Author: Marian Nicholson

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

Herpes zoster (shingles)

Recruiting started again in the autumn 2024 for a “herpes” vaccine trial is “ZostaFluCov.” This is for herpes zoster – “Zosta” – is the name for a recurrence of chickenpox, commonly 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)

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!

Herpes simplex

Until February 29th 2024, 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 020 xxxx xxxx (trial has finished recruiting.) 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.

Post published on 13/02/2024 – re-edited and republished 18/11/24

There is one other ‘good’ herpes organisation, apart from ours… The New Zealand Herpes Foundation has just issued a series of videos. They are GREAT.

There are five clips aiming to debunk herpes stigma.

Be sure to watch to the end of no. 1 “What is herpes”.

And the last one, no. 5, really packs a punch.

The New Zealand Herpes Foundation were given a legacy with the proviso that it must be use to destigmatise herpes. They’s surely done their benefactor proud!

Dated: 18-10-2024

Nigel Scott, HVA trustee, reports:

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’!”

Published 15 June 2024

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/sites/default/files/2020-01/DHSC_Changes_to_the_FP10_guidance_Jan2020.pdf page 4 deals with the FS service.

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

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?

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

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…