ppl in China being increasingly connected to the internet, I think there could be many with whom we can unite. Likewise, that kind of channel could give us a better view on what they are doing in China with gene editing etc. 5. As you mentioned, unifying people to show how large and important the movement is, and the need for more funding and research etc. 6. I believe relevant additional goals will emerge on which we can act, and if we have unified, it will be easier to act. Most of the time, even if somebody has some good idea to do something, not a lot can be done because people aren't coordinated. Somebody creates a petition, and maybe 5 people sign it. Look, the whole FHC fund raiser didn't exist 2 months ago, but came into existence because I reached out to FHC and they were responsive to and supportive of the idea. So that was good. But that alone might not have accomplished much if the good folks at Honeycomb, hadn't not only pinned the post about the fund raiser, but also given it their informal seal of approval. And now, because of all that, we've raised over $10k, and that's only based on mainly small donations in a few weeks from our community. We haven't even really targeted any deep pockets (we've barely tried) or done a lot to sell the case, rather, we've mainly just donated ourselves. All that stuff happened because people worked together. The point is that, we can make things happen, bigger things, if we try. That's what I'd like to focus on more than the idea that something might be far away or it's hard to do something. Anyway, thanks for your efforts. This stuff is easier when others are also contributing and you are helping a lot.
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