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Skye249

She said on her blog last year that she was retiring from talking about herpes. She's faced a lot of stress from being constantly criticised and verbally attacked by people, plus sometime before that had said she didn't have anything else to say on the topic. What do you think about her @Micah

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Micah

I think she said she can't relate to people who have outbreaks. She has ghsv1. and hasn't had an outbreak in 3 years. She wants stigma gone but doesn't use her platform to discuss the lack of medical care we get. She just wants people to not fear it so she can have sex. That's what I think. She thinks it's no big deal. Because she personally hasn't had much issues.

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Todd27

Great video! I enjoyed it.

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K_Sock

@Micah It's easy to criticize.. It's very very hard to have done what she's done and she should be applauded.

I'm even on the other end of the spectrum as i've raised $124,000 for hsv research via DRACO. Granted it hasn't accommplished anything but I tried to build upon the 'success and fund other researchers and was similiary criticised by the 'arm chair' critics. 

Short of the long is that it's the bigger picture that matters and all of these petty personal critiques don't help. There are only two key missions in the bigger picture and we should all support both.

1) "Stigma-fighting" - this is about education.

2) "Cure - finding" - this is about getting better treatments and/or a cure  

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Micah
16 hours ago, K_Sock said:

@Micah It's easy to criticize.. It's very very hard to have done what she's done and she should be applauded.

I'm even on the other end of the spectrum as i've raised $124,000 for hsv research via DRACO. Granted it hasn't accommplished anything but I tried to build upon the 'success and fund other researchers and was similiary criticised by the 'arm chair' critics. 

Short of the long is that it's the bigger picture that matters and all of these petty personal critiques don't help. There are only two key missions in the bigger picture and we should all support both.

1) "Stigma-fighting" - this is about education.

2) "Cure - finding" - this is about getting better treatments and/or a cure  

Draco couldn't help hsv. I destroys the cell the virus is in. In the case of hsv that'd be neurons which would be harmful. 

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K_Sock
4 hours ago, Micah said:

Draco couldn't help hsv. I destroys the cell the virus is in. In the case of hsv that'd be neurons which would be harmful. 

Not the point and Dr.Rider has responded to that in the past. Also, I hope you're not selfish enough to not see the potential of a broad spectrum antiviral in as far as it might've helped others. We'll never know..  

Anyways, DRACO was always intended to be my gateway that would allow me to amass large email lists and establish credibility before proceeding to fund other research. In the end, the support from the hsv community was just too little and the sentiment against me for trying to support DRACO too much. 

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impugn
22 hours ago, K_Sock said:

@Micah It's easy to criticize.. It's very very hard to have done what she's done and she should be applauded.

I'm even on the other end of the spectrum as i've raised $124,000 for hsv research via DRACO. Granted it hasn't accommplished anything but I tried to build upon the 'success and fund other researchers and was similiary criticised by the 'arm chair' critics. 

Short of the long is that it's the bigger picture that matters and all of these petty personal critiques don't help. There are only two key missions in the bigger picture and we should all support both.

1) "Stigma-fighting" - this is about education.

2) "Cure - finding" - this is about getting better treatments and/or a cure  

 

I don’t mean to butt in but

$124k is a lot coming from herpes sufferers, may I ask how you raised this? 

Also, how do you feel about Aurx Inc? They had a pretty successful vaccine but it never went anywhere do to funding. It did what Theravax was supposed to do. 

http://www.aurx.com/index.htm

http://www.evaluategroup.com/Universal/View.aspx?type=Story&id=256325

 

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K_Sock

@impugn haha yeah I've heard of Aurx. Almost did a spin-off pharma partnership but I can't put the details here. It wasn't to advance the vaccine though.

To clarify, the $124,000 did not come from hsv sufferers. I'd say less than 5% of that money came from our group based on the analytics, survey results and conversations I've had. Most of the donations would come from media articles expressing DRACO as a potential broad spectrum viral cure that might end the common cold.. Mentions of the research being focused on herpesviruses was kept at a minimum because it was turning people off and donations wouldn't come in...

There are too many 'arm-chair hsv sufferers like @Micah who won't lead or follow.. 

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impugn
49 minutes ago, K_Sock said:

@impugn haha yeah I've heard of Aurx. Almost did a spin-off pharma partnership but I can't put the details here. It wasn't to advance the vaccine though.

To clarify, the $124,000 did not come from hsv sufferers. I'd say less than 5% of that money came from our group based on the analytics, survey results and conversations I've had. Most of the donations would come from media articles expressing DRACO as a potential broad spectrum viral cure that might end the common cold.. Mentions of the research being focused on herpesviruses was kept at a minimum because it was turning people off and donations wouldn't come in...

There are too many 'arm-chair hsv sufferers like @Micah who won't lead or follow.. 

HSV sounds like the red headed stepchild of the medical field. There’s not many diseases of this caliber that go ignored. It really grinds my gears. We all want that cure or functional cure but in the medical field hsv is considered a cosmetic issue. BUT what’s even worse than that is the fact that people with HSV don’t create awareness. There is no doubt in my mind that if we had the awareness that HIV had, there would be a vaccine out already.

I talk about HSV all of the time, all my buddies know I have it, 2 of them have it themselves, practically my whole family knows, literally I don’t care who knows I’ve just been very informative about it if anyone of them asks. 

I wonder, if there was a cure out there for $150, would positive hsv people buy it? Duhhhh. So why is it so hard for them to realize that if there’s a better treatment they should probably donate to it. Aurx is a very good example of this, it out performed current anti virals by a long shot and that was with a low dose. They needed $10 mil to do a phase 3 trial, well if 64500 donated $150, they would’ve had that. I know it’s a lot harder than it sounds but it’s still a true statement. Well if the outcome of the phase 3 was good they were going to come out with full production and sell it in Mexico. Aurx was a company who would’ve came out with a 2.0 of there vaccine most definitely. 

BUT in the end most herpes sufferers want or expect the companies producing new treatments to do all the legwork, it’s sad it really is. Me personally would donate $2500 into Aurx or even Genocea

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PrettyDesperate

I love that she's talking about herpes and trying to educate the public. Although I do get outbreaks so I'm different from her.

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Quest

It would be better if someone talked like that who actually had HSV2.

I can't imagine shamming someone having HSV 1

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Micah
9 hours ago, K_Sock said:

Not the point and Dr.Rider has responded to that in the past. Also, I hope you're not selfish enough to not see the potential of a broad spectrum antiviral in as far as it might've helped others. We'll never know..  

Anyways, DRACO was always intended to be my gateway that would allow me to amass large email lists and establish credibility before proceeding to fund other research. In the end, the support from the hsv community was just too little and the sentiment against me for trying to support DRACO too much. 

I'm not against draco. I think it could be something great. I wasn't aware he addressed the issue I stated. Please enlighten me. I'm open to hear it. I just though since it basically destroys the cells the virus is in and we can't destroy neurons without repercussions that it wasn't a viable option. 

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bailey321

Thank you SO MUCH for sharing this. I had a swab done on a sore last Tuesday and was put on a high dose of Valtrex, and my gyno called me earlier and confirmed I have HSV-2. I watched this video for the first time two nights ago and it really changed my outlook on HSV in general. 

I was at an extremely low point in my life for the past week. This video really got me through it.

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Anonxyz

During the first few days of my dx I found her blogs and read a few. She put me at ease a little hearing her story and getting her take on it. I think she’s doing a good thing putting it out there. It doesn’t matter why she’s doing it or what she has to gain/lose from it.  I’m glad there are people like her that are this brave to talk publicly.  I could never do that but am so glad people like her do.  I applaud her. 

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Skye249

@Quest but people have shamed her for having hsv1. They don't care about the type. They care that it's genital.

She has achieved alot, I think. People have to remember she is speaking about her experience and views only. Maybe this is something only people with hsv can appreciate. 

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Quest

That's really too bad! All the sufering really need to stop! I have much more to learn.

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Chica03

I'm new to all this. Got diagnosed a almost a month ago now.  HSV2

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Skye249

@Quest I'm still learning and I'm two and a half years in. It's exhausting learning about something you hate.

@Chica03 her name is Ella Dawson and she has her own website. Well worth a read. 

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K_Sock

@Destroy herpes 

What is this movement you propose? If we want change we need to do nothing short of forming a non-profit and raise millions of dollars. 

There is some commentary above about my funding efforts, but it's just really hard to see the drastically better outcome that would be required to deliver the kind of results you impress. I tried very hard to create a movement from several different angles (not just Draco) and it's ridiculously hard. 

Not trying to pull you down..just trying to open up the discussion.. 

Edited by K_Sock

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honkschonks

Who cares if she has hsv1 or hsv2, if she has outbreaks a lot or never?  She has genital herpes, which is what she has to explain to future partners for the rest of her life and face possible rejection because of it because of people’s lack of understanding and awareness. They don’t care if it’s hsv1 or 2. It’s genital herpes. No thanks. I was just diagnosed with hsv2 and am absolutely dreading having to do that. I feel like my sex and dating life is basically done with, something I really enjoyed. Something that helped me get out there as quite an anti-social person. It’s a shame that I’ve only had the opportunity to learn so much about it after getting it.

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