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
my original post on the meeting is at http://lookingatlyme.blogspot.co.uk/2015/01/lyme-disease-parliamentary-meeting.html
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.