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Help to get my head around herpes:

Get your head around herpes! Have you just been diagnosed with genital herpes or have you had it for ages? How do you feel? Do you think it changes anything, or everything? I’m here to tell you that you might have the wrong idea.  

When I was diagnosed, I thought my dating life was over.  

I felt shame and guilt. I thought I was a bad person, so bad things had happened to me. I thought nobody would want me.  I wasted two years in my thirties… I could not have been more wrong.   

You might feel the same way now. If you do, read on and perhaps I will be able to persuade you to look at herpes differently.

Continue reading Help to get my head around herpes:
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‘Herpes’ not implicated in causing multiple sclerosis

Epstein Barr from the family of herpes virus
Epstein Barr viruses

This week BBC Radio 4’s ‘Science Now’ mentioned ‘herpes’ in the coverage of research into the causes of MS and similar diseases. Within fifteen minutes we had three phone calls telling us about this, just because the word ‘herpes’ was mentioned.

Listeners who paid careful attention to what was said will have realised that the virus being discussed was Epstein Barr virus (EBV), one of the herpes family of viruses, but not herpes simplex of either type – so emphatically not the viruses that cause genital herpes. Your ‘herpes not implicated’ since you don’t have EBV.

Epstein-Barr virus (humanherpes virus 4) is the possible trigger for multiple sclerosis. The German scientist who was interviewed for ‘Science Now’ loosely referred to the ‘surname’ of the whole family of herpes viruses as he explained that it was Epstein-Barr that was in the frame.

His new study builds on previous research and provides further evidence that multiple sclerosis may be caused by a viral infection. The suspected virus, the Epstein-Barr virus, is most commonly known as the cause of mononucleosis or kissing disease. Most people become infected with it at some point in their lives, often with no symptoms.

Click for the page that explains all the herpes viruses and learn more, now that you know your ‘herpes not implicated’ : https://herpes.org.uk/nine-human-herpes-viruses/

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Coachella festival “herpes epidemic” invented by a smartphone app and publicised by gullible media

Coachella, the Californian music festival hit the news last week – for all the wrong reasons. Stories of a Coachella herpes epidemic were published by every second rate gossip blog and then repeated by news outlets that should have known better, like Newsweek, Metro and the Daily Mail.

Photo of Coachella music festival.

There was no epidemic. The facts don’t stack up, as any journalist with half a brain should have realised, but the lure of another herpes headline, with accompanying clicks, was too much to resist.

The implication of the fake news coverage is that people are spreading herpes through having casual sex at the festival. Well festival goers might be having sex , but stories of a herpes epidemic are not supported by the facts.

HerpAlert is a smartphone app. The spike in the numbers of people who contacted HerpAlert began as soon as Coachella started. This is well inside the incubation period for herpes which is upwards of two days and often four/five days or up to two weeks. This means that the people who contacted HerpAlert already had herpes before they arrived at the festival. They were existing carriers who wished to use HerpAlert services.

Jose Arbello of the Riverside Department of Public Health said that his did not see any evidence of a rise in herpes cases, despite recent reports that HerpAlert saw a near tenfold uptick in cases in Southern California during the festival.

“My first reaction is that the whole thing is kind of silly because symptoms don’t typically show up in 24 hours,” said Dr Jill Grimes, a family doctor and author of Seductive Delusions: How Everyday People Catch STDs. “It can take anywhere from two to 12 days for symptoms to appear, although the average is three to four days,” says Grimes, who is on faculty at the University of Massachusetts Medical School and is spokesperson for the American Academy of Family Physicians. 

An official with the Los Angeles County Department of Public Health said,
“Herpes is not a reportable disease, as it is very common and has extremely rare complications; so trends in herpes cases are not easily tracked.”

It’s possible that HerpAlert’s spike in people using the app could be a result of increased advertising or marketing, a possibility that was raised by officials.

So there you have it. Don’t believe everything you read in the papers or online, especially in Newsweek, Metro or the Daily Mail.

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When will there be a cure for herpes?

A member just asked us this question. We get asked “will there be a herpes cure” every day. It proves how successful the aciclovir (Zovirax) marketing campaign was in the 1980s. The masterstroke was to call herpes ‘incurable’ to make it seem important. (There is in truth, almost nothing about genital herpes that is important, so the drug company did some creative thinking.) This was a brilliant idea because it ensured the success of aciclovir. They put herpes on the map and it has never looked back!

a possible herpes cure as a pill?

What Humpty Dumpty said

Incurable is an ‘Alice in Wonderland’ word. It can mean whatever you want it to mean. If you are diagnosed with terminal cancer, you have something that is genuinely incurable and you are going to die. If you have a bad cold, you have an infection that medical professionals call ‘incurable’ because there is nothing that they can prescribe for you that is going to make the cold go away more quickly.  (You can take paracetamol and that can help with the symptoms, but the cold will last just as long.) Cold sores and genital herpes are not incurable because symptoms go away by themselves without treatment. If herpes was incurable, the sores would never go away.

In fact, for most people, the virus is so well controlled that they don’t even notice enough to realise that they have caught anything at all, so they are not even diagnosed. What the drug company’s marketing campaign was capitalising on was the ability of the herpes simplex virus to hide in the body and sometimes cause more symptoms later. They could have called it ‘clever’, but that doesn’t sound scary.

Continue reading When will there be a cure for herpes?
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Media lies as usual … about herpes!

You may have seen articles in newspapers/online about ‘herpes in astronauts’. As usual they misrepresent. So if you haven’t, don’t bother to search – they are uniformly misleading. Not just in tabloids, but even the Independent got it wrong. As we have written before, journalists only know about one type of herpes and assume the scientists are writing about genital herpes, whether they are or not!

Key Points:

As you might expect, any condition that reactivates when a body is under stress is likely to show up in astronauts. Now, after 60 years of men-in-space, scientists decided to measure the amounts of 4 different herpes viruses in saliva and urine. In about half the astronauts, they found shingles (herpes zoster – a recurrence of chickenpox – type 3) and two kinds of glandular fever (humanherpes viruses types 4 and 5) present during space flight. In conclusion, it is useful for the astronauts to know that they should not kiss vulnerable people when they land, as the glandular fever-like viruses will continue to be present in saliva for up to a month after a long flight.

What the Frontiers in Microbiology, Feb 2019, reported:

“Currently, 47 out of the 89 (53%) astronauts from shuttle-flights and 14 out of 23 (61%) astronauts from ISS [longer] missions shed one or more herpes viruses in saliva/urine samples.”

There are 8 herpes viruses that humans may have, including chickenpox/ shingles (VZV) and several glandular fever-like illnesses EBV and CMV.

Continue reading Media lies as usual … about herpes!
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We talk on Woman’s Hour – BBC Radio 4

Jenny Murray and Jane Garvey host Woman's Hour
Marian Nicholson (HVA director) and two members, Jess and Sylvia, were interviewed for 20 minutes by Jane Garvey. This was for Friday 22nd February’s Woman’s hour. Then the editing reduced this to 12 minutes. This shows that they liked it, because originally we were told we’d only have 7 minutes!
Hear it on BBC Sounds – at the 6 minutes point. We did our best to destigmatise the issue. Sylvia and Jess were brilliant (thanks ladies) and talked about how their partners were OK with it. Marian talked about how very, very common it is. Listeners have told us the editor did a good job!
If you would talk about your experience to help get rid of the stigma, let us know. It could be in print media, on radio or even TV! Email [email protected]
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Laura’s letter to her younger self

Dear Laura,

I know exactly how you’re feeling. You’re 26, and you’ve just found out from the doctor that you have herpes. You’ve just burst out crying in front of the awkward-looking trainee GP. You feel like your whole world is over, you’re damaged goods and no-one will ever want to have sex with you again.  

You’re going to spend the next week in the flat, crying, downing wine and despairing at the terrible injustice – you only had sex with him one time! And you didn’t even really like him!

Well I’m pleased to say that ten years’ later, you’re doing great! Yes, at the beginning it was difficult, and maybe you did avoid some romantic encounters because you felt insecure about having to tell someone you had herpes. But then, about a year later, you met Steve – such a great guy. You waited until you’d been out a few times, and you were about to get near to having sex, and then sort of blurted it out. And he was absolutely fine about it! You ended up dating for almost a year, and then after that you went on to have three more really happy relationships. No tears, no rejection – everyone you told basically shrugged their shoulders and never mentioned it again. 

Married now

Then you met the person that you would end up marrying. You were really nervous, because you knew she was someone special. Spent the whole meal trying to eat your dinner and follow the conversation, with heart pumping at deafening volume. Well that was an anti-climax – again -just a shoulder shrug and ‘oh, I don’t know much about it but I’m not bothered at all’. Cut to 5 years later, and we’re still going strong.

So what I’d love to be able to do for you (and everyone who might be going through something similar) is give you a giant hug and tell you that IT WILL BE OK! You are the person who will be the most worried about things – not your future partners. They will choose you because they fancy you and love you – as you would for others, because why on earth would you not go out with someone because of a skin condition? How ridiculous! And if you do come across someone who judges you on the basis of that skin condition, do you want to waste your time with someone like that? There are so many good ones out there.

Honestly the hardest thing you’ll have to get over are your own feelings of shame and embarrassment – and you’re still working on it (that’s why I’m using a pseudonym here). But there are people like Marian and Nigel trying to break down that stigma, and in time maybe you’ll work up the courage to be 100% open.

But in the meantime dry your tears, and try not to worry too much about the future, because it’s a really really happy one.

Lots of love, you +10 

Xx

P.S. You can learn to talk about this with HVA help. See support meetings and join a chat.

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Neonatal herpes is rare

We say “Stop scaremongering baby deaths” 

Death from neonatal herpes is rare and screening mothers is unlikely to help.

The tragic deaths of several babies from neonatal herpes infections have been widely reported this year.[1] Despite scary headlines, it is rare for babies to be affected: nature has ensured that new-born babies are protected. Most medical professionals never see a case of a baby with herpes in their entire career.

See our video about pregnancy.

Herpes is a highly unusual cause of neonatal death

Neonatal herpes infections are serious but rare. Total UK infant mortality from all causes is about one third of 1% in the first year. Death from herpes simplex infections affects 0.0016 of babies,[2] – a tiny proportion of these deaths.

Continue reading Neonatal herpes is rare

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Thrush or herpes?

How should I treat thrush (candida), when I have genital herpes?

Thrush is also known as candidiasis or a yeast infection.

It is widely thought that that using a thrush cream to treat a yeast infection can make a genital herpes outbreak worse. So if you have both at once, it is best to use a pill (oral medication) to get rid of thrush: you can buy fluconazole pills (brand name Difflucan or Canesten) at the chemist or it can be prescribed by your doctor. One dose should be enough.Woman taking a thrush pill

First of all, it may be an idea to make sure that thrush is actually what you have. American studies show that two-thirds of women who buy over-the-counter thrush treatments don’t have a yeast infection at all.

Problems may also be caused by ‘jock itch’ – another itchy rash, often in the groin  Continue reading Thrush or herpes?

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We did oral and regular sex – could I have herpes on my face too?

It is surprising that people rarely catch it on the face as well as on the genitals! When you consider how often we do oral sex and ‘normal sex’ on the same night.

Cartoon woman points at her mouth
Is it a cold sore?

This is a common story/question that we get on the helpline/by email:
“I was diagnosed two months ago with genital herpes. I got it off my partner’s cold sore – yes, it is type 1 – and now I have something on my lip/in my mouth. [Described as a cut on lip, a lump in mouth, or an ulcer on tongue/gum]. Could this be facial herpes too – have I got a cold sore as well?”

The answer is “No, that is not going to be a cold sore.“

Why? When you get your first symptoms,  Continue reading We did oral and regular sex – could I have herpes on my face too?