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Information on herpes for our subscribers

Autumn 2023: as usual SPHERE magazine is 16 pages in A4 print version, and the e-version is in large text, single column, for easy reading on a screen.

Subscribe to have it sent to you by post or by email

The cover of the summer magazine
Text and photo of Nigel with Dr Jenny

Each magazine has pages of medical research on
this virus, and new facts about herpes simplex
treatments and herpes vaccines. In this magazine:

Articles on the five different vaccine projects going on around the world. One is recruiting in many sites in the USA.

A report from our representative at the doctors’ conference in June 2023.

How to read the internet – with suspicion?!

Self-help reports from readers… And lots more!

Get it sent to you by post or by email

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Rational Vaccine trial, in UK

Update 21st June 2023

Nothing new to report on the Rational vaccine trial. They had thought they’d need to interview 200 people. But after they had collected the experiences of 60 volunteers, they considered that that was enough. These people were all people who had found that the antivirals did not suppress their symptoms and they were keen to try something different.

We were told that Rational Vaccines’ researchers would write up this report. But nothing has been published. The doctors who were briefing the patient advocates – our director Marian Nicholson in the UK and a New York patient advocate – have fallen silent.

We await the next stage of their research with interest. Perhaps they will actually inject people at some stage? We don’t know when.

Read the background to this research below…

No more volunteers needed, now.

Rational Vaccines has started their trial with a survey in UK. Anyone following the research that is being done into herpes simplex will be glad hear this. After this stage, they will move onto the actual injection stage…

We know that the possibility of a vaccine has long been hoped for. The research will find out, firstly, can the vaccine treat people having innumerable recurrences and, secondly, prevent uninfected people from being able to catch herpes simplex. This is a live attenuated virus vaccine – like the ones used to prevent chickenpox and shingles.

The Rational Vaccine company has started trials in the UK. These are based at the Royal South Hampshire Hospital in Southampton and at the Chelsea and Westminster Hospital in London.

However, the exact venue is not very relevant. For this stage, they are collecting information by phone or video calls from 200 people. People taking part will be asked the details about how many outbreaks they are having, how they treat them, how good they feel the treatment is. This will be to prove that there is a need for a better way of treating genital herpes. Then in due course, the researchers will choose some couple of dozen people to actually get the vaccine. (They now have more than 200 volunteers.)

To follow the Rational Vaccines trial news

To follow the Rational Vaccines trial news, and indeed news of other trials around the world, you can check back on the news page. Or subscribe for prompt alerts.

This page was published on 2-9-2022 and last updated on 24-7-2023

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Child dies of ‘herpes’ – but not herpes simplex

BBC South East reports that “Raffy Holliday, from Deal in Kent, tested positive for the HHV6 strain in hospital, and he died in March,” but this was not herpes simplex: parents don’t need to be worried about this.

The reporters don’t explain that HHV-6 – commonly called roseola – is not ‘herpes’ in the usual sense. When anyone says ‘herpes’ people think of genital herpes. The reporters didn’t check to find that there are 9 different conditions caused by 9 different herpes viruses. Other well-known herpes viruses are chickenpox (HHV-3) and glandular fever (HHV-4).

Infections with human herpesvirus 6 (HHV-6) are very common. In fact, almost 100% of us will have encountered it. There are two types of HHV-6 (A and B) and the one Raffy had will have been HHV-6B, not herpes simplex. Roseola is common childhood disease expected to resolve without treatment. The child may have high fever for a few days, and a mild skin rash may develop. Sometimes, paracetamol or ibuprofen might be given.

But Raffy had leukemia. This means his immune system was not able to function in the normal way. Parents of children (who do not have such a serious condition) do not need to worry if their children develop roseola. They will be well in a few days or so…

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Mothers having C-section – two deaths

“Mothers should not be alarmed by these tragic rare cases – a repeat is almost impossible”, says Herpes Viruses Association

For a woman to be infected with herpes simplex during a Caesarean-section is one of the rarest possible medical accidents. For it to happen twice in the same geographical area required a unique set of circumstances that are unlikely to be repeated. Lessons have been learned and treatment guidelines will be updated to prevent another similar tragedy.

The Herpes Viruses Association was shocked to hear that two women died from internal herpes simplex infections following disease transmission via C-section. We extend our condolences to the families affected.

Herpes is common – for most it is a minor skin condition

Herpes simplex (HSV) infections are common and in almost every case are caught during direct skin on skin contact. It is almost unheard of for these viruses to be caught during any kind of medical procedure and strict protocols are adopted to prevent this.

Herpes simplex is universal. More than two thirds of the world’s population carry the most common type, known as HSV-1[1] which places it close behind chickenpox as an almost universally acquired virus in humans. The other type is HSV-2.[2] Either type may be caught facially (cold sores) or genitally (genital herpes). It is also possible for either type to infect the hand or finger. This is called a herpetic whitlow and is seen less often than infection in other parts of the body.

More than half of pregnant women will have come into contact with HSV-1 before
conceiving. Their babies, from month 7 onwards, will acquire all their mothers’ antibodies which will protect them during birth and for several months.

If a herpes simplex infection is suspected in either a mother or her baby, prompt use of antiviral treatment should ensure a positive outcome.

In the tragic cases in Margate and Ashford, Kent, neither woman had a prior HSV-1 infection and therefore neither of them had herpes simplex antibodies. This made them both vulnerable to the accidental internal acquisition that turned out to be fatal.

Why was a common cold sore infection fatal in these cases?

Herpes simplex is normally a virus that infects skin and nerve cells. Typical symptoms are painful skin blisters and sores that make diagnosis straightforward. These women were infected internally, so there were no observable symptoms, and the virus was able to spread without affecting the skin.

Without the telltale blisters on the skin, herpes simplex was not suspected, and the antiviral treatment was not given.

Future improvement to guidelines

The Herpes Viruses Association is pleased to learn that the Royal College of Obstetrics and Gynaecology is going to recommend treatment with antiviral medication for any ‘mysterious’ illness in mother or baby. This is a highly safe precaution and should prevent any similar tragedy in the future.

– ENDS –

NOTES TO THE EDITOR

The Herpes Viruses Association exists to promote better mental and physical health with regard to the family of herpes viruses.  Its aims are:

  1. To provide information to the public, to medical professionals and to the media.
  2. To encourage the development of new treatments for herpes simplex.
  3. To tackle stigma and the unnecessary trauma associated with the condition.

References:

1. WHO report on herpes simplex type 1: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0140765 2.  WHO report on herpes simplex type 2: https://www.scielosp.org/article/ssm/content/raw/?resource_ssm_path=/media/assets/bwho/v86n10/a17v8610.pdf

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Free prescriptions

Since 2020, everyone can have free prescriptions for treatments for all STIs and HIV.

Make sure any antiviral prescription from a GP is endorsed with ‘FS.’ There is no need for the GP to write anything else on it.

From the prescribing team in the Dept. of Health and Social Care:

This is to “enable prescribers to endorse the FP10 prescription form to show the pharmacist that the item(s) prescribed are for free-of-charge treatment for a sexually transmitted infection (STI)… Because we understand that treatment for STIs is increasingly being provided by prescriptions from GPs and we want to make sure that people aren’t charged a prescription charge for this treatment which the law says must be given for free.

A new prescriber endorsement ‘FS’ has been introduced for ‘free supply of sexual health treatment’ to enable prescribers to endorse prescriptions for STIs to indicate to dispensers that the patient should not be charged.” Read the details on https://www.nhsbsa.nhs.uk/changes-fp10-nhs-prescription-form – the bottom bullet point deals with FS.

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Does the shingles vaccine help with herpes?

The question “does the shingles vaccine help with herpes simplex” is perhaps relevant. Herpes zoster is the medical name for shingles, or it can be called humanherpes virus ‘type 3’. It is enough like herpes simplex, that it is treated with aciclovir or other antiviral drug. If you do think you may have shingles, it is important to get the drug for shingles very quickly, within 3 days. Only prompt treatment will help control the duration of symptoms.

Shingles is the name for a recurrence of chickenpox (herpes varicella). Following infection, chickenpox virus remains in the body, hiding in neural ganglions. Shingles can happen when you are run down, ill, stressed, or following a physical or emotional trauma (a fall or the loss of a loved on). Although chickenpox affected the whole body, luckily shingles just appears in one small area, usually the back or chest. See more on our Shingles Support Society website.

A vaccine for shingles, Zostavax, is been provided to people in their 70s for the last ten years. This is because in older people the is a greater risk that nerve pain will continue after the shingles blisters have cleared up. So plenty of people who get repeated herpes simplex symptoms will have benefitted from Zostavax. If it does help control herpes simplex virus, these people will have noticed that their recurrences have stopped.

Some people have found it helps

And we have indeed had people tell us that following the shingles vaccine, their herpes simplex symptoms are noticeably less frequent (or have stopped). Now, that could just be coincidence. We know that over time, recurrences are expected to become less frequent. But it is nice to think that the shingles (herpes zoster) vaccine is helpful against herpes simplex.

Let us know (at [email protected]) if you notice that you are having more outbreaks since Zostavax, or fewer…

In any case, if you are offered the shingles vaccine – take it! Covid vaccines

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Herpes helpliners’ talk at conference

Herpes helpliners were invited to talk to the doctors at the annual conference of the British Association of Sexual Health and HIV in Sheffield in 2022.

Our topic was “How to help your patients: you need to de-Google them.” The talk was presented as a chat between two helpliners. You can see the text we prepared to train ourselves – and the slides we used at the same time on the attached page.

Naturally, on the day, we didn’t read from this script. But because we had rehearsed several times, the talk followed this flow…

Helpliners talk to doctors about herpes
Helpliners talk to doctors about herpes at their conference in 2022.
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Eyesight: getting a ‘gritty feeling’ could be a ‘serious’ eye condition – do not ignore

A story in the Daily Express on 2nd August 2022 described how a facial infection can reactivate in the eye. This ocular herpes needs to be treated.

“Ocular herpes usually occurs when a previous infection with the virus reactivates and spreads to the eye. Most people will catch the herpes simplex virus as children, but will not notice it as there are often no symptoms.”

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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 a PDF of this article.

An article by Nigel Scott

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?  

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Trial volunteers [TRIAL NOW CLOSED]

Last year, our trial volunteers took part in a scientifically run placebo-controlled, double-blind trial to see if the ‘EBDT powders’ from Vimuneco would improve their immune response so that they stopped getting outbreaks. The trial showed it had a minor effect, but the powders were very hard to use: they had to be absorbed under the tongue.

New trial

The company has reformulated the treatment as a liquid and there are still some places still available on the trial, so you can take part. You won’t know if you are using the placebo or the ‘real thing’ during the trial. But you won’t miss out as afterwards you will be offered the ‘real thing.’Vimuneco's tree

Send an email to [email protected] if you would like to take part.