Friday, 11 April 2014

A trio of fantabulous European Lyme conferences!

Well, it's all going on! April, May and June are busy busy busy- three fanastic European Lyme meetings are happening - one in good old blighty!

Very brilliantly, a private sponsor has arranged for a panel of seven US tick borne disease doctors and researchers to come on over to London to speak to our doctors for a day symposium on June 7th.

In the words of the sponsor/organiser (from the blog of Joanne Drayson, UK Lyme patient)

The Speakers will be seven USA TBD Specialists, all of whom have over 20 years experience in dealing with these insidious infections. The purpose of this meeting is to discuss, with interested UK Doctors, Vets and their Researchers, testing, diagnosis, treatment, and the consequences to patients and healthcare providers of missing or not recognising the symptoms early.

A situation that is fairly unique and very important, is that in most specialties, the treating doctor will have had no personal health experience of the illness he/she  is treating, whereas in the case of TBD infections  the visiting  American doctors have either had a personal brush with Lyme Disease etc or, have family members who have been afflicted. 

There is a lot of interest in this symposium from Senior Doctors etc, possibly due to the fact that many patients whose symptoms have been missed or misdiagnosed are encroaching on clinics for Neurology, Cardiology, Ophthalmology, Endocrinology, Rheumatology and Chronic Pain.

The warnings have been around for many years regarding long term damage to human and animal health with regards to Tick-Borne Diseases. Can our health authorities really afford to continue with the misconception that Ticks and the diseases they harbour are a 'rare and regional' problem, I think not. 

Education is the key to the most difficult of situations, and it certainly is to this one.

It will not be open for patients to attend, as the aim is to get doctors talking to each other.The exciting news is, Dr Matthew Dryden and Dr Tim Brooks are going to be attending the symposium and the NORVECT conference (see below). In case you weren't aware of who these people are, Dr Dryden is in charge of the newly opened (and sadly soon to be closed) national Lyme referral 'clinic' at Royal Hampshire County Hospital in Winchester. Dr Tim Brooks is head of the Rare and Imported Pathogens Laboratory (RIPL), Porton Down, which does the NHS Lyme disease testing for England and Wales.  

Thier attendance at the London Symposium was facilitated by the wonderful Lady Mar.

WOW!! Thank-you so so much to the person who sponsoring this and absolutely great that Drs Dryden and Brooks are attending. If you have any names of genuinely Lyme-interested NHS doctors who would like to attend, please do email them to Joanne Drayson for her to pass onto the organiser. Joanne's email is Please include a bit of info about that doctor. We don't want valuable spaces taken up by die-hard IDSA ers, so they sould be open minded and interested in learning. Consultants would be great!

I'm feeling happy!
There is also the ILADS (International Lyme and Associated Diseases Society) conference in Augsberg, Germany on April 25th and 26th. Click here for the programme. Dr Armin Schwarzbach, of Infectolab/BCA, is talking on laboratory testing and Dr Daniel J. Cameron, is speaking on building an evidence-based laboratory practice, which should be interesting.

Then there is a star-studded line-up for the NORVECT conference on 26th-27th May, in Oslo, Norway. "Who are NORVECT?" I hear you ask- this is what they say:

About NorVect – The Nordic Network for Vector-borne Diseases

NorVect is a Nordic interest group, dedicated to building and sharing vital knowledge about vector-borne diseases – particularly in the fields of diagnostics and treatment – across our countries.
In cooperation with authorities and other interest groups, we arrange knowledge-leading seminars, conferences, and events covering leading international research and insights on vector-borne diseases.
In doing so, we strive to create a platform for continuous improvement, and for an open and constructive dialogue between patients, their families, health practitioners, authorities, and politicians alike.
NorVect is founded and run solely by patients with the desire to make a difference.
Focus on research, focus on dialogue, and focus on the patients are the cornerstones of our organization.

Think that sounds good? You wait till you see the speakers they have arranged, they are:

Joseph J. Burrascano Jr., MD
Richard I. Horowitz, MD
Edward B. Breitschwerdt, DVM
Alan MacDonald, MD
Eva Sapi Ph.D.
Christian Perronne, Ph.D, MD
Jyotsna Shah, Ph.D, CCLD, MBA
Judith Miklossy, Ph.D, MD, DSc
Carl-Morten Motzfeld Laane, Ph.D
Randi Eikeland, Ph.D, MD
Bela Bozsik, MD

Fantastic work, guys!! This is the programme. What an amazingly exciting event this is going to be. Before you start rushing to book your flights and get your skis out of the loft, please take note that this conference is primarily aimed at Medical professionals. They say :

Due to limited space, we will not be able to open up for patient registration before one month prior to the conference. They also say: The Norwegian Medical Association (NMA) is currently reviewing our application for doctors’ specialization credits. Information will follow within the next few weeks.

I think that's the equivalent of continuing professional development (CPD) credits, so doctors should be able to attend and claim back expenses and add it to their CV as training (if the NMA approve it).

I am very encouraged that Dr's Brooks and Dryden are willing to attend and hear what these highly experienced Lyme doctors and researchers have to say. I hope they listen and learn, for there is soooooo much to learn. I think, (I hope) it will open their minds as to the complexity of it all. I also hope the speakers provide citations or other scientific evidence for their claims. This is difficult to do in a talk, I know, but it will really help the IDSA supporters see that what we as patients have been saying is not just plucked out of thin air. Fingers crossed that the coffee time chat will be fruitful and not antagonistic.

Why not write to your doctors to tell them about it? I have! I've not had a reply and don't expect them to actually go, but if they don't know about it they don't have the opportunity of going, and I hear Oslo is a lovely place for a weekend city break ;-)