The CDC's "Reasons" For Not Testing ... Straight From The Horses ... er... Asses ... Mouth :(

[mr_hopp]

TO OUR COMMUNITY ...

 

I offer this message from love and dedication to this forum continuing to be a safe and healing space for all of us. How are each and every one of us contributing to that safety and healing? It doesn't land on any one of us. Not on me. Not on Dancer. Not on any one of you. It is something for all of us to share responsibility for.

 

See this as a beautiful reminder of what we are all standing for here.

 

As individuals and as a community, let's notice when our posts (whether it's an original post or a reply to someone else) are coming from anger and fear that could hurt others vs. coming from support, compassion and openness. It is each of our choices to respond from respect and compassion or to react from anger and fear. Notice your intention behind your message. And find the kind intention behind any reaction. Choose to respond instead of react. Very important distinction.

 

There is a lot of pain on these forums. In each of our hearts. And there is also a lot of love. And the only way to heal pain is to create a space of safety where love can flourish. Each of us came to this forum to be supported and feel safe. Can each of us choose to support and help create safety, too?

 

Attack and lashing out has these forums feeling unsafe to me.

 

And I won't stand for that.

 

I created these forums to be a space of safety and deep healing.

 

And that is what these forums will always be.

 

This space we are all creating TOGETHER is magical.

 

And I need all of your help to support that vision.

 

Let's all take responsibility for our own triggers around these things and strive to be respectful of other opinions and offerings. We are a community who supports one another. Period. Even if we don't agree with something someone has to offer, can we still engage with one another with compassion and support? This is what I'm asking each and every one of us to do. I trust all of our hearts. And I feel protective over this community when negativity and arguments occur. Arguments come from us going unconscious and following our reactions and triggers. Mutual support comes from consciousness and standing for something bigger. Together. Healing. Love. Compassion.

 

This is an Opportunity for all of us as a community to level up with consciousness and awareness over the impact we each have on one another and as a community as a whole.

 

I ask that all of us take this on in service of our supportive and healing community.

 

And please help me spread the vision in any other forum threads here. We are all taking a stand for one another. To link to this in any other discussions where anger and arguments becomes the mode of communication, please copy and paste this link (which links to this that you're reading right now) as a gentle, loving reminder of what we are all about here.

http://herpeslife.com/herpes-forum/discussion/comment/23476#Comment_23476

[seeker]

What he said

[ihaveittoo]

@cityofangels

 

Thank you for your posts, I found them very interesting. As a 27 year veteran of herpes I came to the realization many years ago that it will probably never be cured during my lifetime. When I finally accepted and came to terms with that, my outlook on the future improved immensely. Herpes no longer causes me any depression. I can live and love just as much as the next hsv- person.

 

As @WCSDancer2010 said in her last post, your posts were dealing with the reality of the medical world in regards to herpes. It can take time for the newly diagnosed to come to terms with the reality of it. I know it took nearly a decade in my case. Thank God for the internet, it makes networking with people with common interests so much easier.

 

Since herpes doesn't kill people like HIV the powers that be are never really going to be motivated enough to make a huge deal out of it. It is going to come down to individuals like us to get the word out as far as education goes. This web site is a fabulous resource. Between this web site and his YouTube videos Adrial is doing the lords work. Throw in Dancers blog and incredible patience and dedication in this forum, we are off to a great start. There are many regulars to this forum who contribute their experience and knowledge to others.

 

My guess is that there are more people than we'll ever know lurking in this forum reading and learning. Learning accurate facts. Learning they are not alone. Using what they learn here in their daily lives.

[WCSDancer2010]

Well folks, you done gone and inspired me to write another blog post....

 

http://supporttruthanddialog.com/triggers-as-learning-tools-for-life/

[riverstyx]

@Theo1824

 

Alright, now I'm going to add MY view. My situation is different than CityofAngel's, because unlike him I went through an actual herpes scare this past summer when I received not one, but two false-positives that took three months to clear up with yet more testing (Western Blot, and yet another Immunoblot). But now that I and my doctors know beyond a shadow of a doubt that I don't have h, does this mean I shouldn't come on the forum anymore? That I'm not welcome? That "ok, thank you, you're done, now move on" is going to be the attitude?

 

@Theo1824, I understand that CityofAngels comments are discouraging, but your comment in response to him/her was an absolute disgrace. You showed a complete inability to discern the context and meaning behind your own feelings: was what you were feeling based on anything legitimate other than an intolerance of CityofAngel's different opinion? Did you question whether you might actually need to feel the things you were feeling in order to get to the greater truth, whatever it happens to be? No, you didn't. And I don't think anybody was fooled by you saying you meant your comments "in the nicest way possible" to CityofAngels, because we all knew your intention: to make CityofAngels feel unwanted and unwelcome, and that is a BAD intention. And that you can't cover up.

 

I'm no scientist, but I study philosophy. @Theo1824, I strongly suggest you read J.S. Mill's "On Liberty," which talks about the virtues of rigorous argument and the NECESSITY of hearing opposing viewpoints and objections if we are to find the truth in our own views. What he said was true in the 19th century. And it seems that for at least one person (you), it needs to be true here in the 21st century.

 

 

[Vanguard1]

No need for hypocracy. How can you claim that Theo1824's statement was an absolute disgrace when you're willfully doing the same thing so far after the fact that you have ample time to reflect and consider your response away from any emotion and frustration stemming from a real time conversation from the thread yesterday? To claim that there is a NECESSITY for hearing opposing viewpoints when that said viewpoint is from somebody that can not simply relate on an emotional level is a farce. More to the point, to slam someone for speaking freely and honestly about about the absurd and antiquated approach the CDC is taking on this issue contradicts your whole argument of the virtue and truth from an open dialogue of opposing viewpoints.

[riverstyx]

Oh, so you defend theo's right to question CityofAngels with the intention of making him or her feel bad about their contributions to the forum, just because she "doesn't like" what he has to say? I will always and everywhere speak against that crap. And by the way, it was theo's CHOICE whether to respond yesterday. Nobody made her go on the forum to respond to CityofAngels. She CHOSE to make a veiled mean spirited attack on CityofAngels with the intention of driving him off this forum, and that's exactly what she did. It is one thing to disagree with somebody. It is another to make them feel bad for well intentioned comments, like they was doing. CityofAngels didn't slam anybody, he was speaking the truth as he knows it as a doctor, which the is not, and you sure aren't either. And theo didn't have any viewpoint on any issue: she just said what she said to try to get CityofAngels off of here, and that's exactly what she managed to do. Is that just? Is that fair? And since when does anybody other that Adrial have the right to say who gets to stay on this forum? Now am I going to be politely questioned as to why I'm here because some people judge my time is up? Exactly what viewpoint was then offering in her comments? I would really like to know, I would like to hear it......because I seem to have missed it.

[forgivenessandpeace]

Uhm, what are we talking about? Is Theo being chased from the forum now? Gosh peeps.

 

Back to the subject at hand, @riverstyx you were the recipient of false positives so I'm curious about your perspective, especially since you've been on the forum and you've read the experience of the many people who contracted the virus from unknowing or undisclosing partners. How do you feel about the CDCs position that false positives can evoke "adverse psychological effects of contracting this lifelong uncurable infection"?

[Beachdude1984]

Forgiveness and peace, their position makes sense because if someone were to receive a false positive, what is the possibility that he/she were uneducated about this result and lacked the understanding to pursue follow up testing? Now you have individuals living life believing they have herpes when in fact they do not. FWIW, I agree with the CDCs position on testing. I can relate to the sentiment many people here feel about universal testing lessening stigma ("it's not fair that I know I have herpes, but most people don't know and get to live normal lives"). But really, what good would universal testing do? It should be somewhat of a consolation that the CDC considers herpes so insignificant that they recommend against testing. Bottom line is the medical community takes a reactive approach to herpes rather than proactive, for psychosocial reasons and because of a lack of effective treatments. When we eventually get a prophylactic vaccine I believe you will see the medical community change it's approach to herpes.

[WCSDancer2010]

Folks, PLEASE go and read my blog that I posted above.... I'm seeing emotion all over here ..... so for now I'm asking you to go to your corners and cool down.

 

Or to paraphrase my mother:

 

Don't make me get Adrial in here!

[riverstyx]

I don't know how I feel about it, forgivenessandpeace, I mean, yes, I did have two false positives, but I don't know how frequent or rare that is. If it is rare, then I say more testing would probably help things because the CDC is unwittingly reinforcing the stigma by telling everybody to bury their heads in the sand. Now, that's just my opinion. To me, as an h- person, dating an h+ person is no big deal. But I guess different people process things differently. Both CityofAngels and beach dude make completely valid points, however. Let's just hope beachdude's motives aren't now questioned because he happens to be espousing an "alternative" view....

[WCSDancer2010]

@Beachdude

 

their position makes sense because if someone were to receive a false positive, what is the possibility that he/she were uneducated about this result and lacked the understanding to pursue follow up testing? Now you have individuals living life believing they have herpes when in fact they do not.

 

Welll, hows about they just admit (and TELL people) that anything between 1.1 and 3.5 *may* be a false positive, ADVISE them to get retested in a few months, and it up with the Western Blot as protocol if it's still in that range. Seems a logical way to deal with it... there are other test out there that they do every day that have questionable results and they just retest or go to a better test if in doubt :/

 

@riverstyx

 

False positives occur about 40% of the time in the 1.1-3.5 range ... I'm guessing that half will go on to be positive because they tested too early ... but if the person was doing a random test, odds are there numbers won't change much unless they just engaged in sex in the 3 month time slot...

[riverstyx]

@WCSDancer2010

 

I read on www.medhelp.org *all the time* about people who received low-positives that turned out to be false-positives. Of course, the manufacturer of the test does not wish to change the definitions of "positive," "negative," and "equivocal" for the test. *I really think* that if enough people got together--I'm talking about a few hundred--and sued the manufacturer for many, many millions of dollars in damages due to emotional distress, *that* would motivate them to change the values and invest the necessary resources to make an effective change.

[forgivenessandpeace]

I don't understand why health care providers don't counsel people better. Why do they even call a test result under 3.5 positive? Why don't they just say "inconclusive" or "compromised" when this happens and retest?

 

Also, there is the question of people who test h+ but have NEVER had an outbreak. Are they contagious? Ever? It's exasperating how little accurate info we have.

[WCSDancer2010]

I agree that they need to change how the providers deal with the results ... and @riverstyx, you may be onto something .... and given that you were affected, it *may* be worthwhile to talk to a lawyer that deals with class action lawsuits ;)

 

@F&P ...yes the people who ARE H+ but never had an OB can still shed the virus ... the CDC reckons the majority of new cases are during asymptomatic shedding.... and we get plenty of people on here who got it from someone who had NO idea that they were H+ :(

[LottaWotnot]

Hey there, don't mean to stir this back up, but the CDC's comments on why they recommend against testing really irk me: http://www.cdc.gov/std/tg2015/screening-recommendations.htm

 

(so much I wrote a strongly worded letter to the CDC director of STD prevention)

 

In particular, the remarks about the psychosocial adverse reactions of serological testing have been disproven, see meta data review by Ross et al. 2011.

 

http://www.ncbi.nlm.nih.gov/pubmed/21903980

 

Summary from article:

 

"Key messages

In a systematic review of studies conducted across a variety of clinical settings we found that serological testing for HSV-2 of persons without a recognised history of genital herpes:

 

Did not result in persistent mental health problems, including anxiety, depression, or distress, or persistent changes in sexual attitude.

 

Before testing most persons anticipate an HSV-2 diagnosis to be quite severe, but after receiving a positive diagnosis patients view it as less severe.

 

Most people are interested in HSV-2 testing and do not regret being tested."

 

 

I have yet to find a convincing study demonstrating significant harm in increased testing.

[2Legit2Quit]

IMHO, I think it's the CDC in cahoots w big pharma, because they make so much money off antivirals, why would they want to slow down the spread?

[WCSDancer2010]

@LottaWotnot

 

I totally agree ... and if testing were part of the issue, there would be a LOT more discussion and thus less stigma. Look at HIV ... people used to cross to the other side of the road if they saw anyone coming they knew had HIV - now all kinds of well known people are admitting they have it, people are getting married and having babies, and in a way HIV has less "stigma" attached to it.

 

http://www.ctvnews.ca/health/it-ends-with-me-man-with-hiv-shares-stigma-busting-family-photo-1.2383765

 

I would argue that their IS a lot of mental anguish with testing, but only because many *thought* they had been tested all along and when they find out they were not and may have had it awhile and thus unknowingly passed it to others, that puts a HUGE burden of fear and shame on them and they then have to struggle about who they should contact to tell that they need to get tested.

 

I just plain don't like that they "lie by omission" when people ask for a "Full Panel" STD test and they don't do Herpes..... at least make it clear that this is not added unless you ask for it ... like disclosures, at least then the person has the CHOICE of whether they get tested or not :(

 

 

[Bambina3]

I just read bits and pieces of this thread and it is very sad...I've also run into road blocks with the cdc and testing...they way we are treated...between the stigma and the down play by the medical community is a disgrace.

[1974]

I just read through this thread and this is a great dialogue - even if there were some hurt feelings - the conversation is an important one. We all agree that the CDC is in the wrong that the doctors are largely misinformed, uneducated and dismissing of the HSV patient and the realities of living with the virus. HSV remains under funded, under researched and stigmatized mainly because of the CDC not responding to the severity and scope of HSV. The stigma and silence that surrounds this STI enables the CDC to continue to maintain their party line and do nothing about HSV. The question is where do we go from here ...there's powers in numbers and we, the people living with HSV have large, strong and growing numbers. Now the question is how do we on a grassroots level get creative and make a collective noise?

[WCSDancer2010]

Part of the issue is most people don't want to admit they have herpes - if we all spoke out at the same time, the stigma would disappear overnight. Look at HIV - the mass panic and stigma is FAR less than it was 10 yrs ago thanks to both better meds AND a lot of people speaking out.

 

I hope to do some kind of a crowdfunding campaign some day. Right now I'm dealing with my 87 yr old father who is moving in with me this Spring... so it may not be for awhile. But it's in the works.

 

The only other thing you can do is educate people yourself....but that means being ok with people knowing you have the virus. I'm 100% out and it's not affected me in any negative way - if anything it's great because I don't have to worry about people figuring out, and people come to me for info or send their friends to me... right there, the stigma is taking a good kick in the pants :)

[1974]

I agree with you being comfortable talking about the virus that you live with is incredibly important it's not an option for me at this point. I won't subject myself to that or my children and believe me I have tested the waters. What I want to see is more attention from the medical community and I want to see the CDC acting responsibly toward this virus. I want to see the doctors that are actually doing the research being funded properly. I know that there is a way to make a collective noise surrounding HSV in an anonymous way there is so much technology out there that provides a platform for just that - so much social media that we don't have to go around parading our status and subjecting ourselves to further emotial trauma - we can still make a difference and remain anonymous for now. We just have to be creative.

OK for example I was thinking what if I wrote a form letter to the CDC one that anyone could cut-and-paste and we email it to them on a daily basis - a letter that demands testing for HSV and for the CDC to recognize it as a reportable sexually-transmitted disease that deserves to be tested for and requires funded research and physician education on treating patients with HSV. What if that form letter was copied and pasted and emailed to the CDC by everyone 3 or 4 times a day and we flooded the CDC with what we want to see happen - I don't know just a thought at least it's doing something...lets get creative our health deserves real attention.

[2Legit2Quit]

I'd so that email w you

[fyrefenyx]

CDC is in cahoots with big pharm, js (gerrr)

[WCSDancer2010]

What I want to see is more attention from the medical community and I want to see the CDC acting responsibly toward this virus. I want to see the doctors that are actually doing the research being funded properly.

 

You have to understand that their priorities are for diseases that kill first, then diseases that physically maim/drastically reduce quality of life. In the grand scheme of things, Herpes is no biggie for the vast majority of the population...hell, it's asymptomatic in 80% of the population.

 

I personally feel that public education will get further than going after the CDC. Put a face on Herpes and the stigma disappears. Ella Cameron is doing a great job of starting that movement, along with myself, @Adrial, @SweetCicily, and others....

 

I hope to get an educational campaign going once I get my father sorted out (he's 87, and moving in with me in the Spring) When I'm not having to fly to Fla every 6 weeks maybe I can focus on it :)

 

If you want to try the letter campaign, it won't hurt...but my personal experience is that if people don't see a fast result they soon give up on these things.... I put out a questionnaire last year and while I got a response, it wasn't as large and I needed (If you really want to make the CDC pay attention you need to give them FACTS that they can't ignore).

 

Certainly every time someone becomes proactive and takes a stand, it chips away at the stigma..... one way or the other. So ANYTHING that you do will at least contribute to a hopefully long term positive outcome and change in the perception and stigma that surrounds Herpes :)