Thursday, 26 March 2015

DR FALLON PRESENTING AT LYME DISEASE OPEN DAY HELD BY PHE, LONDON




Dr Brian Fallon Keynote speaker at Lyme Disease Open Day held by Public Health England on 25th March 2015

Quite a historic occasion for  Public Health England to invite such a well respected doctor and researcher to present on - A review of recent evidence on long term consequences of Lyme disease.

Dr Fallon is director of Lyme and Tick-Borne Diseases Research Centre, Columbia University USA.
http://www.columbia-lyme.org/

I understand that the slides will be made available either on PHE website or Lyme disease Action Website http://www.lymediseaseaction.org.uk/

however for anyone interested some of the slides were also presented at Poughkeepsie in 2014
https://www.youtube.com/watch?v=DEwVEN2kT_A

Dr Fallon talked about the emerging science, mentioning that there were several promising tests in the pipeline and encouraged patients and charity groups to continue with advocacy and pressure on authorities to invest in research and awareness.

The meeting was Chaired by Dr Jenny Harries, Regional Director, South of England PHE who did an excellent job of keeping the presentations running to time and involving the audience in the questions and answers at the end. Dr Harries said she was aware of the short notice of the meeting but wanted to hold the meeting and there were (timing) problems with the pending election

The Welcome and Introduction was given by the Countess of Mar who once again showed her depth of understanding of the problems over testing, complexities of the disease and the suffering of patients who go on to seek private treatment - she said 'Patients seek alternative treatments - some may provide results. Very few fellow citizens can afford private treatment, instead of sniping at private providers, we need to find out what they are offering and learn.' She said she 'understands the awfulness patients feel when they are unable to get treatment but we need to work together'

Dr Tim Brooks Clinical services director RIPL gave an overview of PHE Activities.
Plans to raise awareness of Lyme at the beginning of the Lyme season.
Despite misconceptions we have open minds about infectious diseases.
Without evidence we can not make policy or do studies.

Dr Roger Evans Consultant Clinical Scientist, Raigmore Hospital, Inverness - The Scottish view on Lyme Disease
'We are frustrated because we recognise there is a lot of work needs to be done'
He is currently working with GP's in Scotland to gain a better understanding of the true numbers involved not just the serologically positive cases, so that economic costs can be assessed with the hope that this will in turn attract better funding for research. Dr Evans recently conducted a study of Blood Donors in Scotland  2010-2011   4.1% were positive for Borrelia Burgdorferi - Munro et al (2015) Transfusion Medicine (in press).  http://onlinelibrary.wiley.com/doi/10.1111/tme.12197/abstract

Dr Jolyon Medlock Head of Medical Entomology & Zoonoses Ecology, PHE and colleague talked about tick collection scheme and mapping of areas found in UK. Feeding back information to the public as discussed in an ongoing scheme with Wiltshire Council but hope to extend to other areas.

Dr Randi Eikeland , Head of the National Advisory Unit for Tick - borne Diseases at Sorlandet Hospital, Norway, discussed Neuroborreliosis - Challenges and experiences from Norway. Her work seemed to revolved only around acute seropositive cases and relied heavily on spinal taps with a significant number of patients having symptoms months later but unable to find evidence of a persisting infection.

Dr Sue Best Director of the National Serology Reference Laboratory Australia - A program for a comprehensive review of potential diagnostic tests for Lyme Disease.
Dr Best although she said she was very experienced in working with HIV was clearly new to Lyme Disease and I suspect took away more information than she contributed to the meeting. If she gains funding for her studies only time will tell whether they will be useful, especially in view of the search for better, more precise testing looking for active infection and the report of several promising new tests as indicated by Dr Fallon.

Stella Huyshe - Shires, Chair of Lyme Disease Action - Working together?

Demetrios Loukas a patient who had initiated and organised the parliamentary meeting in January spoke - he thanked Dr Brooks for attending the Parliamentary meeting and for agreeing to have  a meeting with Dr Armin Schwarzbach and Dr Chris Newton to discuss testing methods.

There was a questions and answer session which I understand was due to be documented and be made available.

As any links to slides and questions and answers become available I will add to this post.

For a couple of photos of the event see Lyme Disease Action Facebook page
 https://www.facebook.com/122058224483868/photos/pcb.897931963563153/897929623563387/?type=1&theater
and
https://www.facebook.com/122058224483868/photos/pcb.897931963563153/897930723563277/?type=1&theater

PHE have provided copies of presentations at Lyme Disease Action website
http://www.lymediseaseaction.org.uk/latest-news/phe-open-day-march-25th/

Demetrios Loukas speech http://lookingatlyme.blogspot.co.uk/2015/04/a-patient-voice-at-phe-meeting-on-lyme.html



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