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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

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Are you interested in taking part in research?

  1. Herbal treatment.

    Volunteer to test new herbal treatment to stop your outbreaks.  It contains about eight different herbal ingredients including witch hazel, oak gall and fenugreek… Sample sent to you for £3 (for p&p – cheaper than buying it!).  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 is asking for you to volunteer to come and give him a drop of blood. He is at UCL hospital, central London. Email if you are interested.

    Marian gave Dr Patel some of her blood  … and has blogged about it (see page).

  3. If you are in Gtr Manchester area:

    A PHD student at the University of Manchester is investigating the neural mechanisms underlying chronic widespread pain using neuro-imaging techniques.

    She needs to find people to take part in this trial in Manchester.  The study involves 2 visits to Salford Royal hospital, for a 30 minute MRI scan and an EEG study.  She is reimbursing for time and minimal travel costs. She is looking for anyone who has experienced pain in the last month lasting more than 24 hours, including Fibromyalgia, as well as healthy pain free participants.

    You can see contact details on her advert:

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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”

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Dates for the diary

“Dates for the diary” now has its own tab – go to

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.

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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

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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
Continue reading Volunteering

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‘Talking to a New Partner’ – Come to an Event That Will Give You Confidence (and Information)

We run these days to help you develop confidence, information, skills – and to meet others in the same boat.

Nine people attended recently. They marked their score cards with the top rating: a ‘very helpful’ day and several commented that it was even more enjoyable than they had expected. “Meeting the others on the course is a bonus,” said one lady.  “In fact I have made two new friends and we support each other and meet up.”
Continue reading ‘Talking to a New Partner’ – Come to an Event That Will Give You Confidence (and Information)

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Buying Antiviral Tablets Online

There are several websites where you can buy aciclovir or Valtrex.  Check that they are UK-based and have the approval of the Health Commission. This will ensure that you are buying genuine antiviral tablets. These websites have a series of questions that you need to answer satisfactorily before they can issue the ‘e-prescription’ and sell you the treatment.
Continue reading Buying Antiviral Tablets Online