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Charity’s director awarded an MBE honour

Nigel Scott, HVA trustee, reports: Photo of Nigel Scott

Marian Nicholson, the Director of the Herpes Viruses Association, has been honoured with Most Excellent Order of the British Empire (MBE) in this year’s Birthday Honours List, “for services to people diagnosed with herpes and shingles.”

Marian has been running the HVA since 1995, almost thirty years. Before that, she was supporting the charity as a volunteer. During that time she has devoted thousands of hours in support of patients and the charity’s wider work. She has always gone well above and beyond the what anyone in a regular job would do.

It is not an exaggeration to say that the HVA owes its continuing existence, in no small part, to the diligence and enthusiasm of Marian.

“It’s an honour for the charity, not me.”

Marian was surprised to receive the award, “The night I came home from the HVA office and found the envelope waiting for me, I couldn’t sleep. The excitement kept bubbling up. It’s a wonderful endorsement of my efforts, of course. But I see it primarily as official and long overdue recognition of the importance of the HVA and the work it does to reassure and inform patients.”

“I requested a change to the citation for the MBE. Instead of services to people with herpes, I asked for ‘For services to people diagnosed with herpes and shingles.’ Three reasons for this: 1. We know that most people with herpes simplex don’t know they have it and so don’t need/ask for our help. 2. Mentioning shingles in the citation will get people thinking about the association of the two. And 3, it also gives the poor people who I meet at the Palace, all the officers in elegant uniforms and other recipients of awards, something to talk about if they fear my mentioning the word ‘sex’!”Photo of Marian Nicholson

Published 15 June 2024

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Two herpes vaccine trials

You wait for years for a herpes vaccine trial to be run in the UK and then two turn up at once.

Herpes simplex

Until February 29th, you have a chance to join the GSK vaccine trial which is being conducted in hospitals in Brighton, Liverpool, central London and Southampton. However, at this stage you might have to go on a waiting list.

The waiting list is worth being on because the first thing that participants will be asked to do, is to swab themselves twice a day for 28 days. This is to prove that they can comply with the requirements of the vaccine trial. As people drop out, because they cannot remember to swab themselves, then more volunteers will be recruited to take their places.

To qualify, you need to be 18-60 years old; to have had herpes simplex type 2 for at least one year; and to have had between 3 and 9 recurrences in the last year. or, if you are on suppressive therapy within 3 months before the first visit, prior to initiation of suppressive therapy.

You can see the full details of the trial on National Library of Medicine (USA) trials register: https://www.clinicaltrials.gov/study/NCT05298254?cond=NCT05298254&rank=1

If you are interested, phone the trial co-ordination centre on 0208 990 4466. They will be able to give you contact details for the centre that could suit you. Remember, you will need to visit the centre many times (I’m guessing around 5 times), so the centre will need to be somewhere you can get to.

Herpes zoster (shingles)

The name of the second herpes vaccine trial is “ZostaFluCov.” Herpes zoster – “Zosta” – is the name for a recurrnce of chickenpox, commongly called shingles. This trial is to find out how acceptable it is to give people over 50 the new Shingrix vaccine against shingles at the same time as giving them the seasonal flu jab and the Covid booster.

This is an opportunity to get the shingles jab early! The NHS is only giving the Shingrix vaccination to people as they become 65, and people in their 70s.

The trial is being done in the following locations. (They may add more, and if so I will be back to update this list.)

  • North Bristol Trust
  • University Hospital Bristol and Weston
  • Guy’s and St Thomas
  • St Georges
  • Sheffield
  • Royal United hospital bath
  • Hull
  • South Tees
  • Gloucestershire
  • Marine Lake (the Wirral)
  • Southampton
  • Pier Health Group (Weston-super-Mare)

You can find out more about this trial – which involves about 5 or 6 visits to the research clinic – by visting the central organiser’s website at ZosterFluCOV (bristol.ac.uk)

As with the previous trial, it is important that you can visit the site repeatedly. You will have to make a minimum of 3 visits and more likely 5. So you will need to be able to get their easily!

Covid vaccines
The herpes medication and the COVID vaccines

Post published on 13/02/2024

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Information on herpes for our subscribers

Winter 2024: 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 

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

An interview with one of the top “herpes Influencers” – first half in this magazine, second half next time.
When it comes to medication or vaccination: How good is good enough?
Let’s think about asymtpomatic shedding…
Building confidence re this issue.
Could cold showers make a difference?
And lots more!

Get it sent to you by post or by email

Continue reading Information on herpes for our subscribers

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Are they working on a cure for herpes?

You may see ‘Are they working on a cure for herpes?’ on forums and in internet questions.

The answer is a resounding “YES.” The medical world is well aware that there area many people who have too many recurrences. And some of them know how badly the ‘idea of having herpes’ affects society – especially in America. There are fortunes to be made…

Can we guess when a cure for herpes might be available? NO, WE CANNOT. There is no way to know when a breakthrough will occur. So, do not put your life “on hold” until they invent something new. Learn to live in harmony with the virus. Our resources will enable you to do just that.

New reports

Weekly, the HVA is sent links to newly published scientific articles which include the word ‘herpes’. We get between 23 and 156 each week. Some are about herpes varicella or herpes zoster – but plenty are about herpes simplex too.

Most papers report research in silico (computer based i.e. “in silicon”), or in vitro (“in glass” i.e. using cells growing in the laboratory). We occasionally report on these for the monthly updates our subscribers are sent.

Occasionally, the research reports working in vivo (in living organism) and this is when we start looking seriously at their work.

What kind of research is being done on on a cure for herpes?

Continue reading Are they working on a cure for herpes?
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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

Continue reading Rational Vaccine trial, in UK
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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.

Continue reading Free prescriptions
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It’s not JUST the cold sores that increase the chance of Alzheimer’s!

Dr Ruth Itzhaki

Dr Ruth Itzhaki has been working on a possible link between cold sores and the development of Alzheimer’s for a long time.

Now she is suggesting it is time to investigate the use of antivirals in mid-life, with the view of preventing Alzheimer’s later on.

She says “We discovered in 1991 that in many elderly people HSV1 is also present in the brain. And in 1997 we showed that it confers a strong risk of Alzheimer’s disease when present in the brain of people who have a specific gene known as Apoe-e4.”

She adds ”The likelihood of developing Alzheimer’s disease is 12 times greater for Apoe-e4 carriers who have HSV1 in the brain than for those with neither factor.”

Continue reading It’s not JUST the cold sores that increase the chance of Alzheimer’s!

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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