This site was last reviewed on 30 January 2012

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! Nice people!" We 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. It is a sort of informal counselling if you like, with the experience of each person there adding to Marian's time-tested advice.

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.

Winter 2012
London

Meetings on Saturdays afternoons
FREE SAMPLE The next Saturday is 25th February. We will be there from 3 pm - to 6 pm, but you can arrive and leave when it suits you, we are very informal. We can discuss 'it' in public without anyone being aware we are talking about genital herpes. Talking about 'h' and spelling out 's' 'e' 'x' won't set people earwigging. The venue is usually the Atrium of the President Hotel, Guilford Street, off Russell Square, SEE 'NOTE THAT' BELOW. 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.
NOTE THAT, I have been told the Atrium will be closed for refurbishment sometime, if this were to happen, we meet in the hotel's 24-hour Night and Day bar. Easiest way to reach the Night and Day bar is: turn left out of the tube station, at the traffic light, turn left down the side of Russell Square. Over the next traffic light, the Night and Day bar has two large trees in pots marking its entrance. We will be in the left-hand side of the room if we possibly can be... Look out for the yellow SPHERE sign on the table.

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 after 6.00pm. Marian or other volunteer will put a Toblerone-shaped sign with 'SPHERE' on the table.

Also Saturday afternoon on 24th March, 21st April and again in May etc - check back for date

Weekdays at 6.30 pm:
On Tuesdays, 14th February, at 6.30pm - for other days of the week see end of paragraph. All welcome to come and meet Marian or Nigel and chat or ask questions about 'it'. We stay there until 8.00 pm and if no one has arrived, we'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's Atrium Lounge or Night and Day 24-hour Bar - see full details above. Then again onTuesday 13th March and Wednesday 11th April. Check back for May, etc.

There are events organised by H-ype. This is not a Herpes Viruses Association organisation, but many of our members enjoy the H-ype events in London and around the country. We will be joining the H-ype group after our Saturday afternoon event on 21st April. Join us from 3 pm on up till 5.50 pm when we will go along to their evening's social event: a bite to eat at All-Bar-One and then drinking and socialsing with an enormous crowd (over 100, I'm told) till all hours. See the www.H-ype.com website for more details.

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 (16th January), Newcastle (Tyne & Wear) - and of course London.

New places! There are hosts interested in hearing from members in Coventry, Reading, South Coast (Poole and around about) - if you are a member send your details to us at at info@hva.org.uk and we will send them on to the hosts. There are embryo groups in Maidstone (Kent), Chester (Cheshire), Bristol (Somerset), Peterborough/Cambridge and possibly Perth. Full details sent with SPHERE.

Study Day 'Towards Intimacy': Saturday, 11th February 2011 - another will be advertised when date is fixed.

We run these days to help you develop confidence in 'Talking to a new partner'. 8 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). More dates: every three months or so - let the office know that you are interested and you will be added to the list.

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What you'll see in the current magazine

SPHERE 26/3:
- gives an update on the 'case' in Northampton (see blog)

- tells you why you may be getting outbreaks when most others don't

- Professor George Kinghorn's talk from the last Annual Meeting concludes with his views on how the antibody test can best be sued, a 2-page article;

- 2 pages explaining why stigma sticks called 'Confirmation Bias - what it is an why you need to get rid of it;

- pain created by and associated with herpes simplex, what to do about it - explaining the dermatomes - 3 pages.

'My Story' relates the experience of a typical 'herpes sufferer' and what happened to her.

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 sent to all new members.

You can read some articles from past SPHEREs here.

You can also order 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, given by Dr John Green on "Getting your head around it" - he made us laugh! 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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If this website helps you, please help us with a donation. (We rely totally on donations/subscriptions.)

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Live-and-Love: see all the 'how to tell a partner' video clips

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A video 'life story'

She has been on many TV and radio shows, talking about her personal experience. Most recently, this was on Sky Real Lives in the first programme in the 'Secret Guide to Women's Health' - interviewed by Colleen Nolan.

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Our own Wikipedia page

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

Mrs Scott has since 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 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.

We had letters in the Times and the Independent in 2007 saying that the stigma must stop, and you can read them both here.

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VACCINE TRIAL

On 3rd November the doctor running the Amgen (formerly BioVex) vaccine trial confirmed to us that they are still proceeding with phase 1. The report on the phase 1 trial will be presented at a medical conference in May 2012.
Phase 1 is the safety stage - and, so far, the Immunovex vaccine has proved safe. So it will be a commercial decision as to whether the trial is continued.

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A source of antiviral pills

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 outbreaks, at £22.99 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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Volunteering

Fundraising internship
Want something good on your CV? Come and do some serious fundraising for us. Either for the HVA or else our sub-group the Shingles Support Society (SSS). We envisage two different campaigns depending on whether we are fundraising for sexual health (HVA) or for a painful condition in the elderly (SSS). Flexitime to suit your availability. Send us an email at info@hva.org.uk.

Drupal expert?
Our new website - not this one but a prettier one - needs a Drupal-person to help us to learn how to deal with it... Can you spare a few hours from time to time?

Host a meeting
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.

Office work
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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If this website helps you, please help us with a donation. (We rely totally on donations/subscriptions.)