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Herpes information

The HVA herpes information leaflet is called “True or False”. I took 200 to the Annual Conference of the Royal College of GPs in Liverpool 24-25th October. The delegates took 177 of them!

Herpes information leaflet on the stand

Liz Allen of the British Association of Skin Camouflage (left) Marian (right)

Doctors were glad to find materials to help their patients with all sorts of skin conditions. And the herpes information leaflet was appreciated. It offers treatment advice and also emotional support… Several doctors said things along the lines of “I didn’t know there was this kind of support for my patients and they can be very upset about it.” And a couple of doctors even thanked us for having the stand!!!

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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’ :

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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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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 Metro which you might expect, 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 and two kinds of glandular fever 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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It’s not JUST the cold sores that increase the chance of Alzheimer’s!

Dr Ruth Itzhaki

Dr Ruth Itzhaki has been working on a possible link between cold sores and the development of Alzheimer’s for a long time.

Now she is suggesting it is time to investigate the use of antivirals in mid-life, with the view of preventing Alzheimer’s later on.

She says “We discovered in 1991 that in many elderly people HSV1 is also present in the brain. And in 1997 we showed that it confers a strong risk of Alzheimer’s disease when present in the brain of people who have a specific gene known as Apoe-e4.”

She adds ”The likelihood of developing Alzheimer’s disease is 12 times greater for Apoe-e4 carriers who have HSV1 in the brain than for those with neither factor.”

This is why we don’t see Alzheimer’s developing in the all of the 67% of the population who carry herpes simplex type 1 virus .

For cold sores to be a problem, the person has to also have the unusual gene. Wikipedia tells us that only 14% of the population has the Apoe-e4 variant.

Dr Itzhaki suggests that “It’s time to investigate the use of antivirals [aciclovir or other] in mid-life with the view of preventing Alzheimer’s later on.”

More research will be needed to see how effective aciclovir is in preventing the development of Alzheimer’s in people with type 1. It is such an easy treatment, if it works this will be most welcome!

And this research is totally irrelevant to people with genital infection.

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Stop scaring mums-to-be

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.

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 Stop scaring mums-to-be

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New cases of genital herpes

Each year, Public Health England publishes the number of new cases of genital herpes – and all STIs – diagnosed in clinics. (More will be diagnosed by GPs but these are not counted.)

This year, for the fifth year in a row, the total number of new cases of genital herpes has gone down: 32,737. And by the way, the total number of people accessing this STI clinics’ service continues to rise year on year.

In two groups, only, has the rate gone up a tiny bit: females in the 25-34 year age group, it is up slightly at 6,781 and for men and women over 66, a few more have been diagnosed each year – but only 200 men and 159 women!

The full list of all STIs (including genital herpes) is online.

But new cases of bacterial infections are up

For other conditions, the situation is more troubling: both syphilis and gonorrhoea are up. Both can be very serious if untreated, and gonorrhoea is getting almost impossible to treat as it becomes resistant to all antibiotics. (And there are no new antibiotics ‘in the pipeline’.) So use a condom with all new sexual partners until you have both been given the all-clear at a sexual health screening.

Remember that to get a diagnosis of herpes, you have to been seen immediately, while the spot is there.

The government has passed responsibility for sexual health services over to local government to commission (for the cheapest possible price). It has been noticed that almost everywhere services are getting less accessible. Services have moved out of hospitals into the community. But sometimes this means that people don’t know where to go. We hear people on the helpline telling us how hard it is to be seen, no appointment system, you have to wait ages.  At least in some places (e.g. Burrell Street, London) they give you numbered tickets and tell yo to come back in an hour or so.

If you are not satisfied – be heard!

If you want to comment, there is a template letter on this page. (Takes you to a different website) Or, more easily, you can sign the petition to maintain the sexual health services.



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Helpline chats

The helpline gets a lot of calls every (week) day and here are some of the most common questions:

“Will I transmit my genital herpes to my child?”

The answer to that is of course, “no you cannot – it is transmitted directly skin-to-skin with the affected area so clearly a mum with a cold sore does need to take care, but a mum with a genital sore is not going to infect her child with her genital herpes.

“I had sex last night and now I have an outbreak, will I have infected my partner with genital herpes?”

The answer is there are two possibilities. One: if your body was planning on having an outbreak today, then possibly you were infectious last night and the partner might have caught it. Two: (and this is much more likely) the late night or the friction has triggered the outbreak, and you would not have had it if you had not had sex. So you were not infectious last night. By the way, if sex triggers outbreaks, use a sexual lubricant with silicone.

“Who did I get herpes from?”

It is important to remember that a person can have their first outbreak of genital herpes many years after catching it.  So, often you cannot know for sure where it came from.

“Is this (…long description…) herpes?”

We cannot diagnose on the phone. Each of the symptoms of a primary outbreak of herpes can be linked to many other illnesses. So, the ‘flu-like symptoms’ might actually be flu. The ‘itchiness that comes before the blisters appear’ might be caused by anything from allergy to washing powder, to eczema.  The ache in the leg might be a strained muscle… Get diagnosed at a clinic.

Marian Nicholson, 15 March 2018


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Protect sexual health clinics

We need to protect sexual health services

Sign the petition  to maintain the sexual health services. Since the government REMOVED sexual health from the NHS and asked local councils to provide it, the standard of services (access times, staffing, etc) has gone down.

You need to show that members of the public do want the provision of anonymous, easily accessible sexual health clinics. Sign now!