Posted on

Survey for people with chronic pain (such as shingles may cause)

Are someone with constant or frequent (‘chronic’) pain? Then we would like you to tell us about speed of your diagnosis and treatment.  This is a Europe-wide survey. There are just 25 tick-box questions. Therefore, we expect thousands of replies.

The survey already has over 400 responses.  It closes mid-April and the final report will presented at a conference in Malta in June.

One friend of mine will be filling it in re her chronic migraines and another pal has reported re her fibromyalgia. Add your experiences, please!

Why is it on this news page? The HVA’s subgroup is called the Shingles Support Society.  Shingles is a painful condition mostly affecting the elderly. As well as director of the HVA and SSS, I am the UK representative for Pain Alliance Europe.  This is an umbrella charity dedicated to raising awareness of chronic pain. And, of course, improving services for the people affected. PAE represents 33 charities from across Europe.  So it has a louder voice than any one charity on its own.  Get clicking!

Marian Nicholson, 10-3-2017

Posted on

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”

Posted on

Dates for the diary

“Dates for the diary” now has its own tab – go to https://herpes.org.uk/events.

We organise a support groups/social get-togethers – mostly in London.  Email for details of one in Reading  on Sun. 22 January, Scarborough Thurs. 16 February.  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 – Saturday, 18 February – are extremely popular with people commenting afterwards “I wish I had gone to one of these sooner…”

And a formal seminar – 25 February, Saturday pm – 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.

Posted on

Are you interested in taking part in research?

  1. Herbal treatment.

    Volunteer to test new melissa treatment (the herb ‘lemon balm mint’). Free sample sent to you. At present we are testing it on MEN’s GENITALS (sorry ladies)  AND ANYONE’S FACIAL COLD SORES.  Email us with the number of outbreaks a year you get.

  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 (in London) is asking for you to volunteer to come and give him a drop of blood. Email if you are interested.

    Marian gave Dr Patel some of her blood on 9th July … and has blogged about it.

Posted on

What You Get in the Current Magazine

Winter 2017 edition of Sphere

  • Currently there are many vaccines being worked on – we report on six that have reached the stage of being tested on people.  We give more detail on two of these vaccines which are currently being looked at as vaccines to treat genital herpes.  But we warn readers that none of these herpes vaccines has reached the phase 3 stage.  Only then can we start to hope that a it might reach patients (or their partners).
  • You can read comments from people who attended one of our “Moving On Days” – half the members who attended the the event in May are now in a relationship.
  • Why the ‘conspiracy theory’ is wrong
  • What happened to the baby whose face was covered in ‘cold sores’
  • We offer you New Year’s resolutions from our patron Dr Phil Hammond
  • Improve your ‘resilience’, improve your life.
  • How to make aciclovir work (if you don’t think it helps). It’s quite simple if you follow our guidance. Read a summary of treatment – and a reminder of the great melissa cream.
  • Free for men: try ‘Target’ a new melissa serum, we are offering you a free trial.
  • And we always print a personal story – in every magazine.

Continue reading What You Get in the Current Magazine

Posted on

Potential vaccine?

A potential vaccine?

We have been reporting on Dr Bill Halford’s candidate vaccine in Sphere for years. (I even spoke to him on the phone.)  It is an interesting one, because it is different from the others and it is more like the successful chickenpox vaccine.
Now his first vaccine trial with just 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 18 October 2016

Posted on

Volunteering

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 info@hva.org.uk.
Continue reading Volunteering

Posted on

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

back to top

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

back to top

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

back to top

Posted on

Helpline stories

What is it?

It amazes our new helpline volunteers how often a caller phones to describe their symptoms and get the helpliner to say what they have. There are 24 ‘differential diagnoses’ that a sexual health doctor will be considering when s/he is shown what might be genital herpes.

We don’t list these on our website as we don’t want to encourage self-diagnosis.  After all, they don’t give a medical student a link to a website and say ‘Now you can diagnose sexually shared conditions (SSIs)”!

Impetigo is one of the conditions that can be confused: the Center for the Biology of Chronic Disease (CBCD) in the USA has highlighted the difference between an infection with herpes simplex virus type 1 or 2 and impetigo, a bacterial skin infection.  Check the vesicles (small, fluid-filled sacs) on the skin. As time goes on, if the vesicles become cloudy and ultimately result in crusts that are honey colored, the infection is more likely to be herpes. The CBCD says “When an impetiginous pustule is unroofed, it is noticeably filled with pus. A herpetic lesion may appear to be pus filled, but when it is unroofed, only a scant amount of clear fluid is found.” Herpes simplex is often recurring. In other words, if this is something you have had before it could be herpes simplex.

This is not the case with impetigo.  Antibiotics are usually prescribed for an impetigo infection, whereas herpes simplex can go  away by itself, or a person may use Lomaherpan or take antivirals.

Surprisingly, eczema is another skin condition that has been confused with genital herpes. Eczema can affect skin on any part of the body. One of our members phoned me to say “Marian, I am not renewing my subscription [after two years] as it was eczema all along.”  So if you have not been diagnosed – don’t guess, go to a sexual health clinic.  Sxt.org.uk lists them all.
Marian Nicholson 8-8-2014

What’s new in January – and does boozing cause sex?

Happy New Year. Have you had your SPHERE magazine? Do you agree with the cover article about genetics – in other words, do you have family members who get cold sores (anywhere)? Check page 14 for the update on the legal case.

Did the stress of Christmas bring on an outbreak? Two years in a row, it affected me! I remember bagging the left corner of the sofa, so I could sit leaning on the left cheek of my bum as the other ached so much… That was how my prodromal symptoms showed themselves at that time. Now I use Lomaherpan immediately and it stops the symptoms.

Our helpline is inundated after the Christmas holidays – and not just ours, other sexual health/contraception helplines report the same. People have ‘made a mistake’ and want to ask if they are at risk, how long before they notice symptoms, how to explain a new case of genital herpes to a long-term partner. We are good at that! Call 0845 123 2305 if you need advice or information. And call 020 7607 9661 if you are interested in becoming a helpliner (You must have a landline.)

Question to you all: David Cameron has said that by cutting boozing, there will be a fall in ‘unplanned sex’ in other words, sex without condoms or contraception that could result in pregnancy or STIs. Do you think that boozing is the cause of the sex? Or do you think that it is the other way round? That is, people want to give themselves the excuse to have sex and so they drink because then they can say/think “I didn’t mean it, I was sloshed.” Comment in an email and I will upload them.
Marian Nicholson 6-1-2012

Helplining

The helpline was busy today… Quite a few people phone up and say “I have talked to you before” and then I have to tell them them that I cannot remember! There are too many people and not many ‘personal stories’ are so different that I will remember the details! Quite frankly, it is probably a good idea I don’t remember and they can tell me their story and ask their questions all over again… In the early days when I was in a state about it, I needed lots of ‘talks’ about… So I reassure them that it is OK for them to call again and to talk to all our helpliners (Tues, Wed and Thurs we have volunteers – Monday and Friday Nigel and I answer) as they will all have a slightly different way of expressing themselves.

Marian Nicholson – 6th October 2010