Diary dates – Extra! As well as regular venues, scroll down to see Gay meet-up in London / new Maidstone meeting 23rd July – updated 21 September 2016
Daily Mail stories explained Cancer? No! Muddled Story untangled – July 2016. ALSO get the facts of this tragic story – 5 December 2014
Take part in research – updated 17 May
Blog – new posts May 2016
What you’ll get in the current magazine – updated 11-5-16
Buying antiviral tablets – updated October 2015
SUN’s story about a baby and a cold sore – 23 September 2015
Volunteering – updated 8 May 2014
Like us, or just look at our Facebook page – updated 3 July 2013
Vaccine against shingles – 3 February 2015
Stigma and services – our campaigns! – update 28 February 2013
Confidentiality at clinics… – 25 January 2013
Donations for Research – 4 April 2012
Vaccine Trial – updated 30 January 2014
Survey ‘Name your ‘Herpes Hero’ / Say what you think of sexual health services’ – added 3 Dec. 2010
Our own Wikipedia page – added 11 February 2011
See Marian’s story on video on NHS choices website – updated 20 April 2012, created 17-5-10
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.
London – meetings on Saturday afternoons and weekday evenings
Venue: the Atrium Lounge in the President Hotel, Guilford Street – about 2 minutes from Russell Square tube. Turn left out of the tube station, first left into Herbrand Street. The hotel is straight ahead. Inside the hotel, turn right and go through the big glass doors. Look for the yellow SPHERE sign on a table. (Parking free after 1.30 pm near the hotel.)
Saturdays: 1st October and one every month…
Marian usually hosts this. But this time it will be Nigel, our wonderful Information Officer. He 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’ people won’t pay attention.
The Atrium venue is especially good if you like a quiet, comfortable atmosphere. It is usually nice and empty – we find we can chat without fear of being overhead. We drink tea/ coffee/ wine/ beer/ cocktails – all really cheap for London!
Some of us go on to eat somewhere nearby after 6.00 pm. Marian or other volunteer will put a Toblerone-shaped sign with ‘SPHERE’ on the table.
Weekday evenings at 6.30 pm:
Wednesday 14th Sept. and Tues 18th October – and more throughout 2016. All of you are welcome to come and meet Marian. We stay there until 7.30 pm and if no one has arrived, we’ll leave.
BUT if you have arrived before 7.30, we can go on chatting till all hours… This is an open meeting at the President’s Atrium Bar/Lounge – see venue details above.
The six people who came to one of these liked talking to each other so much, they agreed to come again in March – and five of them did!
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.
“At my first meeting I was told ‘Of course you can have a normal sex life’ by a man who’d had herpes simplex for five years. I didn’t believe him. Now I know he was telling the truth.” says Marian
For members, there are more events: see leaflet sent with your last magazine.
Gay Guys in London
A member is having meetings for gay guys – there is one this Friday, 3rd June. There will be more! http://www.meetup.com/London-Gay-Mens-Herpes-Meetup-Dating/
Around the country
These social (and sometimes ‘support’) events occur in people’s homes and in pubs, cafes, etc. around the country. You can join meetings in:
Regularly, a group meet in Bury. Also, there are people interested in having meetings in Leeds, Bristol, Eastbourne, Coventry and Reading.
NEW MEETINGS – Glasgow and Maidstone
GLASGOW: 23rd Saturday, George Square – from 6 pm – email the hostess to find out where.
The last meeting was great, with 8 people.
Sue will put her ‘Teddy with a Red Love Heart’ on the table…
Elsewhere: If you are a member, send your details to us at at email@example.com and we will send them on to the person concerned. There are embryo groups in Chester (Cheshire), Peterborough/Cambridge and possibly Perth. Full details sent with SPHERE.
The Sun (23-9-15) wrote about a mum who is asking people not to kiss new babies
Because Claire Henderson had never had a cold sore (or any other herpes simplex virus) her baby did not have any antibody protection when someone with a cold sore kissed baby Brooke. The newborn baby became very ill. Luckily, the hospital put the baby on an aciclovir drip and this ensured that she made a full recovery.
If you have genital herpes, cold sores, or whitlows (on the finger), your new babies have ‘borrowed’ antibody protection that will last them until they are old enough to catch things without danger. So you do not have to worry about infecting your baby.
Since no one knows the antibody status of a new baby, don’t kiss a baby that is not yours!
‘Talking to a New Partner’ – come to a day that will give you confidence (and information) – next one is 14th May.
We run these days to help you develop confidence, information, skills – and to meet others in the
same boat. 9 people attended recently. They marked their score cards with the top rating: a ‘very helpful’ day and several commented that it was even more enjoyable than they had expected. “Meeting the others on the course is a bonus,” said one lady. “In fact I have made two new friends and we support each other and meet up.”
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 (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.
Of course, we talk about all these issues at every meeting in London – see dates above. So come and get your questions answered and meet others.
Spring edition of Sphere
Explanation of the ‘cold sores and Alzheimer’s’ as told by the researcher herself Dr Ruth Itzhaki.
The verbatim report of (part of) the talk by Dr David Pao at our AGM – with link to the blame/shame video clip.
You will agree that ‘the state of your mind affects the state of your body’ – read more in this issue.
Plenty of updates on research into the virus – all of which will lead towards the answer of how to stop this infection.
Currently there are many vaccines being worked on – but none of them has reached the phase 3 stage, when we can start to hope that it might reach patients (or their partners).
You can read comments from people who attended one of our “Moving On Days” – half the members who attended the one in May are now in a relationship.
And there is always a personal story – in every magazine.
Go to www.IWantGreatCare.co.uk and give a review of the hospital, the doctor, the clinic who needs a compliment or a piece of ‘constructive criticism’. This website has already resulted in better treatment on a children’s ward. It’s a brilliant way for us to comment on sexual health services as you can remain anonymous. When you are done, chose HVA as ‘your charity’ and we get 5p. Hey, every little helps!
You can read some articles from past SPHEREs here.
You can also order back copies of SPHERE – for instance you can read a talk on the psychology of having herpes simplex given by Dr John Green on “Getting your head around it” – he made us laugh! A total of ten pages printed in two successive journals. 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.)
Sign up to get the magazine sent to you every three months by post or by email.
If this website helps you, please help us with a donation. (We rely totally on donations/subscriptions.)
There has been a law since 1917 that ensures that information about you – when you visit a sexual health clinic – is kept confidential.
The government is proposing to scrap this law and replace it with woolly rules on confidentiality… Read more about this on our blog. Or go straight to the (short) survey organised by
BASHH (sexual health doctors’ organisation). Send it to anyone else you think will help.
Take part in research
1 Herbal cream from Australia. Volunteers needed to test it. Free supplies sent to you. At present we are testing it on FACES and MEN’s GENITALS. (Sorry ladies.) Let me know how many outbreaks a year you have been getting. Email if you are interested.
2. You can now take part research that will contribute to finding out why we get outbreaks. WELL ACTUALLY, it is research into finding out why we have shingles outbreaks. But as you will know if you have read the whole of the home page, chickenpox/shingles are caused by “humanherpes virus 3” – and this virus works in much the same way as humanherpes viruses 1 and 2 (that’s the two types of herpes simplex).
Dr Neil Patel (in London) is asking for you to volunteer to come and give him a drop of blood. Marian is gave him some of hers on 9th July … and has blogged about it. We will be offered a tour of the lab on a Saturday afternoon if there is enough interest. Email if you are interested.
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.
Our own Wikipedia page
NOW DELETED BY WIKIPEDIA
The history of the HVA – why and how we started up – a bit about the creation of the stigma – you can see it on the Herpes Viruses Association Wikipedia page now! It needs someone to go in and ‘edit’ into the text all the links to other pages of Wiki. Whilst creating this page, it became obvious that we could add a lot more about how the stigma was invented on the regular herpes simplex page.
Donations for research
You can now support research that will contribute to finding a cure for this virus. We checked out the projects of nine different researchers in the UK and spoke to three of them. We have decided to support Dr Klenerman’s research in the Dept of Chemistry at the University of Cambridge’s Department. He explained that the first stage of his work will soon be the subject of “a nice paper on how a neutralising antibody prevents HSV entry, exploiting the novel biophysical methods that we have developed and adapted to follow viral entry”.
We hope that you will want to support his work too. You can either send your donations via our donate page and email us that it is for ‘research’. Or contact us for the details so that you can send money straight to the university for Dr Klenerman.
IPSO no better than PCO
Just below, you can read about the muddle the Daily Mail made of a story. It was about Human Herpes Virus-8 (nothing to do with herpes simplex) and cancer. The journalist thinks HHV-8 is ‘a strain’ of genital herpes – it is not! We complained to the new version of the Press Complaints Office – now called Independent Press Standards Organisation. They explained that as the story originated in the USA DailyMail.co.uk is not responsible – although if you search for “Daily Mail cancer herpes” you get the UK website. So the new complaints body is just the old one with a new name. Not interested in facts.
Cancer? No! A muddled up story explained
The journalist saw the scientific story about cancer and herpes – she assumed this was herpes simplex (genital herpes). She was wrong.
Scientists have found that one of the herpes viruses helps cancer to grow: “Experts at the University of North Carolina have found HHV-8 causes cells to divide, creating an environment that protects and nourishes tumors.”
HHV-8 or Kaposi’s sarcoma virus is known to be the cause of a skin cancer – and it is not the same virus that causes genital herpes and/or cold sores. The Daily Mail journalist thinks it is and her story is rubbish!
A baby died – newspaper story explained.
Sara Pugh’s baby became ill when she was only a few days old. She was taken to hospital but not treated with antiviral drugs because “No one knew what was wrong.” As a result, the damage to her organs and brain caused this tragic death. This story was reported in the Daily Mirror, 5 Dec 2014.
The reason this could happen is that her mum had never had herpes simplex (cold sores or genital sores). So she did not have the antibodies to give the baby in the womb. Most women do have this virus and therefore pass the antibodies to their babies to protect them during birth. And that is why this is such a rare occurrence that it makes the news! In fact, it is not known from whom she caught herpes simplex.
If doctors consider herpes simplex when a new baby falls ill during the first days of life, then antiviral treatment, as a drip, can prevent any long-term complications – the baby makes a full recovery. Marian Nicholson of the HVA comments “Whilst his death is tragic, we need to put it in context. Nearly three quarters of a million babies are born each year, only 30 develop herpes simplex in the first days of life and most of these make a full recovery.
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 had never caught herpes simplex virus, this baby did not have any protective antibodies and so was able, fatally, to catch the cold sore.” “Although cold sores are only a very small risk to newborns, I would still suggest that anyone with any sort of infection such as cold, flu or cold sores away from new babies.”
Is your local sexual health/contraception service performing well? Under the new NHS rules that ‘any competent provider’ can be commissioned to provide a service, we need to ensure that sexual health and family planning clinics are up to sratch. You can record your experiences on the FPA/Brook interactive webpage.
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.
Vaccine trial in London
In December 2012, the Amgen PR lady informed us that their report re the phase I Immunovex vaccine trial was not ready for publication. However she assured us that Amgen is committed to following pharma’s guidelines which say that the results of every trial involving volunteers (42 in this case) must be made public. This vaccine was created by the Biovex company, and Amgen has bought Biovex. Phase I is the safety stage – and, so far, the vaccine has proved safe. So it will be a commercial decision as to whether a phase II trial is undertaken. The hope is that this jab could prevent genital herpes in those as yet uninfected and also act as a treatment for people who are getting too many genital herpse outbreaks.
We are checking with Amgen at regular intervals. The doctor who was responsible for the trial assured us that they would be publishing the results of the trial… We will report when (or if) they do.
NOTE: June 2015 – Amgen have removed mention of this vaccine from their ‘pipeline’ (their list of products under development). So we may assume they have chosen not to follow up on the phase I trial.
If this website helps you, please help us with a donation. (We rely totally on donations/ subscriptions.)
Buying antiviral tablets on line
There are several websites where you can buy aciclovir or Valtrex. Check that they are UK-based and have the approval of the Health Commission. This will ensure that you are buying genuine antiviral tablets. These websites have a series of questions that you need to answer satisfactorily before they can issue the ‘e-prescription’ and sell you the treatment. Here is a link to one of these e-chemists – last time we checked, it offered very good value.
It is important to have the tablets to hand so that you can take them the moment that you notice the first signs of an outbreak. This is called episodic treatment. If used in this way they may prevent an outbreak at an important time. This could be a romantic weekend or an important exam.
If you want to take them longer term, because you get frequent outbreaks, you may wish to discuss this with your GP or a clinic doctor. On-line suppliers sell packs of tablets for ‘three months’ (actually 84 days) treatment. For more information on how antiviral tablets can help, go to Frequently Asked Questions.
Want something good on your CV? Come and do some serious fundraising for us. Either for the HVA or else for 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 firstname.lastname@example.org.
Our new website is on WordPress, I need someone to help me learn how to deal with it… Could I phone you when I have a question?
Host a meeting for members
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 in your area know about it. We will ensure that someone well-informed attends your first meeting. We can give you all sorts of advice: phone in 020 7607 9661.
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.