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GPs like the Herpes Viruses Association

true-or-false-about herpes- may-2010I helped at the dermatology patient groups’ stand at the Annual Conference of the Royal College of GPs in Harrogate, early October.

The HVA’s ‘True or False’ leaflet was the most popular leaflet on the table – by a long way. (Except for the very, very popular guide on ‘how to recognise skin cancer’ one.)

GPs commented “I like giving out your genital herpes information leaflet – it is so reassuring” and “This is such a good leaflet for patients” and “I’ll take some leaflets to display”.

Some stopped to discuss herpes treatment, herpes counselling, and one even discussed her own genital herpes with me!

dsc_0329-2 Marian and LesleyTowards the end of the two days on the stand, GPs were taking handfuls of the leaflet to display in their surgeries.

I encouraged them to send for more.

Marian Nicholson 12 October 2016
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Test a new spray?

New product – Take part in our trial of a herbal spray from Australia. Volunteers needed to test it. Free sample sent to you. At present we are testing it on FACES and MEN’s GENITALS. (Sorry, not ladies’ genitals.) Let me know how many outbreaks a year you have been getting. Email if you are interested.
Marian Nicholson 7 June 2016
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Run a meeting! Worth it!

My own journey started eight years ago and even though I have a wonderful sister, I wasn’t going to talk about this to other family or my friends. Being part of a support group has filled that gap for me.
At first, I was nervous. I didn’t have much to offer except for life experience around [insert condition here] and I often questioned whether this would be enough to support others. I soon found out that it was more than enough. Running a support group is not about being medically or professionally trained in any way, it is about giving people the opportunity to share their stories, to have a cry, and to be heard.
Initially, I started by meeting people one-to-one, just to see if running a group was something I could do, and within a couple of sessions it grew to a larger group. I now have between five to ten lovely women attending monthly sessions in a coffee shop and around 50 amazing individuals on the email mailing list. I have also introduced a hidden Facebook page so people can continue their discussions on-line.
When we meet it feels as if I am with my friends for a bite to eat and a catch up. Sometimes I wonder what the coffee shop staff might think if they overhear us huddled together talking nineteen to the dozen.
To begin with I thought that, as host, I would have to exude an endless pit of positivity and encouragement and mask my own real thoughts and feelings. But from the first discussions, it was clear that in helping others I was actually helping myself. Our system of sharing pent up and sometimes dark thoughts, made each day happier for all of us. We use the sessions to discuss important information, or new research, as well as to release our negativity.
I cannot think of a better way to spend my time; possibly the best decision I made for myself and others was to volunteer. What is better than being real, in a safe place, with people who understand “it”? I think that is as good as it gets in terms of support.
Anon – 5-5-16

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Mindfulness and you – how it can help

from Sphere volume 30 issue 3

‘Mindfulness’ is everywhere right now – and all the signs indicate that it is shortly to become a part of our mainstream lives. [1]  Its meteoric rise coincides with an increased awareness of stress. Rising numbers of prescriptions being issued for antidepressants, [2] but more people are looking for another way.

Perhaps it’s not surprising that we’re greeting an alternative (like mindfulness) with open arms. Some, however, believe that its applications could range far beyond simple calming and relaxing. They believe that mindfulness can be utilised to aid those suffering from pain, [3] from chronic health conditions, and from stigma. Could mindfulness help those with herpes simplex types 1 and/or 2?

What Is Mindfulness?

Put very simply, mindfulness is the practice of focusing upon one’s being in the present moment, of developing self-awareness, [4] of eschewing distracting stresses and concerns, and simply enjoying existing within the present. Mindfulness meditations may include focusing on current sensations and environmental factors, such as the smells and sounds one can hear, one’s breathing, one’s heart rate. One should not block thoughts from popping into one’s mind, but should acknowledge them and let them go without pouncing on them and worrying over them. It may sound complicated on paper – but many people swear by it, stating that a greater awareness of their physical being and presence within the world has improved their mental health and quality of life immeasurably. This is particularly true of those struggling with long-term conditions, and the stigma of those conditions. [5]

Mindfulness and Herpes

Herpes simplex symptoms can be painful and irritating but should be kept in perspective. It may not be the best idea to focus upon this pain and irritation as a part of your mindfulness meditation, but many have found that allowing one’s consciousness to fill with the other sensations of the moment can greatly help to diminish the perception of pain and irritation. [6] While it won’t physically reduce the pain, it will diminish how much you notice and care about it.

A lot of the pain we feel depends upon our mental perception of that pain – our brains can amplify even a tiny cut into an agonising wound if we concentrate on it hard enough. However, mindfulness can help us to reduce our perception of the pain and irritation of herpes simplex outbreaks, which is hugely helpful in improving quality of life and managing frustration!

Mindfulness and Stigma

A major problem for people with herpes simplex is the stigma associated with it. Sores around the mouth can make a person feel ugly – which is bad news in this age of obsession with appearance. For some, genital virus carries with it an association of sexual misdemeanor which can be very damaging to self-image. The best way to eliminate the pain of these stigmas is to change the way in which society sees herpes – but that’s an ongoing project which will take time.

In the meantime, it is important that Sphere readers develop ways to reduce and eliminate the harmful effects of such stigma on their self-perception. Developing compassion for oneself, and eliminating any self-loathing which the conditions may bestow are imperative, and mindfulness can help with this. In the case of self-loathing, mindfulness and the emphasis it places upon living in the moment and seeing things as they really are can prevent these destructive thought-cycles from occurring, and enable people to step out of this bubble. For this reason, it’s often recommended for those looking to build their self-esteem. [7]

[1] Madeline Bunting, “Why we will come to see mindfulness as mandatory”, The Guardian, May 2014

[2] Sarah Knapton, “’Mindfulness’ therapy adopted by stressed Britons”, The Telegraph, May 2014

[3] Emma Tracey, “Managing pain with the power of the mind”, BBC, Jan 2015

[4] BBC, ‘”Who, What, Why: What is mindfulness?”, May 2014

[5] Anne M Fletcher, “How Mindfulness is Working Its Way Into My Life…and Into Addiction Treatment”, Rehabs.com, May 2015

[6] Tina Stallard, “Mindfulness For Pain”

[7] Deborah Ward, “10 ways to overcome low self-esteem”, Psychologies, Jul 2015

Blog post by Gemma Gidlow, 19-4-16

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Great wall of vagina – and you are invited to send in your contributions to a new project?

Mind-blowing! I never knew women’s bits were so different. An education – and I love doctor Peter Greenhouse’s comments. See it at Great Wall of Vagina .

There ia a new on-line Vagina Project which invites you to contribute your own story.  Check out www.theangryvaginaproject.com

It “seeks to collect and celebrate the stories of women who have had difficulties with their vaginas/vulva”. It is the creation of a clinical psychologist working in sexual health. She has asked us to share this and hopes the project will be a huge resource and offer empowerment to women across the world.
Marian Nicholson 29-3-16

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Forums: private chats

Members of the HVA are invited to join a forum, members only.

What is the forum for? Why should you in ?

It is a way for our members to get to know each other in a safe space. You will be able to ask questions and get answers. It will be moderated by Marian and Nigel at the office to start with. Other admins may be added later.

We will aim to answer your questions and correct mistakes so it should become a useful resource. Misleading or impolite comments will be removed.

How do you join? Send an email and give us the EMAIL ADDRESS that Facebook has for you. We will then invite you to join.

We look forward to seeing you there.
Marian and Nigel, 29th February 2016


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Are you an expert ‘dater’?

We run something called a ‘Study Day’ or ‘Workshop Day’ or ‘Seminar on the Subject of Getting Confident in Talking To a New Partner’…  Actually, we need a good title: send me your idea if you think of one, please!

I have just said good bye to the people who came to today’s event. (Next one on 27th February.)  One of the things that we talked about was the difficulty of dating – at all – for anyone! I mean, just finding someone and seeing that person more than once. This is outside my field of expertise, so here are two experts…

1. For women, Cindy Lu has what seems to me to be a great way to date. She describes it in her book ‘The Four Man Plan’ and I think her ideas make sense. I won’t try to tell you about her system, but the ‘rules’ she offers would have helped me hugely back in the days when I was dating.

2. For anyone using on-line dating – and that is almost everyone, isn’t it? This article in the Guardian recently was an eye opener. Until on-line dating, there was no such thing as a problem of too much choice. Now, it is obvious. Why settle for this reasonably appropriate and desirable person, if there might be an even better option a few clicks or swipes away? In fact, it seem a marvel that anyone every settles down for a committed relationship (or what used to be called ‘marriage’).

Good luck!
Marian Nicholson, 21-11-15
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Big ears at an Awards Dinner

You know how you can always hear when your name is mentioned, even in a crowded noisy room? I have developed even greater skills.…

I was at a medical conference attending an Awards Dinner in a swanky Brussels hotel when I heard a woman at the next table saying that she always took lysine when she had an outbreak! The words ‘lysine’ and ‘outbreak’ piqued my interest so I turned round, clocked her hairdo.

We know that the evidence that lysine works is thin to non-existent. (Members can ask for our special leaflet ‘Lysine and arginine: find out the facts’. It tells you all you need to know. Our advice is to try something else.)

The next day I bumped into her so I was able to hand her a Lomaherpan leaflet. Now she can try something effective the next time she thinks she is getting an outbreak.

Lomaherpan and LomaProtect are financially beneficial to two of our customers! One is a professional flute player, and the other plays the trombone. For them, a cold sore stops them from working. If the trombone player gets a cold sore, not only does he miss the gig, he has to pay someone else to take his place! That is why they keep coming back for more.

Marian Nicholson, 22-10-15

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Website disaster

Our website vanished at the beginning of August because the hosting company went bankrupt. This means the whole website was lost and it has had to be rebuilt… This takes a lot of time, I have discovered!
Pages will be added as fast as we can get them up. Meanwhile, feel free to phone the helpline 02845 123 2305 or the office (particularly if you would like to place orders) on 020 7607 9991.

Marian Nicholson, 17-8-2015


Long live the NHS

I think we are lucky with the NHS. You will read a lot of NHS-bashing in the media, but when I hear stories from other EU countries…!

Wearing my shingles/neuropathic pain hat, I have volunteered to be a trustee for Pain UK and I am their representative on the board of Pain Alliance Europe (PAE).

A project we are considering right now in PAE, is to establish how much patients have to pay for their medications and treatments in various European countries. Mostly they all have to pay for these and then apply for a refund – and precisely how much refund they will get varies according to how much they earn, what the condition is, etc.  For instance, there are 13 categories for refund levels in Galicia, Spain.

This has set me thinking. Even where you get a 100% refund (and most plans don’t give you that) there is all the bother of claiming your refund – and then money is needed for the accounts departments dealing with refund claims.  A friend living in the U.S.A. told me that each time one of her family was ill, she spent a full day dealing with the paperwork.

We have a National Insurance paid at source and a flat-rate prescription charge of £7.73. And only 12% of the UK population has to pay this prescription charge. (Sorry if you have to pay for your aciclovir prescriptions!) To get free healthcare and our pensions, we all pay about 12% of our income. In the USA, to get full health coverage (including maternity) I have been quoted $422 a month (£270) which would be 12.4% of a £25,000 salary – then you’d have to buy a pension plan on top. In Canada’s Quebec health and pension seems to cost a minimum of 7.7%. In Denmark, the health insurance contribution alone is 8%.

Marian Nicholson, 31 July, 2015

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Proof that you get over ‘it’

One third of the people who don’t renew their membership tell me that it is because “I am sorted, I have a partner/husband/wife and it is no longer an issue for me – I don’t need you any more.”

How did I find out? It was as a result of a drive to ask people to renew their subscriptions. (As well as the ‘sorted’ third, another third gave variations of ‘cheque in the post’.)

If one third of our members are sorted at the end of every year, it makes sense for you to read our information and/or attend our events, until you are sorted too.

And even when you are sorted, please keep on supporting us (just like any other good cause – but one that you have experience of) so that we can ‘be here’ to help all the newly diagnosed people who need us. We rely on you for survival. We have no government/NHS/Department of Health funding at all! This really surprises the doctors and the other sexual health charities we talk to.

Marian Nicholson, 7 April, 2015


You can talk about herpes anywhere – you’d be surprised at how interested people can be

On Saturday, I was chatting about herpes in the moat of the Tower of London.tower3 Marian
How did that happen? Well, I was a volunteer ‘planting’ poppies for the First World War memorial display, Blood Swept Lands and Seas of Red. Go and see it if you can – it is magnificent and very moving. When it is finished, there will be 888,246 of them encircling the Tower – one ceramic poppy for every person from Britain and
the Commonwealth who died at the Front in the 1914-18 war.

One of the volunteers was taking photos. I asked her if she would email me one and gave her the email address info@herpes.org.uk. Immediately an older lady with whom I’d been chatting, overheard and asked me about it.

I told her that I work at a very special charity with a dual nature giving advice about genital herpes and herpes zoster (shingles).  I put it like this in case the word herpes freaks them out – they can immediately switch to talking about shingles if they find this more comfortable. But this lady and her friend immediately started talking about their genital herpes. They told me they’d had it for eons – down below.

One added that her husband had many (facial) cold sores. We talked lots, and I explained about herpes treatment and ended up selling her a Lomaherpan and a LomaProtect which I just happened to have in my bag – for the Russell Square meeting I was going to later on. (More about these meetings near Russell Square – next one 1st November.)
Marian Nicholson, 23 October 2014

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Stigma

Stigma and sex go hand in hand: anyone who behaves outside the expected rules of sexual activities can be stigmatised. For instance, women who have too many partners are called nymphomaniacs – or worse.

Sexually transmitted infections and the people who catch them can be affected.  Stigma originated when syphilis and gonorrhoea were common and dangerous. Antibiotics have transformed the treatment of these infections.

Genital herpes was not stigmatised until antiviral drugs were marketed in the early 1980s. At that time, the stigma that was lifting from treatable infections became attached to genital herpes instead. This is a great article on the creation of the stigma.
Marian Nicholson, 25-7-2014

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New source of funding

We scatter ‘donate please’ links across our website, but still we need £17,000 per year more
to break even. So, the trustees have accepted a limited form of advertising i.e. MedExpress has a direct link.
We don’t encourage people to take antiviral drugs, but we know that a lot of people find them very useful and prefer not to ask their doctors for prescriptions – for convenience and/or privacy reasons.
We hope you find this link useful.
Marian Nicholson, 14 July 2014

Result of the case review on David Golding

Today, Nigel and I were both at the Royal Courts of Justice to hear what that three judges of the Court of Appeal had to say. David was found to have been correctly sentenced to 14 months back in 2011 – but since he’d been on bail so very long, they decided that this was considered to have been ‘spent’ so he does not have to back to prison. Read our our media release. Also you can see more of the background to the story here, and in the five blogs above it.

On 18th December last year, we had listened for several hours as Professor George Kinghorn explained herpes simplex to the court, and answered questions about what David might have been told about herpes simplex. We were glad when Prof. Kinghorn commented along the lines of: “Quite likely, he was told nothing about asymptomatic shedding.”

On 18th March, the Court spent a whole day to question Cara Scott (the victim), David Golding and his first solicitor in depth. We were glad to note that when the prosecution or the defence barristers had not asked something that the judges felt was important, they either prompted the barrister to ask it – or just asked the question themselves.

There are many points in the judges decision which both David and the HVA would like to query or even contradict. We will be talking to David’s barrister about ‘what happens now’ – perhaps it goes to the Supreme Court? We will let you know.
Marian Nicholson, 8-5-2014

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My other hat: sign the e-petition

Sometimes I take off the herpes simplex hat and focus on another herpes virus: shingles, officially herpes zoster. This is the name for a recurrence of chickenpox – and the nasty thing about shingles is the neuralgia that can remain after the blisters have healed, particularly in the elderly.

Wearing my shingles hat, I work with other charities where pain is a major issue and I’m a trustee of Pain UK, an umbrella charity with more than 25 pain charities as members.

Pain UK gave the first Pain Champion award to Jean Gaffin. As part of her prize, an on-line petition is asking the UK Dept of Health and the organisations responsible for setting standards of care to ensure that health and social care professionals help people living with pain by asking about their pain, measuring it, recording it, treating it and managing it at every opportunity.

Please sign the e-petition and join me in supporting this important cause.
Marian Nicholson, 17-4-2014

The sexual health doctors’ conference in Liverpool

Nigel spoke out:

Dr Anatole Menon-Johansson of Guy’s & St Thomas’ reported on the BASHH (sexual health doctors) national audit on the management of genital herpes in GU clinics. At the end of his talk, I asked: “What are patients told after they have had a sexual health MOT? Is it explained to them that they have not been tested for herpes simplex if they have no symptoms?” This point was not covered in the survey.

I did not get an answer about this but I know that patients are meant to be given a list of everything they have tested for. Some clinics claim that because they have this list on the wall (somewhere about the place!) they don’t need to hand out a piece of paper. We disagree, you need the list on a piece of paper to consult later.

It was great to see Dr Colm O’Mahony, the consultant at the Countess of Chester Hospital’s clinic, stand up and tell everyone to buy Herpes Simplex – The Guide, to give to their patients. He said, “It is brilliant and every newly diagnosed patient should get one.”

You can buy one yourself if you do not have a copy.
Nigel Scott, 10-4-2014

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Marian’s meetings – guidelines and leaflets for you

Two really interesting meetings last Saturday!

I was suggesting improvements to herpes simplex leaflets and guidelines. Not ours, this time, but the ones put out by the sexual health doctors of BASHH (British Association for Sexual Health and HIV). All medical organisations are meant to involve patients in leaflet writing, so a mixed group of health professionals and ‘lay people’ were invited to the Royal Society of Medicine to read, comment, discuss and improve both the PILs (that’s patient information leaflets) and the Guidelines (written to help ordinary doctors diagnose and treat STIs).

1. You can see the new BASHH Guidelines.  Treatment options have been updated and it is easier to read.

2. We were also reading a new guideline on “herpes simplex in pregnancy”. This will be a joint guideline issued by both BASHH doctors and the Royal College of Obstetrics and Gynaecology and will say that women with a recurrence at the time of birth do not have to have a Caesarean section.

3. Because all their PILs have to follow the same format (whether viral or bacterial like chlamydia and gonorrhoea), the one on genital herpes will not be very helpful. You’ll get much better information by reading our frequently asked questions page.

BASHH is always looking for more lay people to get involved. Let me know if you would like to come along to their next Saturday lunchtime session.

Afterwards, I went to host our Russell Square meeting – six really nice women came along – but where were the men? We know that 11,693 men were diagnosed with genital herpes in England in 2012. Some must live in the London region? See more dates on What’s New. Come along – the cocktails are reduced after 5 pm!
Marian Nicholson, 30-1-2014

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Would you like a ‘support app’ – give your opinion

We have been asked to provide people to give their opinion on what they’d want from a ‘genital herpes support app’. [I have lost the email from the researcher – so perhaps she’ll read this and get in touch again.] She wants people who have caught it in the last year (only) so that she can get ideas for this new app.
I am old-fashioned enough to think that the helpline and the frequently asked questions page are what people need! Email me what you think/want.

Marian Nicholson, 23-1-2014


Questionnaire seeking your opinion on a vaccine

I was phoned from the US by one of the companies doing vaccine research in October. They are collecting the opinions of people who have had type 2 for more than 1 year on how they are affected by genital herpes and what value they’d place on a vaccine.
The questionnaire was adapted for our UK healthcare by adding, for instance, “sexual health clinic” to the list of healthcare providers and “£0” to the amount you spend on drugs (you get antiviral pills free at the clinic.)
One suggestion they have for the vaccine is that you would have a jab every three months in order not to get outbreaks. I was surprised that they consider this a viable idea – I told them I wouldn’t be interested in that! Would you? Email me with any views.
They have collected 70 completed questionnaires in two months and say they will send us the highlights from the analysis of the questionnaire. I will put these in a future SPHERE journal.
Marian Nicholson 20-12-13


Fun with others

“Thank you!” It is so nice to hear people say how very glad they are that events are organised so they can meet hatothers. On Saturday, at Brown’s, we had 10 people – some left early, others arrived late – and one of them had flown in from Germany. I couldn’t take part in all the conversations at once, but I think I managed to have a chat with everyone at some time. One person had sweetly decorated me a Halloween Hat with the HVA logo (just visible on the left) and a Toblerone bar (because I tell people that’s what my SPHERE sign is like). I’m holding up an HVA card showing the same logo.

Why don’t you come along on Saturday 23rd November – at The Atrium, at the President Hotel (where the cocktails are cheaper!) – see What’s New page for details.
Marian Nicholson 5-11-13

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Tell the doctors how great we are

Did you know that some medical people are afraid of patient support charities? Some think that that patient groups are just a bunch who moan together or set up to tell other patients to insist on expensive treatments.
This view is changing because so many groups do such a fine job and because the new NHS insists that patients are consulted in the setting up of care pathways, service guidelines, etc.

But still, it helps us greatly if you would mention to doctors, nurses, health adviser and GPs that you have found that HVA helpline/website/leaflets/magazine has helped you. Of course, if we didn’t help – or you can see a way we could do better, then don’t tell them, tell us. Email me with your comments.
Marian Nicholson 13-9-13


I’m a guinea pig for shingles research

I was invited to go along to University College London to see what Professor Arne Akbar, Dr Neil Patel and team are working on. They explained how their research aims to find out why some people get shingles (a recurrence of childhood chickenpox) and some don’t. I figure that it is remotely possible that this research could also give an insight into the reason some of us get frequent herpes simplex outbreaks.

Neil showed me round the lab, explained the monoclonal antibody machines, revealed massive freezers full of samples kept below -20 degrees centigrade, and then took a small sample of blood. (I’m a blood donor, so his tiny needle didn’t faze me.) We will be offering a half-day tour of the labs and talk by Professor Akbar later in the year – email me if you are interested in that.

If you qualify, please volunteer yourself for his research! If you go to his advert you will see full details and you can call or email him to make an appointment. The more human guinea pigs, the better!
Marian Nicholson 19-8-13

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If it’s scary, don’t believe it

I complained to NHS Choices about their page on meningitis and have been told that they will correct it. Result, yeah! [16-8-13: They’ve done so!]

They’d written about the causes of meningitis too sloppily, implying that bacterial and viral meningitis could be caught in the same way. This matters as bacterial meningitis can be very serious (sometimes fatal) whereas viral meningitis is usually just the headache you get when you have flu or a first infection with herpes simplex.
They’ve replied:

“Thank you for your recent comments regarding the causes section of the meningitis Health A-Z topic.
Following your comments I have corrected the wording regarding the transmission of viral meningitis. It will take a while to update on the live site… Many thanks again for bringing this matter to my attention and apologies for any inconvenience caused. Best regards, Editorial team, NHS Choices”

So please let me know of any other scary comments you see on “proper” websites and I will see what I can do. (The websites that are deliberately scary so as to sell you their $99 treatments/ $37 book won’t be interested in correcting misinformation.)
Marian Nicholson 9-8-13


Don’t worry. Get happy!

If you didn’t watch Horizon’s Wednesday, 10th July’s programme (on BBC2 catch-up) – you need to RIGHT NOW! It is brilliant. Michael Mosley changes his brain in ‘The Truth About Personality’. So many of the people I talk to on the helpline have a negative viewpoint, always thinking the worst. This is not necessary and it will shorten your life by 7 and a half years! You can change your brain.

Regarding our situation, we know that very few potential partners will be put off. We KNOW it from doing a survey on our members. But people I speak to just expect the worst – and it isn’t necessary to hold this negative view.
Marian Nicholson 13-7-13

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Anti-stigma petition

We have re-opened the “End Stigma” petition by popular request! So sign it and get any open-minded friends to do so too. Thanks!

We had it open from July 2012-January 2013 and we got 238 signatures and lots of sensible comments. I’d hoped we’d have thousands/millions of signatures… But I guess we will have to find something cleverer if we want it to ‘go viral’.

We keep adding interesting comments, pictures and captions to our Facebook page. Have you looked?
Nigel Scott 2-7-13


Ear wax? You must bee joking!

‘Outlineproductions’ is doing something on home remedies and someone has suggested to them “the use of ear wax as a natural remedy for cold sores.” The researcher added “I was curious to know whether you had come across this cure and whether you knew of anyone who uses it regularly.”

I have NEVER heard of this. Have you? If so, send me an email about it? Thanks,
Marian Nicholson 29-4-13


Do universities get pass-marks for their sexual health services?

From 1st April, sexual health services are going to be commissioned by local authorities (LAs). Fingers crossed that the LAs take their responsibilities seriously. Sexual health and contraceptive services are already being provided by non-NHS oraganisations such as Terence Higgins Trust and Brook. For students, there is (or should be) a GUM/contraception service on campus. But is it any good? DrED has done the “mystery shopping” and published their results. Check the Guardian’s article for their view of this survey. And for the ‘exam results’ themselves, see here.

Marian Nicholson 21-2-13

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Unexpected gift from Phil Hammond

Dr Phil Hammond, doctor and stand-up comedian is our newest patron. He is delightfully active on our behalf – I watched his show when it came to a theatre near me – he was wearing a “shiny red with white spots” rubber wristband and he told us this was his “love herpes” band. I laughed a lot (but don’t take any easily shocked friends.)
Last week he donated the full £750 that he was given for a speech, straight into our coffers! What a hero! Check his website for when his show is playing near you.
Marian Nicholson 6-3-13

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Is confidentiality important to you?

There is a law that ensures that information about you – when you visit a sexual health clinic – is kept confidential. It only allows information to be shared if this would help treat or prevent the spread of important infections (and genital herpes is not ‘important’ in this context).

The government is proposing to scrap this law and replace it with woolly rules on confidentiality which already apply to the rest of the NHS (all staff working in the NHS are not allowed to share information about patients except as part of their job).

What would change?
This would mean that the information you provide at a sexual health clinic may become part of your overall health care record and could be seen by other health professionals. Potentially this is a massive change from the current arrangement where most clinics have separate notes from the rest of the hospital and the rest of the NHS. In future you could be asked to provide your real name, date of birth and contact details when you attend a clinic and this could be linked to your individual NHS number.

We think this might discourage many people from being tested and treated and could result in serious infections being spread more widely and at greater ultimate cost to the NHS. More importantly, it could mean that many people’s health could be seriously affected by infections that they are afraid to get diagnosed and treated.

Our sexual health services have been built on the principle of anonymity for one hundred years. This has ensured that the maximum number of people get tested and treated and has helped to reduce the spread of infection.

I will be joining the president of BASHH (sexual health doctors’ association) to meet with the Department of Health on Tuesday 19th February. Will you help us to convince the government that confidentiality needs to stay? Please complete this (short) survey and send it to anyone else you think will help.

Thank you for your help. It is such an important principle we have to do everything we can to keep it.
Marian Nicholson 25-1-13

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Clinics are asking for our “talk” and loving it

Most of you reading this got diagnosed at a sexual health clinic, didn’t you? Were they reassuring and informative? If so, it may be because they’ve heard my one-hour PowerPoint presentation called “How to Help your Patients with Herpes Simplex”. Stuffed full of facts and background, it is based on the fact that “this is a cold sore – why treat it differently?”

One of the (many) points I make is that when they call it a cold sore:
– There is less sense of shock when the patient is told.
– There is therefore less chance of the psychological problems that we hear about on the helpline.
– The patient will find it easier to talk about it with partner. (If you choose to talk about it… After all, people with facial infection don’t feel any need to talk about it.)
– When people do talk about it with their partners, there is evidence that they are less likely to pass it on.
And that, of course, is what the medical profession wants!

At the talk I gave this week, the senior nurse laughed so loudly I had to pause till she calmed down – this might have been when, in a standing position, I demonstrated how a child with a cold sore could stick his foot in his mouth and therefore get a cold sore on the toe if it were possible to spread virus around your body – BUT IT IS NOT and therefore we do not see foot infections! And the senior doctor said at the end “wonderful!”.
I’m off to High Wycombe and the Isle of Wight next.

Does the clinic you went to need to be advised on “How to Help Patients?” If so, email me its name. And if you need answers, either email email or phone on 0845 123 2305 to talk to me or another helpliner.
Marian Nicholson 10-11-12

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Correcting THE SUN’s article:

THE SUN reported: ‘I’ve had sex with eight men even though I know I’ve got herpes’
Student, 19, puts lovers in peril
. We think this young lady has been doing all the right things! Read the article with our comments in red correcting their assumptions and mistakes.
Marian Nicholson 1-5-12


The HVA is on Facebook

We now have a Facebook page. We will be posting news and information that will hopefully get to a different audience from our main site. We have added a cover picture taken in Edinburgh of the Scottish National Gallery of Modern Art. You can see why we like it.

We need as many Facebook members as possible to ‘like’ the page, as this will give us a higher profile. We know that some will not wish to do this, but we have made a start and thanks to those who are there already. You can visit the page without ‘liking’ it if you wish, so please check it out.
Nigel Scott 13-4-2012

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What we have been doing re the Northampton case

In the last few weeks we have been to meetings with other charities as well as a meeting with CPS officials and the Department of Health. Everyone is well aware of the controversy surrounding the case and reading between the lines, I’d say it appears that the CPS probably wishes that this case had never happened.

There has also been a meeting organised by the Department of Health and including the CPS, specialist sexual health doctors and other organisations. This indicates to me that there is a genuine desire to make sure that procedures and guidelines are in force and are adhered to so that future cases do not ‘slip through the net’ as this one did. It happened without the approval of the CPS Head Office and their expert on STIs. We also argued that in future, medical experts in cases of this type, should be drawn from a panel of specialist sexual health doctors who have been vetted and approved by BASSH for this task. Medical reports presented to the court should not include hearsay or unsubstantiated allegations.

We have the feeling that we are pushing at an open door here, so we fervently hope that this will have been the first and last UK genital herpes transmission conviction. If the conviction is ultimately quashed, it will be as if it had never happened and David will have his criminal conviction removed from the record.
Amen to that.
Nigel Scott (no relation!) 4-11-2011

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STOP PRESS – He’s out – bail granted 28th September

I got a phone call from David’s dad as they were driving to the prison to collect him: the Crown Prosecution Service (CPS) is looking again at the evidence and – highly unusually – he has been granted bail in the meantime. This could be because they expect that the sentence will be overturned.
The CPS has asked an expert virologist to examine the medical evidence. This is a doctor who knows about herpes simplex and can point out the weakness in what the Judge was told during the trial in August.
If/When the sentence is quashed, David will no longer have a criminal record.
You can read more in the Northampton Chronicle and Echo, 29-9-11.

Marian Nicholson 29-9-2011


On the 16th September

I was at Keele University, giving a workshop on ‘Helping your patients with herpes simplex’ to doctors working in sexual health clinics and in primary care (GPs’ surgeries) – it went well. I challenged them with “How do you help the person who wants to know how he can tell his new partner?” (I know they need this, because it is something that comes up on our helpline regularly.) I made sure that they understood that Caesarean-sections are no longer expected EVEN if a mum has an outbreak at the time of giving birth. We only had one hour, and since I can spend an hour on the phone to one caller (sometimes) you can see that we couldn’t cover everything.
Naturally, they asked me about the case – see below if you don’t know what I am referring to. I was able to update them with news that I cannot write about here – yet!!! Check back because as soon as I get the ‘all clear’ there’s a bombshell (good one) coming!
We are writing the content of our next magazine, due out early October, which will cover the case and explain what the Crown Prosecution Service (CPS) is meant to do about transmitting STIs. It is gob-smacking how much the Northampton prosecutor did not follow the CPS’s own guidelines!

Marian Nicholson 21-9-2011

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Nigel on Five Live re the Northampton case

On August 31st, I was asked to appear on the Victoria Derbyshire programme on Radio 5 Live to talk about the David Golding case. His ex-girlfriend Cara Scott was also on the programme with her new partner, the father of her new baby.
Fortunately we were not on at the same time – I spoke over the phone about half an hour after she was on. I was able to make most of the points I wanted to get across and did this by using the old politician’s trick of not necessarily answering the question but saying what I wanted to say anyway. You can listen to it on iplayer until September 6th.
Nigel Scott (no relation!) 1-9-2011


What does the Northampton case mean for the future?

You will probably want to know what this case will mean. We have not changed our advice and you can read the details as to why: read the Briefing.
We are grateful for the very nice comments we have received about our website – particular from our new readers. And we are sorry to have had some emails from people with really bad symptoms – especially if they have not been offered appropriate treatment – who therefore find it impossible to accept that most people carry this virus without being aware of it. You can comment in an email if you wish.
Marian Nicholson 26-8-2011

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What is happening this week (read the 3 posts below too)

The Crown Prosecution Service (CPS) has guidelines on when to prosecute for transmitting an STI. I was involved at the time of the last public consultation. (8 years ago?) On Monday, Nigel and I met representatives of Terence Higgins Trust, the National Aids Trust and the Hepatitis C Trust who are as concerned about the case as we are. I learnt that a prosecution lawyer is meant to consult the CPS ‘head office’ before bringing any case for transmitting STIs. In this case, that guideline was not followed. The CPS only heard about this case when we phoned them.

The charities are also really concerned that if people start to be routinely prosecuted for passing on STIs, then people will cease getting diagnosed; because people will think that if you don’t know you have it you cannot be blamed for passing it on. This is of huge concern since there are many conditions that must be treated to avoid serious consequence: chlamydia is a major cause of infertility, gonorrhoea and HIV can kill, and certain warts are the cause of cervical cancer. It is essential that people continue to get screened for these conditions that often don’t cause symptoms (until it is too late!)

Our targets now are:
– to get the CPS to insist that prosecutors contact them before starting to prosecute a case;
– to see if the Department of Health will join the charities in lobbing for the CPS to follow their own guidelines, because they need people to continue to be screened for STIs;
– to write a briefing paper for people with herpes simplex to link to this website;
– to write a briefing paper for police and lawyers on herpes simplex, its prevalence and how hard it is to prove from whom it came.

However, writing these papers, or any articles/letters to the media, are being hampered by the astronomical increase in phone calls that the helpline is getting. From the moment the Daily Mail got hold of the story last week, we have been getting three times higher number of calls. Fortunately, our helpline volunteers are being generous with their time!  There was a great letter in the Metro – the writer who knew what she is talking about and was prepared to go public.

Keep checking back here for links to more stories/letters in the newspapers: two have been recently sent off for publication.
Marian Nicholson 24-8-2011

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More on the Northampton case (read the two posts below too)

Today’s ‘Comment is free’ article in the Guardian covers the wider issue of criminalising the passing on of diseases in a clear and comprehensive way. Matthew Weait has done a great job. Read it!

On Monday, we are meeting with doctors, health professionals and representatives from other health charities who have members could be criminalised in this way to discuss how we take this forward. Keep reading to see what we are planning.
Marian Nicholson 19-8-11

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Update on Northampton case

Update:
1. The case was not really “tried” as the man was “persuaded” to plead guilty. The doctor who gave a so-called report to the Court was not informed about herpes simplex and just spouted the usual stigma-stuff.

2. The doctors in the British Association of Sexual Health and HIV are so shocked that this had happened that they are talking about getting lawyers from the Medical Defence Unit to help get the law sorted out on what the guidelines should be on passing on STIs.

3. THT and other HIV charities are getting involved too – and have put their expert lawyer in touch with the man’s family so that he can appeal the sentence if he wishes.

4. We have talked to the man’s family and there is a lot of back-story to the relationship which the woman did not disclose to the journalist who wrote her side of the story in a magazine. If the full story had come out in Court, the case would no doubt have been somewhat different!

5. You can all take comfort from the fact that the guidelines for prosecution state:
“The courts have recognised that person-to-person transmission of a sexual infection that will have serious, perhaps life-threatening, consequences for the infected person’s health can amount to grievous bodily harm under the Offences against the Person Act” and if any lawyer bothers to defend his client, all the expert witnesses will repeat that HERPES SIMPLEX IS NOT GRIEVOUS… etc.

6. Our patron Dr Phil Hammond has a brilliant article about this in Private Eye – go and buy it now “Olympic Rehearsal” on the cover – his article is on page 10. Or read it on this PDF.
Marian Nicholson 17-8-11

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Court sentences Northampton man

Highways Agency Traffic officer David Golding has been sentenced to 14 months imprisonment after pleading guilty to infecting an ex-partner with genital herpes. This charge has occurred despite the fact that Crown Prosecution Service Guidelines on “Intentional or Reckless Sexual Transmission of Infection”, include the following statement:

“The courts have recognised that person-to-person transmission of a sexual infection that will have serious, perhaps life-threatening, consequences for the infected person’s health can amount to grievous bodily harm under the Offences against the Person Act”

“This is outrageous, says Dr Colm O’Mahony, the consultant in sexual health at Chester’s hospital. “Will children also now be prosecuted for “giving” their friends chickenpox? For passing on head lice? For passing on a cold sore? Most people who have genital herpes don’t know it because even if they do get recurrences, it is such a trivial genital infection that they don’t notice it. It has exactly the same medical implications and consequences as an ordinary facial cold sore so in no way can it be construed as serious and it is an extraordinarily ill-informed comment to compare it to HIV. This case sets back the normalisation of this trivial infection by years. I had thought such a farcical scenario could only happen in America – never in Northampton!”
See our full media release with comments from two other expert doctors.
Marian Nicholson 10-8-11

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Anti-PR can be good PR

Another story has come from the US about someone being sued because he passed on genital herpes. Firstly, NOTE THAT, this has never happened in the UK. An expert told us he’d like to be asked for his opinion at such a trial as he’d explain why it was so laughable…
But we wanted to help ensure the story didn’t go any further than the three tabloid papers who’d picked it up. We sent out a media release to all the journalists whose emails we have (about 50) explaining why they should not take it up: there is virtually NO WAY to prove that the ‘victim’ didn’t have it before the sexual encounter. Read the full media release here.
Marian Nicholson 27-5-11

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Our advert should have won!

A competition to win advertising space worth £10,000 in the News of World: I couldn’t resist! This is what we submitted to the judges… No, we didn’t win. But wouldn’t it have been brilliant to see a whole newspaper page like this?

You know someone with genital herpes.

But they probably haven’t told you…
Well, would you tell them?

When you find out that the friend you told that ‘herpes joke’ to has genital herpes will you be embarrassed?

How will you feel when you catch it? Herpes is common. 7 out of 10 people have it. Most of them call it a cold sore. Most people are not diagnosed because they haven’t noticed anything. Surprising?

Get the real facts from the HVA online or on phone.
Herpes – let’s get real it’s no big deal
Herpes Viruses Association – www.herpes.org.uk – 0845 123 2305
Helping people with herpes to help themselves

Marian Nicholson 1-4-11

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Climb a mountain – hike to Machu Pichu – bike across the desert to the Red City of Petra!

Charity challenges are a brilliant way to raise money – walk the Great Wall of China – kayak the fjords of … You get the picture.
You can do it for us – or rather our sub-charity the Shingles Support Society.
We have every possible level of challenge available – and they are all provided by a very reputable ‘charity challenge’ company so there will be no unexpected surprises. Take a look at what’s on offer. The wilder your dream challenge, the more you will raise for us. Send me an email if you are interested.
Marian Nicholson 11-2-11

 

Stand up to the comedians!

Ben Elton is touring in Australia and apparently he is making ‘herpes’ jokes. Readers of SPHERE will know that in November last year there was a major ‘destigmatise herpes’ campaign in Australia with $15,000 in prizes for the best 30 second video. See the videos on Live&Learn website.
I added my comment to a webpage where people were leaving criticism of Ben Elton’s show – you can use this whenever you see any crass use of ‘herpes’ as a joke – or email me with the details, so I can go and leave this message:
“Spastics jokes have stopped – the cerebral palsy lobby have seen to that – so why do comedians think it is OK to make herpes jokes? Perhaps it is because people with genital herpes don’t stand up for themselves. We had a great ‘destigmatise herpes’ campaign [in Australia] last year – seems that Ben Elton missed it!”

Marian Nicholson 10-2-11

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Should we only date other people with genital herpes?
Emphatically ‘no’! But parties can be fun!

I went to the H-ype event last Saturday. It was a ‘wig party’ and there were some superb wigs, and even costumes, on the hundred (or more) people I saw. My hair was sprayed blue and I also wore outrageous ‘eyelash wigs’ i.e. falsies a mile long in rainbow colours.

But I wondered again: should we encourage this sort of event?

You know that the internet is littered with dating websites for specialist markets. There’s the “chubby lovers” site for men who like big women… There’s the “dog lovers” site for the love-me-love-my-dog gang… for cyclists… for people in wheel chairs… There are sites for every condition you can think of and of course for people with STIs too.

Should there be specialist dating for people whose cold sores are ‘lower down’? I was debating this with several people on Saturday at the pre-H-ype pub meeting. Some people say that when both partners know they have the same type of virus, then it can be ignored (and having the other type will give some protection too). Some avoid the possibility of relationships altogether for fear of telling anyone and/or a rejection. Others like the fact that they feel no obligation to talk about ‘h’ with people they meet at these events. Others say that it’s negative thinking to think that you can only date people who also know they have herpes simplex. I agree, it is not necessary to limit yourself to ‘people with h’. Also, I worry that some people will accept ‘second best’ just because their partner ‘accepts me in spite of my herpes simplex’. This is negative thinking too!

I do understand! My main reason for joining the HVA back in 1982 was just so that I could find someone like me to date! I thought that this was a very rare condition and that by limiting myself in this way I was doing the right thing for the world.

But what happened, once I started to talking to the other members at the meetings, I soon learnt that this was a common condition that was usually so mild that people didn’t get diagnosed. Everyone I talked to (who’d been a member for a while) had had what I was calling ‘a normal sex life’ i.e. unprotected sex with someone who didn’t know whether they already had it or not. Took me quite a lot of conversations to really absorb what they were telling me about this.

My position now is that we are only different in that we know we have it. 7 out of 10 people are carriers who don’t know… Mostly it gets passed on by people who don’t know… So we can date anyone just like everyone else.

So, should their be special events for people with ‘h’?

How many potential partners do we meet at work and in our social circles? For most of us: not many! So these social events give you a wider choice of people – people for whom herpes simplex is not relevant. You could just consider it an extension of your current social activities. Get involved! The more people who come to our events, the higher the potential for meeting your dream partner. (Or just get involved for the fun of it.) Over the years we have heard of dozens of happy relationships and marriages occurring as a result of meetings through the HVA. If you have not attended any social events – maybe you should consider doing so. It may well be a very positive and productive move – after all you have nothing to lose!

If you need help starting events up in your neighbourhood, get in touch with the HVA.
Marian Nicholson 1-12-10

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Internship
Under ‘Volunteering’ on our ‘What’s New’ page you will see that we have suggested a person could help fundraise for us, as a volunteer. You could get paid for this – or any other task that you would like to do for us. If you can get an application in to Vodaphone ‘World of Difference’ by the 23rd November [now it will have to be for next year?] – and we have suggestions to help you with this – you could earn £2500 (I think it is) for two months work. Check the Vodaphone website.
Marian Nicholson 10-11-10

Santa Claus Fun Run and other ideas

An inspiring day! I attended a training course for fundraisers and learnt lots of dos and don’ts… These suggestions will definitely make my funding requests more targetted. We want to raise an extra £1,500 per month to ensure our services to help people with genital herpes will continue – not a massive sum, I think you will agree. If you want to help keep us going, please donate, or bung a cheque (or even some stamps – we use a lot!) in the post.
A well as handy tips for writing winning funding applications, there were some madcap ideas! For instance, on Sunday the 5th of December 1,000 Santa-suited runners will descend on Greenwich Park to support a charity (not us!). Should we organise such a thing? We will be asking you to join the May/June British Skin Foundation run – in 6 sites round the country… Check back on the What’s New page in the spring.

More prosaically, I am writing letters to some wealthy people to see if they will help. Elton John, of course, and others who are famous for philanthropy. If anyone has contact details for anyone “really rich” I’d be glad to hear it. For example the Contact the Stars website does not have details for Stephen Fry, he’s so kind I’m sure he’d help if we asked!
I wonder if you have ideas about how our fundraising could be done? Email me if you do!

Marian 5-11-10

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If you are looking for treatment and see the message below, go in the opposite direction as fast as possible
“A revolutionary breakthrough solution that is clinically-proven and doctor-endorsed is now available. The main question is whether a virus can be removed from the body. According to the doctor who invented the solution, the answer is a resounding ‘yes’. This is great news for those suffering with viruses in the body such as oral herpes, genital herpes, as well as HPV… The company has ramped up production and is ready to provide this solution and add to the thousands of satisfied customers who have removed unwanted viruses and toxins from the body.”
Continuing on from my previous post, this is a scam with no basis in science whatsoever.
There are viruses that hide in the body. They will always remain there. Chickenpox, glandular fever, herpes simplex, as well as fungal infections like thrush. Most normal people have all these and more. ‘Treatment’ inventors use this message to scare patients but that does not make these facts important. These infections can’t be removed from the body but most of them do very little and seldom affect general health.
Viruses are not the same as toxins which are waste materials that our bodies don’t need. They are eliminated by our bodies’ normal processes all the time. The idea that we need special treatment to remove toxins (as if our body isn’t doing that anyway) is yet another fallacy.
Quack remedy salesmen (and they are usually men) often claim to eliminate the virus completely. This is impossible to prove until you are dead. They usually claim that you will never have another outbreak. Outbreaks usually slow down or stop anyway so how would you know if their treatment works? Real treatments work and they are scientifically tested. You can help your immune system by eating healthily, reducing stress and getting enough sleep. Call our helpline of you need more advice. The future is in your hands, not those of some quack “doctor”.
Nigel Scott 22-10-10

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A fool and his (or her) money are soon parted

A good news story this week tells of the work done by Rhys Morgan, a 15 year old from Cardiff with Crohn’s disease, who is warning against a dangerous supposed “treatment”. He was looking for something that might help him with his own condition and stumbled across MMS (in fact a bleach) and quickly realised that it is both useless and potentially dangerous.

An explanation of why MMS is a scam is here. The so-called ‘miracle drug’ has a website where its ‘inventor’ Jim Humble claims it is the answer for everything from AIDS to TB and including herpes. Humble also claimed to have used it to cure 2,000 malaria victims. However, student Rhys found that the FDA’s website warned that MMS, “when used as directed, produces an industrial bleach that can cause serious harm to health.” The British Food Standards Agency, meanwhile, warned that the drug could “cause severe nausea, vomiting and diarrhoea.”

The teenager then posted a series of tweets on Twitter, prominent British science journalists picked up the story and the media followed. Rhys was even invited to publicise his warning on Radio 4’s Today programme.

The internet is full of scam treatments and we are regularly asked about them by members and callers. They are usually expensive, may claim that they have discovered something that the drug industry wants kept secret, make extravagant claims, use words like ‘cure’, often don’t tell you what the active ingredient is, use many testimonials and usually claim to treat many totally different conditions. Stay clear of them and call our helpline on 0845 123 2305 if you are not sure.

Good treatments should be available on prescription for those who need them. If you want to use complementary treatments, stick to those using well known herbs like melissa (lemon balm) but above all, get your head around it. Stress is the biggest cause of outbreaks. If you worry less, your immune system will improve and do the job for you.

Nigel Scott – 20th October 2010

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Giving a talk to Sexual Health Department clinic staff
I love giving my PowerPoint presentation to staff at GUM clinics, knowing that this will help staff to help patients from the moment of diagnosis – or even before, since one of the things I say is “Patients with herpes simplex need to be seen while they have symptoms. How does your clinic facilitate that?”
They gasp when I tell them that one GP suggested to a lady with a recurrence of genital herpes during pregnancy, that “Perhaps you should get a termination.” This is SO INCORRECT. Luckily in that case, the lady spoke to her midwife about it and midwife told her to call our helpline and so catastrophe was averted.
Because clinics only see the cases that are bad enough for the patient to notice, clinic staff can be amazed when I tell then that only one in five who have herpes simplex knows. And that a person can have a first outbreak many years after catching it. So it is NOT proof of infidelity.
Feedback from you on a good experience medical staff would be great: see our survey. Any bad experiences can be emailed to me at info@hva.org.uk and I will phone that clinic and offer to give them ‘the talk’.
Marian Nicholson – 13th October 2010

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Responding to the government’s White Paper
We have just finished a two page ‘response’ to the government’s White Paper on the NHS reforms called “Liberating the NHS: commissioning for patients”. Nigel read through all 66 pages of the White Paper and together we put together our comments about it. Mainly, we are bothered that there is NO MENTION of sexual health – much less herpes. This means that GPs may decide that to save themselves money when then are holding the purse strings, they will do all sexual health in the local surgeries. Not only will this mean they are less experienced than current, clinic-based doctors, but people may fear that local surgeries are not as confidential as the GUM clinics (sexual health departments based in hospitals).

Nigel Scott and Marian Nicholson – 6th October 2010

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