Meeting for Lyme Borreliosis Patients with
Public Health England at the Houses of Parliament
19th January, 2015
Lady Mar's opening speech at the first ever Patient-led Lyme Forum in Westminster on 19th January 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 spirochaetes 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 Centres 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 then 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.
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