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We from the EU can do something as well!!!

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Okay, I see that forum members from the US are trying their best to speed up herpes research, which brings me to a question: what are we in the EU doing about it?

I believe that just like our friends from the US, we from the EU also have a broad range of possibilities. Have you thought about it?

1. Besides writing letters to the national ministries of health there is also the EU Commissioner for Health and the EU Commisioner fo Science and Research! We can write them about herpes, about how it affects the lives of millions and millions of people and that something should be done about this.

2. The European Parliament members don't spend their entire time in Brussels or Strasbourg. They also have offices in their respective countries. If we pay a visit to our European Parliament MPs, they might be able to raise issue of herpes research and protection on the soil of the European Parliament, thus persuading it to issue some kind of ordinance/law valid throughout the entire European Union!

The EU basically has the power to issue laws valid in all member states. If you take a look at the money the EU wastes every year on nonsense issues (!!!), I think that we might have a chance of the EU allocating funds on herpes-related issues, which are far more useful! Remember, how last year they didn't know what to do with money, so they spent it on low-priority projects across the EU?

Now what can we achieve on the EU level?

1. By visiting our European MPs we can achieve that the herpes issue can be heard on the soil of the European Parliament. I am nearly sure, that most of the European MPs have no clue about herpes. If we presented them with facts about this disease, I believe that the wouldn't stay idle. The knowledge about herpes is not very widespread these days and is basically limited to the infected persons, who do not "dare" to talk about it in public, fearing rejection. By bringing the issue of herpes to the European parliament and informing the MPs we might increase the willingness of the EU parliament to approve the allocation of funds for herpes research, as well as for pan-EU information campaign about herpes to inform the public about this disease.

2. By writing letters to (or possibly even meeting) the EU Commissioner of Health we might stimulate her (currently, the EU Commissioner of Health is Androulla Vassiliou from Cyprus) at least to initiate activities, which could increase public awareness about herpes. These days even many doctors seem to know a little about herpes (according to my experience) and they say, that herpes is not a big issue! This is alarming! I believe that if the EU Commission would launch a herpes information campaing, it would increase the EU inhabitants' knowledge about the disease, as well as their interest to do something about it.

3. By writing letters to (or possibly even meeting) the EU Commissioner of Science and research, we might persuade him to allocate funds on herpes research. Hundreds of millions of euros are being wasted each year. If a couple of millions are allocated to herpes research, it could help. If herpes researchers like Dr. Bloom or Dr. Duke are having problems with funding in the US, we might encourage them to finish their research in Europe for EU money!!! There are also many wealthy European pharmaceutical companies... If they would be willing to start producing the herpes vaccine, that would be wonderful news (friends from the US, don't worry - I'm sure the vaccine would be also available in the USA very quickly, as the US market is the main target for European companies in general).

The EU institutions are actually able to regulate the economic life of the member states, as the successful EU direction, which made the cell-phone companies decrease the prices for roaming within the EU.

We can, however, do many things on the national level as well:

We can see our MPs and inform them about herpes. We can have them raise this issue on national parliament. Actually, I am thinking of meeting the senator for my electoral district to talk about herpes and about what can be done in the Senate of my country. I might write the representatives as well (my country has a bicameral parliament).

What I am going to do:

1. Write e-mails to the European Commission.

2. Meet my EU Parliament MP.

3. Meet the senator for my electoral district.

4. Write e-mails to the minister of health of my country.

5. Possibly meet some of the representatives of the Chamber of representatives of my country.

6. Do a small research about European pharmaceutical companies, medicaments that they produce and their financial situation. I am going to post here the list of companies, which might be interested the most.

Are there forum members from the EU, that would be willing to join me. If yes, please don't be shy and contact me, so that we could coordinate our activities. I've noticed some forum members for the UK and Netherlands here. Even if you might not be the fan of EU integration, please join me, as it would be effective.

Also a question to forum members from the US and other parts of the world: what do you think about this initiave?

If anyone of you has any further ideas of what can we do to speed up the process of finding a herpes cure?

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It's great,I do think that the Euopean medical science is on the top edge of modern science.There are many excellent scientist and researcher in Europea. Look at the number of people of taking Nobel prize in EU!

So it will be a great opportunity to accelerate the cure research.

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For a start

I wrote the following e-mail to the Swedish Minister of health, Mr. Göran Hägglund. Sweden is currently holding the presidency of the EU, which means that the Swedish government influences the agenda of the EU for the next several months. On the website they say, that all e-mails are being read, but the time it will take to answer them depends on the workload. As soon as I receive an answer, I will post it here. I could have formulated some thoughts a bit better though, but as Julius Caesar once said, alea iacta est (the dices are thrown).

The e-mail:


Dear Mr. Minister,

I would like to turn your attention to herpes simplex, an infectious disease which complicates the lives of dozens millions of Europeans every year. There are two main types of herpes simplex:

Herpes simplex labialis (HSV-1), which primarily affects mouth (thus causing outbreaks of cold sores), but can be also spread to the genitals through oral sex, or to the eyes, causing occular herpes (also known as keratitis), which can lead to blindness.

Herpes simplex genitalis (HSV-2) on the other hand affects mainly genitals, but can be spread to the mouth area through oral sex.

Herpes simplex leads to recurrent outbreaks, characterized by ulcers and itching/burning sensation appearing on the infected area and causing severe discomfort to the infected person. Herpes simplex is one of the most widespread and at the same time most underestimated sexually transmitted diseases (STDs) and can be transmitted even when no outbreaks are visible. Statistics for European countries are not available, but according to some estimates the up to 113 million people in the EU countries alone have genital herpes, which means that the disease is affecting the lives of more than one fifth of Europeans.

Even though herpes simplex is generally not considered to be a life-threatening condition, it is the source of constant discomfort for dozens of millions of Europeans. Being infected with genital herpes also has severe psychological impacts, as people infected with the herpes simplex virus are often experiencing problems finding partners.

Currently there is no cure for this disease, meaning that once a person is infected with herpes simplex, that person is likely to suffer from herpes for the rest of his/her life (this is due to the fact, that the virus hides in the nervous system cells, where it is difficult to access). The only medicaments available for herpes only temporarily alleviate the symptoms, but they do not cure the disease. There are researchers in the EU and some other countries, that are currently working on a herpes therapeutic vaccine, but lack the funding and support to complete their research. I would hereby like to ask you on behalf of dozens of millions of EU citizens (including myself), what measures can the European Union take to help those people?

I would be very grateful, if you could send me a reply.

Yours sincerely,


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  • The Hive is Thriving!

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    • TCBH
      You don't put it down there. you put it on your arm. 
    • luvurself16
      I got hsv from a police officer. Sickos out there.
    • Toro
      I am 44 and I have active herpes in both of my eyes.Only Amenalief helps.
    • Jayne
      I know this thread is a couple of years old, but it’s been helpful to me, and I wanted to contribute as well. Back to Berliner’s original post, I’ve tested negative on several IGGs, with the latest ones being 1 yr and now almost 2 years past exposure.  Figuring out what was going on was the worst nightmare I’ve ever been through in my life. I made the mistake of drinking heavily a week after my father died of cancer, and I had unprotected AS with an ex, who happened to be poly and had some occasional unprotected M2M encounters.   Three days later I had a red line rash along my (sorry to get explicit) crack. This was followed by a rectal burning. Tested negative for G&C and related tests.  Over the next couple of weeks I had severe swelling and discomfort in my lower right quadrant and was told to go to the ER, where (I guess as a standard practice) they did a cat scan, which revealed nothing.  Also not a bacterial infection.  However the repeated manual examinations that occurred at urgent care and the ER seemed to relieve the abdominal pressure over the next few days.  I then had diarrhea for the next several weeks after.  I developed what felt like internal hemorrhoids, which were exacerbated by the diarrhea, and a gastro doctor confirmed via digital exam that there was indeed some sort of mass that felt like possible hemorrhoids. He ordered a sigmoidoscopy, but by the time it was undertaken, whatever was there was gone. After the procedure though, I felt much better for a while, possibly due to digestive issues clearing up after the colon “cleanse.” But this was concurrent with other issues.   About 3 weeks after the encounter I developed a large rash on my left thigh. Shortly thereafter I started having light sensitivity issues, culminating in a fever-like state after being outside in the sun only for 15 minutes after work. At work around that time for a couple days I felt like I was going through life encased in a gauzy gel- similar to being on laughing gas at the dentist, but not in a good way. I didn’t know what the hell was happening to me. I developed a severe case of canker sores for about a day. Later during a sunny drive, after getting back in the car at a gas station I noticed a red blotch below my lip. I tried to shrug it off but it happened again on the trip back.  So by about a month after the encounter I was having more anxiety. I spent the night at a friend’s house and woke up with a massive, swollen red eye and swollen lips. I got eye drops for bacterial conjunctivitis but that was wishful thinking.  A couple of weeks later, my lips were covered in sores. I smothered them with abreva. By the next day, they had mostly gone away. I tried to do a swab test at urgent care (I believe it was the next day), but there was not enough there to make any sort of positive diagnosis. Since then, I’ve had what you could call repeated aborted lesions and red blotches that appear around my mouth, particularly after stress and alcohol consumption. But even having peanut butter or chocolate would set it off for a long time. Fair skin doesn’t help- there was no hiding it. Two months after the encounter, I had my first vaginal burning- it was pretty intense and I had to use ice cubes because I didn’t know what else to do.   The worse feeling though was the periodic flare-ups of rectal itching/burning, often accompanied by another red line rash. It made sitting uncomfortable for about the next two months. I couldn’t wear pants at work- only skirts seemed to make things somewhat less irritated. And for the first three months, I was still testing for HIV along with HSV because of the overlapping symptoms (rash, diarrhea, neural pain, severe flu like symptoms without fever). I lost a lot of weight and had panic attacks. On top of all this I had just moved to a new city and started a new job and didn’t have a support network. And the sad thing is, I had to deal with all of this instead of being able to grieve for my father and being a better source of support to my mother. She had to support me without understanding what was happening.   Another bad thing through all of this was having both my ex and my current partner treat me like I’m crazy. That makes me feel alone and in the dark. Another “hysterical woman.” F*** that.  And while I felt grateful that my current was at the time still ready to be with me even if I had hsv, it’s a little discomfiting that he still doesn’t really believe me. But I’ve learned to live with ambiguity. And now I’m used to doctors as well as partners acting like this is nonexistent. Especially with negative IGG tests even 2 years later, which have left me without any answers.  I’m lucky in a way to be able to blend in because I don’t get obvious sores, genitally or orally (I can cover up the blotches with concealer, and they fortunately have lessened in frequency). But I still get the rectal itching/burning every six months or so (anthistamines seem to alleviate it a bit). And as more of a concern, I’ve had a cramp in my lower right quadrant ever since, which feels like it’s in my digestive tract. Since this has pretty much spread everywhere else in my body, intestinal involvement wouldn’t surprise me, and it isn’t unheard of anyways. I’ve tried to move past this and have since gotten married to my partner, who is a source of support (even if he doesn’t believe I’m having health problems. I know that’s a contradiction but occasionally I want to believe that too.).  I’m also newly pregnant, and symptoms have started to flare up again somewhat. I’m sure this will be an adventure. Hopefully more good than crazy. I know I’m going to struggle with the fear of passing this along but I’m trying to reconcile what doctors say (which is that it is extremely rare) with my own intuition about what I need to be careful of. Maybe I’ll repost with an update down the road. In short, there are people out there who test negative and have to live with loved ones and doctors thinking that a negative test closes the book on this. Again, learning to live with ambiguity is a real life lesson that I’m still coming to grips with. This forum and specifically this post have been a source of comfort that I haven’t been able to find elsewhere. Thanks everyone for the support for the community.     
    • Rockster
      You deepthroat so good that you get all kinds of mouth-to-skin-of-base contact? Kudos to you, but that is extremely rare. 

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