What we do:
The Herpes Viruses Association (registered charity 291657) helps to improve the lives of people struggling with herpes simplex by:
- Helping people to understand the genital herpes and put it into its proper perspective as a common skin complaint.
- Running three drop-in session per month: on Zoom and in London. Herpes support groups allow people to talk about this highly stigmatised condition with others who empathise.
- Providing leaflets on the most common herpes questions such as ‘How to protect my partner‘, ‘Talking to a new partner‘ and ‘Pregnancy and childbirth‘. Subscribers can choose from 12 leaflets.
- Publishing a quarterly journal SPHERE. This covers everything from research news to articles on stress management and our social events. See list of back articles.
- Running trials to find out which complementary treatments have a useful effect.
- Publishing the results from our questionnaires about the experience of living with herpes simplex.
- Supporting and encouraging local groups and meetings around the country.
- Training and supporting the volunteer helpliners.
- Providing a speaker for the training sessions “Helping you to Help your Patients with Herpes” for staff at sexual health clinics. Send us an email to book a session.
On a wider front the Herpes Viruses Association is also concerned with:
- providing information and advice to those who have symptoms of herpes simplex, the public and the medical profession.
- encouraging a calmer, less hysterical approach to what is usually a minor skin condition.
- correcting misleading coverage of herpes simplex in the media.
- promoting a more accurate public awareness of the condition;
- working with other organisations to reduce the stigma surrounding all STIs and promote a more mature approach to sexual health.
- answer the helpline / advice line.
- organise local groups and social events – relaxed, informal get-togethers which have been attended by thousands of people over the years. Members who attend find them supportive, informative and enjoyable.
- pilot read the materials we provide, in line with The Information Standard protocol.
- help us to improve our website and other services – we need more young people on our Executive Management Committee – and more BAME members – and more men!
Who writes the Herpes Viruses Association’s website
Staff at the Herpes Viruses Association (HVA) write this website – see our staff below. They monitor worldwide research into treatments and vaccines, infection rates, and studies on the value of complementary therapies. Since 1985, they have been providing evidence-based information for a condition that has been, and continues to be, comprehensively misrepresented by most other sources.
In August 2011, the HVA received accreditation from the Information Standard. This is a ‘kite-mark’ system run by the NHS. Organisations which provide health information have to show that they have a carefully evaluated procedure. This ensures that they provide evidence-based and unbiased information. Also, the leaflet or web page must be pilot-tested on a group of readers to check that the language used can be easily understood. Finally, the finished leaflet or webpage must be validated by a suitably qualified doctor. You will see the Information Standard logo on various pages of this website.
The doctors of the “Special Interest Panel for Herpes Simplex Virus” of the British Association for Sexual Health and HIV support our work. We consult them on medical/clinical matters where necessary. The HVA is impartial and totally independent of all manufacturers of both drug treatments and complementary therapies.
You can send any compliments, complaints or suggestions to us: by email at inf[email protected] or by post to HVA, 41 North Road, London N7 9DP.
We have formal procedures for complaints in place and can send you these if required.
Annual Review 2023
Read the Annual Review of our activities, provided by our trustees, for the year ending 31 March 2023.
Our office has two staff. Their payment follows the average for London wages.
Marian Nicholson, the HVA’s director, has appeared in magazines, on TV and has given radio interviews. She has been living with herpes simplex since 1981. Marian edits and co-writes the HVA’s quarterly journal, Sphere (see an archived copy) and all information for patients. She trains and supports our volunteers.
Marian represents the charity on the Herpes Simplex Virus Advisory Panel – a sub-group of the British Association for Sexual Health and HIV (BASHH). This panel writes the herpes simplex guidelines for doctors.
She has given talks at various medical conferences including BASHH, IUSTI (International Union against STIs) and BAD (British Association of Dermatologists). She has had articles published in various medical journals including STI and AIDS (Nov 2020).
Marian gives talks to staff at sexual health clinics around the country: all clinics can request a training session with the PowerPoint presentation, “Helping you to help your patients with herpes”. Send us an email.
She has been a guest on many TV and radio shows, talking about her personal experience and explaining the creation of the stigma that accompanies ‘cold sores on the genitals’.
See Marian’s story in an NHS Choices video
Cameron joined the HVA as deputy director in July 2020, to run the day to day duties of bookkeeping, taking helpline calls and running of the online shop as well as representing the HVA at various medical and parliamentary meetings and events. His confident, compassionate and reassuring tone has helped hundreds of callers feel reassured following their diagnosis and his creative skills have contributed to everything from Sphere magazine to the HVA’s social media presence.
His skills as a professional video editor have come in very useful and in the summer of 2022 he produced our first video for doctors on how to speak to patients about herpes simplex, featuring Marian Nicholson, Nigel Scott and himself. See video here
He is passionate about educating those affected by the virus as well as the general public.
“The fear, shame and ridicule associated with the word ‘herpes’ is completely unwarranted and is a result of not the virus itself but greed, stigma, scaremongering and litigious thinking – societal diseases we actually should be worried, ashamed and embarrassed about, yet allow to continue because nobody addresses it.”
– August 2022.
Nigel Scott – one of our trustees
Nigel Scott retired in July 2020 after over 22 years of continuous service. He has now become one of the charity’s trustees.
Nigel’s contribution to our literature and lobbying power has been considerable and his reassuring advice to thousands of callers and visitors will not be forgotten. We are grateful that he will remain in contact if we need to call on him.
As our Information Officer, he represented the HVA at meetings of the All Party Parliamentary Group on Sexual and Reproductive Health and the All Party Parliamentary Group on Skin. In addition, he worked with other organisations that aim to improve sexual health services for patients.
Nigel will continue to give advice on potential legal cases involving herpes simplex transmission and liaises with patients, lawyers and other sexual health organisations when these arise. So, every potential case that the HVA has been involved with, has never gone to trial.
Alongside Marian Nicholson, he was responsible for creating and editing the HVA’s information resources online and on paper, including “Herpes Simplex – The Guide” as well as the charity’s quarterly journal. His article on the origins of the herpes stigma, written for Spiked online, has been widely cited across the internet.
He will continue to counsel members and callers to the helpline.
How you can help/volunteering
One volunteer is Alice:
Alice is the hostess at some London meetings. She has had this for 6 years ago having got it when she was 37. She’s been in and out of the dating scene since then so have plenty of experience of talking to partners about this. She’s a very active and actually got into hiking through HVA in a way! (If you come, you can ask her to explain that.) Like all of our hosts and volunteers, she’s friendly and non-judgemental so feel free to come along and have a chat and ask questions.
We have seven patrons
Six of them are doctors who specialise in sexual health medicine:
- Professor Michael W. Adler CBE MD FRCP FFCM
- Dr David Barlow MA BM FRCP
- Dr Brian A. Evans FRCP
- Professor Colm O’Mahony MD FRCP BSc DIPVen.
- Dr Raj Patel FRCP
- Professor Simon Barton MD FRCOG FRCPEd FRCP
We have a ‘media doctor’ who kindly helps us get our message out to the public:
- Dr Phil Hammond MB BChir MRCGP
The Executive Management Committee currently has ten members: all members of our Association. None has a professional or commercial interest in herpes simplex (i.e. no doctors or pharmaceutical company representatives).
How the Herpes Viruses Association got started
In 1981, people with herpes simplex got together to share information and to help each other as a response to the many scary stories about herpes simplex in the press. The Herpes Viruses Association became registered charity no. 291657 in 1985. We set up an office in the Omnibus Centre and we now employ two staff. About ten volunteers help us by hosting meetings, answering the helpline or assisting in the office. Over the years, we have dealt with over 100,000 enquiries from patients and health professionals.
[email protected] can give you short answers to any questions you have; or phone our helpline on 0845 123 2305. (Not a premium rate call. It counts as a local rate from a landline. Of course, mobile services may charge more).
A statement of our independence
In order to show our independence, the Herpes Viruses Association needs to be show transparency and impartiality in its relations with funders/supporters. All HVA’s activities are funded from:
- Unrestricted donations
- Charitable grants
- Sales of therapeutic materials
- Providing training regarding herpes simplex to NHS staff and the public.
We do not link our activities to commercial marketing or public relations campaigns except where this is relevant and in the interests of our service users.
HVA disclaimer and Information Standard policy
The Herpes Viruses Association website gives information about herpes viruses; especially herpes simplex (genital herpes) and shingles/post herpetic neuralgia. It does not replace a consultation with a doctor.
This information relies on the evidence and medical opinion available at the time this information was produced. We can be confident that the views expressed and facts provided will assist patients, medical professionals and journalists in increasing understanding and improving the treatment of these conditions. Other authorities may differ in their detailed advice on certain points.
Every effort has been made to ensure the information we provide is accurate. However, the Herpes Viruses Association cannot be held responsible for the site’s accuracy or for any actions taken on the basis of the information provided on the site or for any loss suffered due to reliance on that information. We cannot guarantee uninterrupted access to this website or the sites to which it links. We accept no responsibility for any damages arising from the loss of use of this information.
Information Standard disclaimer
This programme has ended, but the HVA still follows the established protocol to ensure quality of the information provided.
The HVA shall hold responsibility for the accuracy of the information they publish. Neither the Scheme Operator nor the Scheme Owner shall have any responsibility whatsoever for costs, losses or direct or indirect damages or costs arising from inaccuracy of information or omissions in information published on the website on behalf of the HVA.
The blog page (herpes.org.uk/blog/) contains user-generated information and is excluded from the scope of certification.
When was this website last updated?
We last updated this site on 5-12-2023.