Dear All, as I was not allowed to finish my presentation due to time pressures, here is the final part of the VIRAS microscopy submission. Please feel free to discuss/challenge these ideas or suggest alternatives: The disparaging of microscopy by PHE and the objections that they raise are so unscientific and illogical, that it must raise questions about their motives, objectivity and competence. In spite of years of patients repeatedly raising concerns, providing information and references, PHE have not improved their methods or knowledge of this dangerous pathogen. Their anti-science and anti-patient conduct is unacceptable. Therefore we urge the government to remove Lyme borreliosis testing, monitoring and reporting from PHE’s remit and allocate these roles to borreliosis experts that understand the pathogen and the disease that it causes. The Lyme Reference Laboratory at Porton Down fails both patients and doctors and is not fit for purpose. The only realistic course to improving this situation lies in the expertise of laboratories located in countries that are getting to grips with this epidemic. We propose that a cost-effective arrangement could be made for testing and evaluation of UK patients, with experienced and competent laboratories, such as those in Germany. Some UK patients that can afford to, already take advantage of and give good reports of the services that these laboratories and clinics provide. All UK patients deserve access to this quality of healthcare. Accurate and early detection of borreliosis cases and proper retesting to identify some of the thousands of missed cases, could save the UK so much money and patients so much suffering that this option would be economical and humane. We cannot waste any more time trying to educate PHE. They do not do science. They do public relations, propaganda and spin. They do sycophancy to their precious ‘international experts’. They cannot tell the difference between an opinion and a fact and they parrot Lyme test kit manufactures making exaggerated claims for their products. None of this has any place in pursuit of the scientific endeavour. The horrendous accounts of loss and suffering of patients have no effect. PHE have already laid plans to train GP’s in how to get rid of us – or as they put it: ‘“disengagement” strategies’. That is what they think of us and our illness and our suffering. Therefore regardless of what arguments we raise or what evidence we provide they will not change their methods. We must take borreliosis out of their control for our sakes, and the sakes of the thousands of infected that had false negative tests, the thousands of infected that may never even have heard of Lyme, and the many thousands that will yet get infected but not be diagnosed or treated. The only real course to improving this situation lies in the expertise of German, American and other foreign laboratories in countries that are getting to grips with this epidemic. We do not have and will not be provided with accurate tests by PHE. Whatever their actual agenda might be, detecting and diagnosing TRUE cases of borreliosis, are not included. We are the ones that need a ‘disengagement strategy’. We must disengage from this useless organization and get OUR government to make provision for proper testing, diagnosis and treatment. So here’s to a better and healthier future without Public Health England.
Posted on: Tue, 20 Jan 2015 07:46:55 +0000
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