Preliminary response to draft guideline

LDA has been asked for comment by The Times and has provided the following preliminary statement for the press:

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We need time to look at the full documents in detail. The charity will be taking feedback from patients and healthcare professionals and will respond formally to NICE before the end of the consultation period in early November.

Our immediate reactions are:

  • We hope the guidance will help raise awareness of Lyme disease as an increasingly important public health issue which should help GPs identify more cases.
  • Although it will provide some positive guidance to GPs in early Lyme disease, the news flash from NICE appears over optimistic that it addresses diagnosis and treatment of complex cases adequately.
  • It is disappointing not to see any recommendation on specialist service provision. It will be necessary for specialists working in this area to be aware of the wider literature on Lyme disease and the limitations of the evidence base from which NICE guidance has been drawn. There will be a need for medical education in order to develop a better understanding of key scientific issues in this area.
  • It is encouraging to see several important research recommendations, particularly addressing UK Lyme disease and the need to clarify the scale of the problem.
  • In 2013 independent research funded by Lyme Disease Action verified many areas of uncertainty and it is good to see that the draft guideline acknowledges these. We emphasise that these uncertainties remain and it is not currently possible to conclusively rule out Lyme disease.
  • People are likely to continue to use private testing services until better tests and clinical services are available within the UK.

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LDA’s Medical Director, Dr Sandra Pearson, is currently attending an international conference on Tick-borne Pathogens and Diseases in Vienna and we need time to read all the documents fully.