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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!

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What You Get in the Current Magazine

Winter-Spring 2018 edition of Sphere

Get it sent to you by post or by email

  • Heavy duty research and a new drug development
  • The grass is greener – or is it? Existing treatments work for most us – if you know how to use them
  • Ignore the word ‘cancer’ in any herpes story.
  • General health and psychology issues:
    Why 10 eggs isn’t enough
  • Think about improving your self-esteem – Come to next ‘day’ – see what happened with Aimee
  • Interesting tales from the HVA office
  • Join the committee (be a trustee) – yes, you!
  • The mayor of Islington with our star helpliner…
  • Important: sign the petition to save STI services from £ cuts.
  • Buy Target lotion at half price
  • And we have a long section of My Story from Robert

Continue reading What You Get in the Current Magazine

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Potential vaccine?

A potential vaccine?

We have been following the development of Theravax from Rational Vaccines.  This is the work of Dr Bill Halford’s team.  (I recently spoke to their business manager on the phone.)  This is an interesting vaccine, because it is different from the others currently being worked on and it is more like the successful chickenpox vaccine.
This vaccine was being given in St Kitts, in the Caribbean, on a “named patient basis”.
The results of the first trial involving 17 people has gone public.  Already the Daily Express has hailed ‘cure on the horizon’. However this is only a phase 1 trial, so there is a long way to go yet! (Phase II and phase III before it can be sold – at least 4 years, If all goes well.) And remember there was the GSK vaccine that failed at phase III.
He says: “This early-phase trial revealed TheravaxHSV-2 elicited stunning reductions in herpes symptoms among trial participants. Specifically, 17 of 17 participants who received the 3-shot vaccination series indicated the live TheravaxHSV-2 vaccine was more effective in reducing their genital herpes symptoms than antiviral drugs. On average, participants reported a 3.2 fold reduction in their number of herpes-symptomatic days per month” compared to taking antiviral drugs.”
We wait and see…
Marian Nicholson updated 17 October 2017

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‘Talking to a New Partner’ – Come to an Event That Will Give You Confidence (and Information)

We run these days to help you develop confidence, information, skills – and to meet others in the same boat.

Nine 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.”  They are every three months.
Continue reading ‘Talking to a New Partner’ – Come to an Event That Will Give You Confidence (and Information)

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Are you interested in taking part in research?

  1. Herbal research?

    See for the advert from a treatment manufacturer – he wants more people to try his improved formula.  A man who tested an earlier formula is totally thrilled at the results: much better than anything else he’s tried, and he’s tried a lot!

  2. 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 page about all the herpes family, “humanherpes virus 3” causes chickenpox/shingles  – 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 is asking for you to volunteer to come and give him a drop of blood. He is at UCL hospital, central London. Email if you are interested.

    Marian gave Dr Patel some of her blood  … and has blogged about it (see page).

  3. If you are in Gtr Manchester area:

    A PHD student at the University of Manchester is investigating the neural mechanisms underlying chronic widespread pain using neuro-imaging techniques.

    She needs to find people to take part in this trial in Manchester.  The study involves 2 visits to Salford Royal hospital, for a 30 minute MRI scan and an EEG study.  She is reimbursing for time and minimal travel costs. She is looking for anyone who has experienced pain in the last month lasting more than 24 hours, including Fibromyalgia, as well as healthy pain free participants.

    You can see contact details on her advert:

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No “Link between herpes in pregnancy and autism”

You may have read some headlines in the Sun or the Mail, etc., which report “‘Women infected with herpes while they are pregnant are twice as likely to have a child with autism.” This headline is prompted by a study looking at whether maternal infections during pregnancy are associated with the risk of neurological developmental disorders such as autism spectrum disorders (ASDs).

However, these scare stories refer to one small area of the findings. In fact, the report was not able to confirm the association between maternal infections and autism in children. The suggestion that herpes simplex infection is a risk factor for autism was based on just 14 women, so it not reliable.
Continue reading No “Link between herpes in pregnancy and autism”

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Dates for the diary

“Dates for the diary” now has its own tab – go to

We organise a support groups/social get-togethers – mostly in London. The hosts for these events are people with herpes.  You can meet others with the virus, share experiences…

We hold informal, interactive days when you can learn how to talk to a new partner.  These events – next one on Saturday, 17 February, 2018 – are extremely popular with people commenting afterwards “I wish I had gone to one of these sooner…”

And a formal seminar – once a year – with a doctor who is expert in genital herpes.  We always ask the doctor to be sure to allow time for answering all your questions.

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How herpes got its stigma

“It is easier to fool people than to convince them that they have been fooled.”
– Mark Twain

(You can download the article on stigma as a PDF if you wish.)

For anyone in the twenty first century it is hard to believe that there was a time when ‘herpes’ was not a stigmatised and feared condition. But this is true. Less than forty years ago genital herpes was largely ignored. Newly diagnosed patients were not made to feel that a common skin condition had just ended their chance of having future relationships. Doctors knew that they were simply dealing with the manifestation of the common facial cold sore on a different site and they treated it appropriately. In the early 1980s things changed. How and why did this happen?

The history of the genital herpes stigma dates back a mere 30 years. Before then, the condition, which was first named by the Ancient Greeks, was well known to doctors – but it was not invested with the terror it commands today and the word herpes barely registered with the public.

Continue reading Stigma

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Office Work

We need a volunteer (or more than one) to come into the office to do the routine tasks of administration. (We had a great guy, but we found him a full-time paid job in this building, so we need ‘you’!)

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 – or email [email protected].
Continue reading Volunteering

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When the media gets it wrong!

Daily Mail confuses different herpes viruses

Do you know the difference between genital herpes (caused by herpes simplex types 1 or 2) and glandular fever (caused humanherpes virus 4 i.e. Epstein Barr virus)? Of course you do, but the Daily Mail doesn’t! On 20th July 2016, health writer Mia De Graaf confused these viruses and also Kaposi’s sarcoma virus (humanherpes virus 8). Herpes simplex is not, ever involved in cancer-causing activities, HHV 4 and 8 are. Simples!
Marian Nicholson 20 July 2016

Can you get herpes from a sunbed?can you get herpes from a sunbed

This story resurfaces from time to time – Daily Mail, Huffington Post, Glamour – even the BBC.  The answer is no, but this is why people believe it:

“It’s not gonna happen but there is a reason for this myth. UV light can trigger cold sores because it damages the immune system in the skin. This is why some people get cold sores when they go skiiing or to hot sunny countries. So tanning could trigger a genital herpes episode in someone who has caught it previously, because of the UV light effect. In some cases this is the first outbreak the person has noticed – up to 80% of people with facial cold sores or genital herpes are unaware that they have been infected, though they may get an occasional minor spot or blemish – not enough to alert them. So the tanning bed triggers an obvious herpes episode – what does the person think? They think they’ve just caught it in the salon. The reality is they may have had it for years and not realised before.”

Nigel Scott 20 July 2016

Cold sores and Alzheimer’s

The papers have reported ‘herpes causes Alzheimer’s’. Err, no! The truth is that some scientists think that having various different infections including facial infection with herpes simplex contributes to the likelihood of Alzheimer’s but only if you have the APOE genotype. This explain why, when so many people have had the various infections they mention, only a small proportion develop this dementia.

Quote: “We are saying there is incontrovertible evidence that Alzheimer’s Disease has a dormant microbial component. We can’t keep ignoring all of the evidence,” said Douglas Kell, a professor at the University of Manchester’s School of Chemistry and one of the authors of the editorial.

The scientists named the herpes virus, chlamydia bacteria and spirochaete bacteria as possible causes of the disease. They argue in the editorial that antimicrobial drugs might help stop the progression of dementia. The experts said viruses and bacteria are common in the brains of elderly people.

Other scientists have stated they disagree with these findings!
Anyway, most of us reading this blog, don’t have facial infection, do we?
Marian, 10 March 2016

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Which herpes?

Most journalists know little or nothing about ‘herpes’ so we frequently see news reports that misrepresent scientific discoveries. This is particularly sad when the stories appear in publications that are written for health professionals. You might assume that specialist journalists have some knowledge of the area they cover. Sadly, this is often not the case.

If news is about ‘herpes’, it will always get readers. Just put ‘herpes’ in the headline and – job done. Right? Wrong! There are (at the last count) nine human herpes viruses. They are all different. They are not ‘strains’ of herpes. They are different viruses. To call them strains is as ridiculous as calling an elephant ‘a strain of mouse’. (They are both mammals, so they both have a common ancestor if you go back in time, but that is as far as it goes.)

So, to repeat, there are nine different herpes viruses. If the story is about chickenpox or shingles (caused by human herpes virus 3), there may perhaps be no mention of ‘herpes’. Many of the other herpes viruses are not so lucky and may be simply called ‘human herpes virus 8’, for example. This makes them ripe for exploitation by stupid journalists and editors. Once upon the time The Sun carried a story captioned ‘Pope has herpes’, above a paragraph about a bout of glandular fever (human herpes virus 4). You get the picture… And as far as we know, the Pope did not have genital herpes (caused by human herpes virus 1 or 2 – these are known as the herpes simplex viruses).

The latest example of this type of sloppy journalism appeared in ‘Medline Plus – Trusted health information for you’. The headline was ‘Herpes Virus Tied to Angina Risk, Study Suggests’. What did you think when you read this?

It is not until the fourth paragraph that we discovered that, “The condition can develop before conception, when an egg or sperm cell becomes infected with a strain of herpes virus that causes the common childhood disease known as roseola.” Roseola (human herpes viruses 6, 6A or 7) is caught by almost everyone before the age of two. It is not ‘a strain of herpes virus’ – it is a virus in its own right and has nothing to do with the herpes simplex viruses.

In the light of this, you might think that a headline like, ‘Roseola Tied to Angina Risk, Study Suggests’ might have been more accurate, but then fewer people would have read the article, because it wouldn’t have sounded so alarming – although roseola is probably even more common than herpes simplex. It would be astonishing if anyone who reads this has not had roseola.

As medical knowledge increases, we hear various stories about different herpes viruses. All these viruses stay in the body and some of them may have an extra effect in some of the people who catch them. Fortunately, the viruses responsible for genital herpes and cold sores (human herpes viruses 1 and 2) hide in the nerves and infect skin cells. They are extremely unlikely to do any more than this, so if we are going to worry about ‘herpes’, it is the other human herpes viruses, like roseola, that we should be paying more attention to. They deserve their own day out in the public glare.

So please let’s leave ‘herpes’ out of the headlines, unless it is herpes simplex we are talking about.
Nigel Scott, 19-08-15

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50th anniversary of the Epstein-Barr virus

Dr Anthony Epstein (along with Mr Barr) found EBV. This virus is HHV4 – humanherpes [that’s the correct spelling] virus number 4. To celebrate this, Keble College, Oxford will have a conference in March 2014.
EBV is very different from HSV1 and HSV2, which are herpes simplex types 1 and 2. EBV does not cause any blisters/spots on the skin, but instead causes glandular fever – an illness that affects the whole body. It is passed on in saliva, so it has been nicknamed ‘the kissing disease’. It is extremely common, and there is no average frequency of recurrences, which most often just give the affected person a day or two of malaise. See their flyer for the event.
Marian Nicholson 1-11-13

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