Tuesday, 31 March 2015

THE COUNTESS OF MAR ADDRESSES A PARLIAMENTARY MEETING ON LYME DISEASE

The Countess of Mar has kindly given permission for me to share her Introductory Speech at the Parliamentary meeting on Lyme Disease held in January


Parliamentary debate on the 19th Jan 2015.

On behalf of everybody here may I thank Simon Hughes and his Parliamentary Assistant, Michael Paul for so kindly arranging this meeting on Lyme disease.

Toyber’s dictum is that absence of evidence is not evidence of absence. You might also say that if you don’t look you won’t find. Obviously, people don’t see if they won’t look, but also if they look they might not see. For hundreds of thousands of years humans looked at the planets at night. These “wandering stars” along all heavenly bodies circled the earth. As soon as Galileo looked at Jupiter with a telescope instead of with his naked eye he found four new celestial bodies circulating the planet. Once he reported this discovery the earth centred view of the universe was proven to be incorrect and lead to his persecution and imprisonment.

There are parallels with Lyme disease.

Cultivation of bacteria and looking for them with microscopy has been the gold standard for detecting disease for over 150 years, and is still used by researchers working on Lyme disease to prepare borrelia bacteria for experiments, and to produce antigens for commercial test kits for the disease. However use of microscopy in a clinical environment is attacked and, despite a large number of research projects over the last 20 years which demonstrate persistence of the borrelia spirochetes after standard antibiotic treatment, many people will not open there eyes to this fact.

Vision also seems to be dimmed regarding the incidence of Lyme disease. In the US the Centers for Disease Control and Prevention reported exponential growth of Lyme disease from 1999 to 2006 after which the data levelled off between 20 and 30,000 cases per year. This was not due to a change in tick activity and human infections but was caused by administrative counting problems, and in 2014 the CDC reported that analysis of the evidence indicated that the incidence was 300,000 cases a year - a 10 fold increase.
In Europe, Germany reported that in 2007/8 there were 271 cases per 100,000 people which would represent 213,000 cases for the whole country, and more recent data suggests that by 2010 almost 800,000 patients were diagnosed and treated for Lyme. Using very strict criteria, Scotland report over 16 cases per 100,000 people in Tayside and over 50 cases per 100,000 people in the highlands. Why does England report fewer than 2 cases per 100,000 people? I am sure that ticks have not declared unilateral independence from the Union.

Lyme patients all too often hear that they cannot have Lyme disease. Some of the reasons given are that they don’t live in an endemic area; have no evidence of a tick bite; are negative in a serology test; have been given a dose of antibiotics and so cannot have Lyme, and then they are sent on their way without further investigation or treatment of any sort. This was expressed clearly by an NHS consultant when he said: “Lyme Disease had become a fashionable disease…. is cured by a short course of antibiotics …And: If you have patients with chronic Lyme and seronegative Lyme the put them in touch the Lyme Disease Action charity”.

Surely this is not just passing the buck but abrogation of the duty of care. Does it not try to sweep the inconvenient truth away so that the experts can follow the mad dash to reduce antibiotic use, leaving patients deprived of the treatment they so vitally need to take then from often severe and disabling illness to a level of health were they can contribute to society. They certainly do not want to be a burden… not on their family or on society.


I am looking forward very much to hearing our speakers today and hope that, as a result of this meeting, the diagnosis and treatment for Lyme disease will be advanced.

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% 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



Tuesday, 10 March 2015

DR JUDY MIKOVITS - INFECTIOUS PATHOGENS AND THEIR ROLE IN CHRONIC DISEASE



Dr Judy Mikovits signing PLAGUE - 'One Scientist's Intrepid Search for the Truth about Human Retroviruses and Chronic Fatigue Syndrome (ME/CFS), Autism and other chronic Diseases'

On Sunday 8th March AONM - Academy of Nutritional Medicine held a conference - Lifting the Veil -Infectious Pathogens & Their Role in Chronic Disease.

From AONM website - 'On Sunday March 8th 2015, the Academy of Nutritional Medicine (AONM) is holding a ground-breaking conference led by top specialists from around the world, all of them renowned for their expertise on infectious pathogens and chronic disease.

The specialists’ combined approaches are revolutionary, and raise serious questions about how and why it is that treatments that are insisted upon by mainstream medicine do not effectively deal with the root causes of certain conditions.' go to the website for further information http://www.aonm.org/lifting-the-veil.html

This was an excellent and very interesting conference especially so for me as it brought together International experts in a variety of fields giving the audience much thought provoking information.

All the detailed presentations moved along at a fast pace making it only possible for rudimentary note taking. I understand there will be a DVD available through AONM.

It was a great treat for me to meet Dr Judy Mikovits, having followed, on line, events unfolding over her research with XMRV a retrovirus and possible connections to patients with ME/CFS. 

I recently read Plague, by Kent Heckenlively and Judy Mikovits -  available on Amazon

A gripping story of research controversies, something many in the Lyme, Autism and ME/CFS communities are already well aware of, but perhaps not to the lengths Judy was subjected to. A thought provoking, sobering and perhaps scary read, but something I recommend everyone read.

Judy's excellent presentations will be available on the DVD but she has already posted similar on the website which she shares with Dr Ruscetti 

Professor Malcolm Hooper Introduced the meeting with his speech - Looking for clarity and Understanding on Chronic Syndromes of Unknown Origins giving a brief history of the troubles ME/CFS, Gulf War and Multiple Chemical Syndrome patients have endured over many years.

Professor Puri treated us to two presentations one Lyme Disease including Cardiovascular, Urological and Neuropsychiatric Sequelae and the other Autism - gut infection and Fibromyalgia research news.

Dr Armin Schwarzbach shared his knowledge of Multiple infections by Borrelia burgdorferi and other tick borne pathogens - symptoms, diagnostic tests and consequences for therapy.

Dr Philip Keilman discussed Natural Therapeutic Interventions for Patients with Chronic Infection.

Thank you to AONM for having organised such an interesting and successful event.