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Lauren401

Lets Start a Movement (aka the social media plan)

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Lauren401

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moialbalushi

Thats a really great idea. Finally !! Can we add instagram as a tool too ? 

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howardsmith8888

@Lauren401 @SupermansJustice I hear what you're saying, however it is somewhat contradictory.  When you use words indicating that this virus affects more than someone's skin and that it can greatly affect their life...you are adding fuel to the stigma.  I would caution the language you use when tweeting, but overall agree with your mission.

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Whyyyyy

I understand what you're both saying...I'm torn. It's awful that we can't we have both, a cure and no stigma!

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useless

Still haven't managed to get into twitter. I going to get one of my kids to do it for me. I'll make some excuse about not wanting anyone i know to follow me. People can share their illness with other people and have support from those around them. I've never felt so alone in my life. Never feltso low before. II've been through a lot in my life things i don't want to mention. But none of those things ever

Made me feel i like being dead was a better option. Just how i feel i know not everyone feels that way. Sorry for bringing the mood down but I'm tired of sobbing as soon as I'm alone in my room and know no one going to see me or hear me. Tired of being scared and ashamed. I want to be apart of trying to bring awareness that this is not right.  

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OffTheGrid
2 hours ago, Whyyyyy said:

I understand what you're both saying...I'm torn. It's awful that we can't we have both, a cure and no stigma!

The only way you'll cure it is disregard the stigma and enlighten people on the true nature of the disease. If you downplay the true symptoms you are experiencing when you visit the doctor for any ailment would you expect them to have a sense of heightened interest in providing you the best treatment?

 

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Whyyyyy
8 minutes ago, Clearme said:

The only way you'll cure it is disregard the stigma and enlighten people on the true nature of the disease. If you downplay the true symptoms you are experiencing when you visit the doctor for any ailment would you expect them to have a sense of heightened interest in providing you the best treatment?

 

I honestly don't have noticeable symptoms (yet)...my issues with H are psychological.

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OffTheGrid
9 minutes ago, Whyyyyy said:

I honestly don't have noticeable symptoms (yet)...my issues with H are psychological.

 Your psychological symptoms are one burden of the disease which I don't think should be underestimated.

Edited by Clearme
Additional info

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Whyyyyy
49 minutes ago, Clearme said:

 Your psychological symptoms are one burden of the disease which I don't think should be underestimated.

I agree 100%...I'm all for a cure! But I also agree with howard8888 in that sometimes we perpetuate the stigma by some of the language we use.

Edited by Whyyyyy

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cowpoke02

if they don't think its that bad they won't research , haha . stigma is a good point .. it is brutal for some and most at times .. can't sell rainbows and expect action . hurricane you get funding . haha.  bugs life . great example of government creation of man enslaving its creator . people just have to work together ..  never know but not me . to much stress all ready in life .. occupied in other ways .  sticking to my bee meds  .  

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medicalanonymo

Guys, herpes is a disease, let's not try to make it small but neither is it life threatening so don't make it big. Let's say what it is.

We have to find a cure and it can be found. Everything in this world has a cure but we gotta look deep into nature and more people looking into it.

Let's list all the brilliant scientists in the world on this site. So we can start contacting them and ask them what they need to devote their time for Herpes.

If it's money we will pool in after selecting a few (by voting). Now all of you do a favor and find a list of scientists from acedamia, companies or independents.

Thanks

 

Edited by medicalanonymo

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hitkid

Alright, so I don't want to tell you guys what to do, but I think you're going about this wrong. Yeah twitter can be used, but you're much better off using Reddit. It's easier to manipulate things to the front page then you believe. If you get a 100 people to upvote your post with in an hour on something like r/videos, or r/todayilearned with a catchy title: "TIL the herpes virus stigma was created by such and such pharma to peddle new medicine. Before that no one cared.", or "Adam ruins herpes" you have a better chance. 

Also, don't reach out to the Bill and Melinda gates foundation. Bill Gates has criticized the west for spending money on small diseases like herpes that don't do much to save third world countries where no one gives a shit about herpes. Your best bet is to get a celebrity endorsed hashtag going, which I'm sure if you reached out to Adam Conover, from Adam Ruins Everything, he would help you out if you had enough support building. Also try and get into contact with  Buzzfeed, Vice, and maybe even the Huffpost. Link to a place where people can anonymously donate to a reputable place and you'd have better luck.

Also you should focus the strategy around how mostly harmless STD have been used to stigmatize sex in general (70% of women will have HPV at some point in their lives.). Have the cause of putting money in to herpes cures secondary to that. Reason being that many news outlets have written stories about how herpes isn't a big deal. You're better off to direct traffic too those stories because then it will rank higher on google when some types in "herpes", which will help kill the stigma. 

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catdancer
19 hours ago, SupermansJustice said:

https://archpedi.jamanetwork.com/article.aspx?doi=10.1001/jamapediatrics.2013.459 - Dr. Anna Wald on routine testing (agrees with our point and our letter).  We aren't the only ones saying routine screening for HSV should exist. Even one of the world's leading infectious disease experts and well-respected HSV researchers says that routine testing is a good idea. See quote below:

We are in good company.  Very good company.

Terri Warren, our best clinician, now retired, also agrees, and has expressed a beef with the umbrella organization for OB/Gyns (whose name now escapes me). Pregnant mothers who contract HSV in the third trimester of their term don't have the antibodies yet to pass on in the womb, and are at very real risk for passing the virus on to their newborns.

Edited by catdancer

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catdancer

The two vaccines in investigation at Yeshiva University and UPenn that you linked look legit and promising!

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fixme1
1 hour ago, hitkid said:

Alright, so I don't want to tell you guys what to do, but I think you're going about this wrong. Yeah twitter can be used, but you're much better off using Reddit. It's easier to manipulate things to the front page then you believe. If you get a 100 people to upvote your post with in an hour on something like r/videos, or r/todayilearned with a catchy title: "TIL the herpes virus stigma was created by such and such pharma to peddle new medicine. Before that no one cared.", or "Adam ruins herpes" you have a better chance. 

Also, don't reach out to the Bill and Melinda gates foundation. Bill Gates has criticized the west for spending money on small diseases like herpes that don't do much to save third world countries where no one gives a shit about herpes. Your best bet is to get a celebrity endorsed hashtag going, which I'm sure if you reached out to Adam Conover, from Adam Ruins Everything, he would help you out if you had enough support building. Also try and get into contact with  Buzzfeed, Vice, and maybe even the Huffpost. Link to a place where people can anonymously donate to a reputable place and you'd have better luck.

Also you should focus the strategy around how mostly harmless STD have been used to stigmatize sex in general (70% of women will have HPV at some point in their lives.). Have the cause of putting money in to herpes cures secondary to that. Reason being that many news outlets have written stories about how herpes isn't a big deal. You're better off to direct traffic too those stories because then it will rank higher on google when some types in "herpes", which will help kill the stigma. 

we should get a massive group of users from here to post in a t hread made on reddit and trey gets in popularity up, reddit definatly gets alot of attention of people over twitter. especially when there will be 1000's of lurkers to jump on it and give there storys on hsv, maby giving everyones own views and experiances in one big thread would drive it to get noticed to bigger people

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tekrope90

Ive never used reddit really, but im willing to join in and help with the cause. Thanks for being a role model and standing up. Hopefully more people will join in.

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tekrope90

how do you find your thread? i clicked the link but cant find it.

 

edit. nvm i got it.

Edited by tekrope90

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Miha
Quote

Also, don't reach out to the Bill and Melinda gates foundation. Bill Gates has criticized the west for spending money on small diseases like herpes that don't do much to save third world countries where no one gives a shit about herpes.

Im sure Bill doesn't has herpes in his pants every other month, or twice a month, Okay? He more likely has money in his pants, but not herpes probably. I think people and doctors etc, who say that Herpes in no big deal and its a "small" disease, are short sight. I cant blame them, its just in people's ignorant side of nature: People will NEVER EVER understand something they haven't really experienced on them selves or lived through. 

First of all, Herpes significantly increases chances of transmitting dangerous diseases such as HIV(and not only STD, anything that can be easily transmitted trough body fluids) through affected skin. And there can be many various manifestations and complications (not only skin related) of herpes in long term. Everything in our bodies is connected. And also everything in this universe is connected, we cant just focus on BIG issues and leave out SMALL ones, because every little detail matter. Finding a cure for herpes (and you all know its not an easy target, which makes the grand prize for solving this mystery even more valuable) could open up new possibilities and methods that could be applied to future medical and biology researches. If we want to expand as a civilization we need to pay attention to everything. So im really surprised hearing that Bill "criticize herpes research".

So they say Herpes wont kill you, but you all know that LIFE is much harder than DEATH, always!
Doctors say:  "Its fine, just EAT VALTREX and extra herpes pills, destroy your organs, and the symptoms will miraculously go away! *MAGIC! <3 sarcasm* Oh also, because of asymptomatic shedding, you have to use condoms your whole life even with your wife/husband in case of discordant couple. Goodbye close intimacy experience with your loved ones. *HOW NICE, bind to latex for life! again sarcasm...* Oh! and by the way,  usually 30-180 days in a year it will burn, sore and itch on your privets or up in your bum, or on your lips, mouth or eyes depending on area affected. And it can give headaches and stuff *Great! That's just what everybody wants, no big deal!* More than that, herpes known being able to affect just any skin surface, so wash your hands if you touch sores. *Bravo*

And then there's that Stigma, which i think is just dump, annoying and stupid "stone age" way of thinking. I just don't understand people who put that stigma upon suffering people. I truly don't understand STD STIGMAS overall. This is not kinder garden, we all know people need to have sex, that's only a natural need. I don't think that those smart ass people who judge other people with that stigma, are saints or monks that never have sex. No more comments on this one.

And people often underestimate influence of mental and emotional states. Because we humans are made of mentality and emotion. Being human is not just having a human body (some people have human body but act like total animals). Being human, means being human in our heads and in our hearts. Those, who don't have Herpes, especially genital one, they will NEVER EVER understand: that feeling when you first diagnosed with that "small" disease called Herpes; that feeling when you go home and realize that your life turning upside down with a sudden changes happening to the world crumbling in your head; that feeling when you feel fear of transmitting an incurable disease to loved ones; that feeling when someone reject you because of it; and theres more to that! Many people live their lives trough those emotions everyday. And people still say its no big deal... They can only try to imagine, but they will never really know how it feels.

Edited by Miha

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Whyyyyy
8 minutes ago, Miha said:

Im sure Bill doesn't has herpes in his pants every other month, or twice a month, Okay? I think people and doctors etc, who say that Herpes in no big deal and its a "small" disease, are short sight. I cant blame them, its just in people's ignorant side of nature: People will NEVER EVER understand something they haven't really experienced on them selves or lived through. 

First of all, Herpes significantly increases chances of transmitting dangerous diseases such as HIV(and not only STD, anything that can be easily transmitted trough body fluids) through affected skin. And there can be many various manifestations and complications (not only skin related) of herpes in long term. Everything in our bodies is connected. And also everything in this universe is connected, we can just focus on BIG issues and leave out SMALL ones, because every little detail matter. Finding a cure for herpes (and you all know its not an easy target, which makes the grand prize for solving this mystery even more valuable) could open up new possibilities and methods that could be applied to future medical researches. So im really surprised hearing that Bill "criticize herpes research".

So they say Herpes wont kill you, but you all know that LIFE is much harder than DEATH, always!
Doctors say:  "Its fine, just EAT VALTREX and extra herpes pills, destroy your organs, and the symptoms will miraculously go away! *MAGIC! <3 sarcasm* Oh also, because of asymptomatic shedding, you have to use condoms your whole life even with your wife/husband in case of discordant couple. *HOW NICE, bind to latex for life! again sarcasm...* Oh! and by the way,  usually 30-180 days in a year it will burn, sore and itch on your privets or up in your bum, or on your lips, mouth or eyes depending on area affected. *Great! That's just what everybody wants, no big deal!* More than that, herpes known being able to affect just any skin surface, so wash your hands if you touch sores. *Bravo*

And then there's that Stigma, which i think is just dump, annoying and stupid "stone age" way of thinking. I just don't understand people who put that stigma upon suffering people. No comments on this one.

And people often underestimate influence of mental and emotional states. Those, who don't have Herpes, especially genital one, they will NEVER EVER understand: that feeling when you first diagnosed with that "small" disease called Herpes; that feeling when you go home and realize that your life turning upside down with a sudden changes happening to the world crumbling in your head; that feeling when you feel fear of transmitting an incurable disease to loved ones; that feeling when someone reject you because of it. Many people live their lives trough those emotions everyday. And people still say its no big deal... They can only try to imagine, but they will never really know how it feels.

Send this to doctors, scientists, let @SupermansJustice post it on twitter? This is very real and you make great points!

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Miha
Quote

Send this to doctors, scientists, let @SupermansJustice post it on twitter? This is very real and you make great points!

Thank you. With pleasure! We need to spread the message. I am not afraid of Stigma and disclosing myself or anything.

Please copy my original thread, as i just edited it correcting some grammar mistakes and add some extra points.

Sorry, English is not my native language :|

Edited by Miha

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Miha
22 minutes ago, SupermansJustice said:

 

I invite you to join twitter and support this movement. 

 

Id like to! I got twitter, but i don't have any followers or anything big yet... so don't know if Im much help.

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medicalanonymo

What's your favourite std, and a follow up question, why is it your favourite?

 
 

[–]AAAS-AMAAAAS AMA Guest[S] 20 points 8 hours ago 

Christine Johnston (CJ) From a research standpoint, personal favorite STD is genital herpes (both HSV-1 and HSV-2). The virus causes many recurrences in some people but is very mild in most, and trying to figure out why the differences exist is really fascinating - is it the virus, the host, or both? From a social standpoint it is also interesting to think about why this infection has so much stigma associated with it, as many have already noted, particularly since it is such a common infection!

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