This site was last reviewed on 1 July 2009

We are often told that: "I was really nervous about coming to meet you. But it was the best thing I've ever done. I really enjoyed meeting other people with herpes and talk about it openly - and to get my questions answered."

People thinking about coming along always ask "What sort of people come to these?" And the answer is "Normal people!" We all are: all ages, all colours, all sexes! Some have been before; others are new; members have had invitations through the post; non-members have seen these details 'on the net'. Conversation is about everything: how someone had caught it, how someone else's partner had reacted. Mainly, it involves feelings of lack of self-esteem and the problems/methods of talking about herpes simplex ('cold sores on the wots-it') to new or potential partners.

At a previous event, one of the people attending was helpline volunteer. She went off to a corner sofa to give some individual advice and support to a couple of young women. One of them decided to subscribe and gave me her cheque right away, two more said they planned to. Everyone said that they had benefitted and enjoyed their afternoon. Will you be there next time?

Do you have herpes simplex? Come along to a support group/social get-together run by the Herpes Viruses Association, meet others with the virus, and get answers to your questions.

Summer/Autumn 2009
London

There are usually several meetings in London each month. As well as our usual meetings at the President Hotel, we are dining in August in Chinatown - and will have a Picnic in Holland Park.

Central: We have meetings on Saturdays afternoons and on weekday evenings. The next Saturday is 18th July at 3 pm - this is convenient for people who are coming into London from a bit further away. We can discuss 'it' in public without anyone being aware we are talking about genital herpes. Saying 's' 'e' 'x' won't set people earwigging. The venue is the Atrium of the President Hotel, Guilford Street, off Russell Square. Turn left out of Russell Square tube, first left down Herbrand Rd, the hotel is 60 yds ahead. Inside, turn right, the atrium is through the double-doors.

This venue is especially good if you don't like pubs as you can get coffee/tea as well as beer/wine, etc. Some of us go on to eat somewhere nearby at about 6.00pm. Marian or other volunteer will put a Toblerone-shaped sign with 'SPHERE' on the table. Then there will be a meeting on 22nd August, 26th September, etc.

On Thursday, 9th July, 6.30 pm. (and probably Thursday 16th as well - phone Marian). All welcome to come and meet Marian and chat or ask questions about 'it'. Marian will wait till 8.00 pm and if no one has arrived, she'll leave. BUT if you have arrived before 8.00, we can go on chatting till all hours... This is an open meeting at the President Hotel - see above. This is such a pleasant venue that one member who often comes along, commented that it was more comfortable than her own sitting room! Another meeting 'open to all' will be here again Tuesday 4th August, Thursday 3rd Septermber, and more later...

Party evening on Saturday, 1st August - see details sent with SPHERE 24/1.

Around the country

These social (and sometimes 'support') events occur in people's homes and in pubs, cafes, etc. around the country. Groups meet in Manchester, Newcastle (Tyne & Wear) - and of course London.

New places! Members are holding a meeting in Plymouth and in Birmingham on 25th. And in Birmingham you can book a one-to-one with Marian in the afternoon of 25th. Full details sent with SPHERE.

Study Day, in the summer - 1st August

We run workshops to help you develop confidence in 'Talking to a new partner'. 16 people attended the last one. They all told us it was a wonderful day and several commented that it was even better than they had expected. These workshops are for our members only - see subscription form to join. Feedback from people who attend these is always very positive. Come along to learn the facts, overcome the stigma, share experiences, practice your lines... Join now (click on 'Membership' button on left to see how to subscribe by post, by email - or phone 020 7607 9661 with your credit card or debit card). Date: every three months or so - next one will be on 9th May.

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What you'll see in the current newsletter

SPHERE 23/4 - check back SOON for the update on 24/1 - reports the talk given to us by a GUM consultant in February: read about the latest treatment regimes - how to use your aciclovir to best effect, in particular if you are a woman who gets periods in sync with your period - our research finds that 78% of women do. The speaker gave us so much information that half of his talk which deals with transmission and stigma is held over to the next SPHERE - the summer issue. We include reports on research being conducted on ways of controlling the the virus: nanoparticles, RNA enzymes, microbicides.

The psychology of herpes simplex is attacked from two angles in two articles...

We always have a 'My Story' - this one is from a person with experience of 'telling a new partner' who gives you a list of her dos and don'ts when it comes to talking about it.

We have new entries onto our 'Dates and Mates' list (some penpal/friend requests - but mostly they are 'lonely hearts' adverts). There are about 96 adverts on the master list.

You can read some articles from past SPHEREs here.

We will also sell you back copies of SPHERE - for instance over two newsletters we recently printed a talk on the psychology of having herpes simplex - a total of ten pages. Dr John Green spoke for almost an hour at our Annual Meeting in 2006 - and made us laugh - on the topic of "Getting your head around it". It's almost a verbatim report of his talk including the question and answer session and his views on the (non-issue) of the Crown Prosecution Service's guidelines on 'deliberate infection with an STI'. His attitude was that if he was called as an expert witness, he would use the court to ridicule the idea of attempting to bring a case about this. But he does not expect, ever, to see a person in the dock for transmitting herpes simplex; he laughed and said something about how you cannot call herpes simplex 'a serious condition'. His whole talk was very amusing and the report is sprinkled with [LAUGHTER] notes so that readers can feel what it was like to be in the room. (They are in SPHEREs 21/3 and 21/4.)

Why not subscribe on the subscription form?

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A mother caught a cold sore at the time of giving birth, infected her baby which died.

Mrs Scott gave birth to Jennifer in November last year. Now she has mounted a campaign to get doctors and nurses to consider herpes simplex if a new baby falls ill during the first days of life. Marian Nicholson of the HVA comments “Whilst her death is tragic, we need to put it in context. Nearly three quarters of a million babies are born each year, only 13 develop herpes simplex in the first days of life and four die each year. The reason the risk is so tiny is that all mothers who have herpes simplex antibodies give their babies 'maternal antibody' in the last months of pregnancy. So the baby is born with antibodies and is protected from catching the virus for a few months - when the 'maternal antibody' fades away. Because her mother did not catch the cold sore until the end of pregnancy, Jennifer did not have any protective antibodies and so was able, fatally, to catch the cold sore off her mother or someone else."

"Although cold sores are only a very small risk to new borns, I would still suggest that mothers keep anyone with any sort of infection such as cold, flu or cold sores away from their new babies."

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Our campaigns

We send 'letters to the editor', submit articles for publication and write to journalists. METRO recently had a cover story about young people and STIs which included the 'fact' that babies born to mothers with herpes simplex die! As if! The truth is that babies whose mothers have herpes simplex themselves have the antibodies that will protect them from mothers' virus, should they meet any while being born. It is only the babies of mothers having a primary illness (first infection) or mothers who have no herpes simplex who are at risk of serious illness. So if know you are infected, you do not have to worry. See the letter we sent to the METRO editor here.

Last year the Times and the Independent recently printed our letters saying that the stigma must stop, and you can read them both here. A longer article explaining what is being done and what needs to be done to improve GUM services was published in 2004.

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A sky-dive!

Send a donation labelled 'for the skydive' and when we have £1,000 Marian will jump out of a plane. But ALL the money will go to the HVA, she'll pay for the jump herself... So far, we have £235. More needed!
This is part of our new, vigorous fund-raising - needed because the Department of Health is only funding 'new projects' and we want to carry on running our usual service.

A source of antiviral pills

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DrThom is a site where you can buy aciclovir pills if you have been diagnosed with herpes simplex. It is UK-based and has the approval of the Health Commission. Having them to hand so that you can take them the moment that you notice the first signs of an outbreak makes sense. If you want to use them to prevent an outbreak when you are planning a sexy weekend, this is a useful source. But if you are someone who wants to take them for a while to supress too many outrbeaks, at £21.99 for 25 tablets (5 days' treatment of an outbreak) this is an expensive option, you may prefer to see if your GP will give you a prescription.

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Write to your MP

We ask our readers write to their MPs as this will help pressurise local health authorities to make available the £300 million extra funding that was promised to sexual health clinics - as in many cases this has been diverted to other health priorities. You can download a sample letter and then copy and paste to creat a letter with your own details.

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New cream works - our trial of liquorice cream shows benefit

A cream to treat cold sores with liquorice as its active ingredient has featured in the press recently. We are doing a placebo-controlled study of this cream (this means the HVA office didn't know who got the real thing and who got the dummy cream). The result was positive for the liquorice cream. Full report can be read here.
The important paragraph says: "Whilst the liquorice balm scored more highly than the placebo in for both categories, the 17 people with facial cold sores were more satisfied with liquorice balm (average score of 73%) against placebo (average of 38%), than the 17 people with genital sores (average scores of 60% for liquorice balm with 45% for placebo)."
Scroll to the bottom of the report for cream purchasing details.

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Volunteering

Meetings are magic! We need more of them - can you find locations for us? Over and over people say how much better they feel after coming and meeting us. "I wish I'd done it sooner." "This first meeting was miles better than I ever imagined." We used to have meetings in Bristol, Exeter, Leeds, Glasgow - but the hosts have moved on. Why not have meetings where you live? Get involved: (1) find a venue, (2) send in the full details and we will let everyone know about it. We will ensure that someone well informed attends your first meeting. We can give you all sorts of advice: phone in.

We need a volunteer (or more than one) to come into the office to do the routine tasks of administration. The two of us cannot manage on our own but we cannot afford to employ a third person. You could come in on certain days of the week, or for part of a day, or in even the evening (we're here till at least 8 pm). We will show you exactly how to do the tasks, but obviously it would help if you have some word processing or Excel experience. We are conveniently just round the corner from Caledonian Road tube station (Piccadilly line) and your fares can be paid. Talk to us about what you might be able to do: 020 7607 9661.

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Do you get lots of cold sores? Willing to be on TV?

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