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How herpes got its stigma

“It is easier to fool people than to convince them that they have been fooled.” – Mark Twain

You can download a PDF of this article.

An article by Nigel Scott

For anyone in the twenty first century it is hard to believe that there was a time when ‘herpes’ was not a stigmatised and feared condition. But this is true. Less than forty years ago genital herpes was largely ignored. Newly diagnosed patients were not made to feel that a common skin condition had just ended their chance of having future relationships.  Doctors knew that they were simply dealing with the manifestation of the common facial cold sore on a different site and they treated it appropriately. In the early 1980s things changed. How and why did this happen?  

Continue reading How herpes got its stigma
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What You Get in the Autumn Magazine

Spring 2022 – Sphere magazine (16 pages in A4 print version, and the e-version is large text single column for easy reading on your phone.)

Subscribe to have it sent to you by post or by email

Each magazine has pages of research and new facts about herpes simplex treatments and herpes vaccines. In this magazine:

The HVA (that’s us) gets invited to the 100th Anniversary dinner of the British Association of Sexual Health – where we ask doctors if they share our view that antivirals should be available over the counter – rather than by prescription. We also seek their views on herpes simplex related nerve pain.

An up to date overview on in-development herpes vaccines and their types.
Cover Magazine

Shingles Awareness Week – the first of its kind. With the Shingles Support Society as our sub charity, we couldn’t ignore this!

An article on our quest for perfection and how it does us no good.

Charity challenges, a creative writing workshop, broccoli as an outbreak preventative and lots more!

Get it sent to you by post or by email

Continue reading What You Get in the Autumn Magazine

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Trial volunteers still needed

Last year, our trial volunteers took part in a scientifically run placebo-controlled, double-blind trial to see if the ‘EBDT powders’ from Vimuneco would improve their immune response so that they stopped getting outbreaks. The trial showed it had a minor effect, but the powders were very hard to use: they had to be absorbed under the tongue.

New trial

The company has reformulated the treatment as a liquid and there are still some places still available on the trial, so you can take part. You won’t know if you are using the placebo or the ‘real thing’ during the trial. But you won’t miss out as afterwards you will be offered the ‘real thing.’Vimuneco's tree

Send an email to [email protected] if you would like to take part.

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Cold Sore Paradox Exposes Absurdity of Herpes Stigma – by Anne (guest blogger)

The drop in the number of people who have caught a cold sore in childhood has led to an increase in genital herpes type 1 (and an increase in symptomatic – noticeable – cases of type 2 as well). Yet while few would view a cold sore on the lips as a problem, the exact same sore on the genitals is perceived as distressing by some. This inconsistency makes no sense. And it shines a spotlight on how ridiculous it is to spend even a moment’s thought on herpes simplex, wherever it may be.

When my first boyfriend’s cold sore on his lips was passed onto my genitals, it was definitely not the way I had imagined my first month of sexual activity to turn out. Nevertheless, I soon decided it didn’t make any sense to care about this. Even the shocking amount of disinformation and unhelpful pieces of advice I found on the internet did not change my mind. Amid all the nonsense, I also found some important bits of information that helped me dismiss the idea that I should think about this in any other way thank the way that my boyfriend thinks about the type 1 herpes on his face. Frankly, one wouldn’t think one would need an argument for that. However, remembering how desperate I was to find some lines on the obvious truth that this does not matter, let me explain anyway, for anyone needing confirmation of this self-evidence.

Firstly, the majority of people have herpes simplex, type 1. This means that they already have immunity against this virus and cannot get it on their genitals. If you have genital herpes type 1, there is a good chance your partner is immune to catching it.

Secondly, even if your partner does not yet have type 1, it makes no sense fretting over the site of your type 1. The majority of people could give someone genital herpes. If anything, they are even more likely to do so. Herpes type 1 does not like the genital region and is less likely to recur there, than when it is on the lips. Asymptomatic shedding is also lower than when on the lips, and is rare after the first year. Assuming that people have oral as well as vaginal sex, people with cold sores are more likely to give someone genital herpes type 1 than the people who know they have it on their genitals.

Knowing this, I have never felt the need to share the fact I have this wildly common virus with anyone. Doing so would have been absurd. No one ‘discloses’ that they get facial cold sores. It has not affected my relationships, or my sex life. That is not to say that you shouldn’t talk about it with a significant other if you feel like it  – but it is nonsensical to feel like you should.

As you can see, worrying about HSV-1 transmission is senseless. Beyond that, it begs the question why some people are so focused on whether or not a virus will be caught on one site rather than the other. The obsession with not getting cold sores on your genitals while being fine with them on your face is strange. Cold sores are a minor skin irritation, and I’m not sure why anyone would prefer them in one place rather than the other. The herpes stigma is ridiculous. It’s time to debunk it.

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Pointless to ask about Love Islanders’ herpes

Most people don’t know that they have genital herpes. [1]

So, asking Love Island contestants about their herpes status is pointless. Herpes is common – for most it is a minor, undiagnosed skin condition.

You can see the full page of information here.

As I was creating the media release, I found myself thinking: are the doctors advising Love Island producers so ignorant about herpes that they don’t know that most people with it are unaware of it? (We know that for people with a bad primary infection, or frequent recurrences, that this is a surprise – but it is a fact that: most don’t have anything noticeable.) If we accept that the doctors do know, then perhaps the questions they ask contestants are to protect the producers and not really to find out who has/has not got herpes:

25. Do you currently have a cold sore or genital ulcer?

26. Have you ever had cold sores or genital ulcers or been diagnosed with genital herpes?

27. Have you ever taken medication for cold sores or genital ulcers?

By asking these questions, they are performing ‘due diligence.’ The questions will pick up one person in three who has the virus, and who has been diagnosed. But it won’t pick up the two out of three with the virus who get symptoms, but these are too mild to have been diagnosed. So it will not prevent transmission from the people who don’t realise the ‘little thing’ they have on their skin is herpes.

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Herpes medication and the COVID vaccines

We are getting a lot of calls about herpes medication and the COVID vaccines. (And see lower down for the Covid vaccine and a herpes simplex outbreak.)

Short answer: go ahead and get whichever jab you are offered

Longer answer… The developer of aciclovir was seeking a medication that would target flu and cold viruses. They found an antiviral based on Caribbean sea sponges. This new compound didn’t work on flu or cold virus. It was found to only work on three herpes viruses: herpes simplex (types 1 and 2) and varicella-zoster virus (which causes chickenpox virus and shingles).

Since aciclovir and the later drugs valaciclovir (Valtrex) and famciclovir (Famvir) only target these herpes viruses, it is OK to have the herpes medication and COVID vaccines at the same time. You don’t need to tell the people at the vaccine centre that you are taking antivirals.

Since these drugs only target the three herpes viruses and don’t affect human cells you don’t need to mention antiviral drugs at all. They are very safe drugs. They don’t interact with any other drugs,

This article explains the vaccine – and how / why it works very well:

Summary: get the jab!

I have a herpes outbreak, can I have the vaccine?

Short answer: Yes you can.

Longer answer… A herpes simplex outbreak (a ‘cold sore’) is minor problem for the body to deal with. It can certainly manage to control the outbreak and deal with the new ‘flu vaccine’ that is the Covid vaccine.

It is generally said that being unwell is meant to be a trigger factor for an outbreak. This is where the names cold sores or fever blisters come from – people noticed they pop out when a person is unwell. Most interestingly we know of people who get a lot of outbreaks but no colds or flu, while people around them are getting these ‘normal’ illnesses.

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Can a person with herpes have the COVID vaccine?

It is perfectly safe. We recommend that people with herpes have the COVID vaccine – or any vaccines offered. Do the best for yourself, get yourself protected against COVID: a serious, life-threatening virus. The vaccines approved for use in UK do not contain egg or any other animal products. Like the antiviral drugs for herpes, all the vaccines are safe for any religious group.

“Having had herpes is not a contraindication for COVID vaccination. As most of the population have been infected with herpes type one or type 2 if there were any complication, we would have seen it by now. There is no scientific basis for thinking there would be any problem. Indeed, I had my first Covid jab yesterday. My past history of oral herpes type one (‘cold sores’) did not concern me. Professor Colm O’Mahony MD. FRCP. BSc. DipVen.

Because ‘everyone’ has herpes they can have the COVID vaccine.

Well over half the adult population has herpes simplex, though most don’t know it. The NHS wants everyone, regardless of whether or not they get cold sores on face, fingers or genitals to be vaccinated. Take advantage of these medical breakthroughs. They have been subjected to meticulously conducted clinical trials. Such clinical trials are essential to test the safety and effectiveness of experimental treatments and vaccines. (I’ve just received either a vaccine or a salt water injection. I’m taking part in a trial for Novovax.)

After a promising therapy is developed in a lab, it goes through three separate studies to ensure that it won’t cause any serious harm and will be of real medical benefit. Only if it passes all three stages is any new therapy evaluated by a group of independent experts. They assess if it’s safe and effective and can receive a licence for use in the general public. The Novovax vaccine is now on the verge of such approval.

Marian is taking part in a COVID vaccine trial

By the time I joined the trial, the study was already in its final ‘phase 3’ research involving over 15,203 volunteers recruited in record time. The participants were divided at random into two equal groups. Researchers made sure the composition of the groups was comparable in terms of age, gender, race and underlying health conditions. One group received the experimental vaccine and the other a placebo. (A dummy therapy, in this case salt water). Rates of side effects and COVID were then compared between the two groups. At the outset, the researchers set strict criteria to ensure that the new treatment really if safe and works. This is so that they couldn’t be accused of moving the goal posts if their study flings up some unexpected or unwelcome findings.

If you are a person with herpes have the COVID vaccine – where it is the one from Oxford/Astra Zenaca, Pfizer/BioNTech, Moderna or, when it is available, “my” Novovax vaccine!

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My experience with HSV1

Maria (not our director Marian) sends us “My experience with HSV1” in the hopes it will help people:

I was diagnosed with herpes simplex type 1 on my vulva in early 2012 when I was 23 years old. I had an inflamed lump ‘down below’ and I went to see my local nurse who in turn referred me to a sexual health clinic in London. They reassured me that it did not ‘look like herpes’ and they swabbed the affected area. Ten days later I got a call to say that I had tested positive for herpes simplex type 1.

I immediately thought my life was over despite the girl on the phone being very reassuring telling me that it was “just the cold sore virus.” She sensed my apprehension and invited me in for a chat. Of course, in my frantic state I searched the internet looking for something that could give me more reassurance. There was little to be found other than how to “disclose” to a partner.

To this day the word disclose really irritates me. Nobody “discloses” cold sores when they are on the face. I actually ended up in my situation because of a harmless cold sore.

I met someone

When I met my now fiancé, I casually asked him did he get cold sores on his face. I felt relieved when he said he did from time to time. I was a year going out with him before I told him where exactly my cold sore had been. Why? Because medically he didn’t need to know and quite frankly, it was not his or anyone’s business where on my body I had hsv1. When I did tell him its location, he honestly didn’t bat an eyelid.

To confirm this approach was okay I spoke to an infectious disease consultant who said it was perfectly acceptable to tell a partner you have the cold sore virus in your system. There is no need to go into specifics. [Editor: there is no requirement to talk about any STI or HIV, unless the other person asks you about these. It is not a legal requirement to offer the information.] I have never had another outbreak apart from my initial one. And that really was only minor.

This is something I feel very strongly about. It breaks my heart that I spent so much time feeling guilty and ashamed just because by the grace of God this virus happened to be on my vulva instead of my lips. I didn’t do anything wrong. All I did was experience having oral sex and there aren’t too many people out there who haven’t done that. According to WHO “In 2016, an estimated 3.7 billion peopled under the age of 50, or 67% of the population, had HSV-1 infection (oral or genital).”

There are more people with this virus than without. I am sick of sensationalism in the news. It’s not fair on people and it needs to stop. It is time for people to get the facts. This should not be a burden when in fact it’s a part of life that happens to most of us whether we know about it or not. As a society we have broken stigmas in the past. It can be done again.

Editor adds: Maria’s experience of HSV1 is common. You could say that type 1 doesn’t “like” the genital region, because it rarely recurs there. You can see transmission details for oral sex here.

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Telling doctors about herpes

Our patron, Professor Simon Barton, was asked to do a short talk telling doctors about genital herpes, for a conference in Bucharest. Or really, he was asked to record a short video for the IUSTI virtual conference (about 700 delegates in 46 countries). He invited Marian Nicholson, our director, and Ceri Evans, the senior health adviser from Hammersmith, to join him for this ‘lecture’. He took as the topic: how we support patients in UK. (Recording no longer available… Sorry! But we will have something new soon.)

Marian Ceri and Simon record a video for IUSTI


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Does anyone else feel guilty for having herpes?

Don’t beat yourself up for having caught genital herpes.

I was talking to a woman on the helpline. She said felt guilty for having herpes. She told me that she was metaphorically beating herself up for catching it. At a young age – and via sex she didn’t want anyway – she found she had caught this. (In fact, she was 19 – young for some, not for others.) She said that she had had more relationships, but they never lasted long, although the men concerned reassured her that it was not to do with her herpes.  Now she felt that having genital herpes was a punishment… She added that she was depressed as well. 

This is what I told her, during the course of the conversation: 

By the age of 15 one third of humans have at least one herpes simplex virus – having it ‘young’ is quite normal. Obviously, at this age most of these cases will be facial cold sores and perhaps surprisingly only 1 in three people are even aware they have it. (Two out of three have such mild symptoms, that they are not diagnosed.)

According to a study published in the British Medical Journal, some people think they started having sex too soon –  although 60% of women and 75% of men think the time was about right. Some people catch herpes from their first sexual partner, regardless of whether this was ‘too soon’ or not. That’s life, that’s chance. You don’t need to feel guilty for having herpes. Depending on the number of partners, it is something that may happen when people are quite young.  All it takes is one experience of skin-to-skin contact (with the affected part with friction) to contract the infection, and having it does not reflect negatively upon personal cleanliness or morality.

It is unfortunate to catch herpes from your first partner, but not that uncommon. And you are unlikely to stay with your first partner… Many people have been unlucky in love. It is a charming fault to fall for people too easily. Of course, the subsequent break-up is painful – you can get your heart broken. But this is much better than being a hard-hearted. You never know if you will be able to swim if you never jump in the pool.

Having herpes is nobody’s fault. Don’t feel guilty about having herpes. If you have it genitally it means you’ve had some sort of sex. But that is expected of people over the age of consent.

Herpes does not cause depression

Depression is difficult. It’s nobody’s fault. It does not respect status or situation. And herpes simplex virus does not cause depression. It is what you think about the virus that can affect your mood. If you are really depressed don’t be afraid to seek help. It can be treated. With support and the right treatment you can feel normal again. My best friend is – at last – taking sertraline and she says “It’s great to wake up every morning, and not feel like doom is about to happen.” Our worst fears are seldom realised, but knowing that may not help when the ‘black dog’ affects you.

Lastly, don’t be judgmental. Never be hard on yourself for things that you’d forgive your friends for. Ask yourself for all the issues that you are beating yourself up over: “Would I blame a friend?!”

It is just bad luck if we catch it. No one deserves bad luck. Bad luck is not a punishment for anything. It happens. Children get leukaemia. Wonderful people are killed in car smashes. Super people catch a virus and there are far more devastating viruses than herpes. The HVA can help with your herpes concerns. Then you will be able to move on.  

Take this fact to heart and move on…