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I will consider some of the comments that have been made so far, in detail.

I just had some additional thoughts. There have been some quite useful comparisons, of the 2006 guidelines from the ILADS and IDSA (from the UK) – showing in effect, how different they are (ie the ones available at the time). I think the differences go a very long way both 'wide and deep', and have very different ethical approaches to the idea of consultation, diagnosis and treatment, the role of the physician etc.

http://www.lymediseaseaction.org.uk/what-we-are-doing/conferences/2007-2/

Obviously those are 'ethical debates' that need to take place, and some may consider them to have a strong place in evidence-based medicine (others may not). However, central to that would be a consideration of 'what the consequences on patients' and clinical outcomes, would/could  be if
 certain guidelines were applied in certain ways - very difficult - if standardised practice excludes certain clinical approaches or research, then that evidence is simply not available in the first place, other then in case series data.

However, I'm primarily interested in taking the more 'standard' evidence-based medicine approach, and applying it to both sets of guidelines. However, if the new ILADS guidelines are based on 'Grade' methodolgy, but the previous IDSA ones are not – how can that comparison or review be made?

Is there not potential bias by taking only one set of guidelines, and only examining that in detail critically.

What I would like to see is some independent (meaning less conflicts of interest) assessment that can identify, some of the key differences - and 'why and how' these differences arose -  some differences may be evidence-based, and others not. Surely it would be useful to know which were, and which
 weren't (if that were possible).

I need to point to my own conflicts of interest, having been quite involved in these issues, both as a patient and as an advocate, and as an author of sorts. So I may not be the best participant for an independant group. However, I can help in terms of directing people to key documents, and perhaps offering to be an 'official' patient, if the process used to look at these guidelines does involve 'patient involvement', and/or can recommend others with relevant academic qualifications in the same position.


I am a social scientist with biological sciences background. I dont have formal EBM training however, I have worked in epidemiology/public health research settings. I would be interested in doing some joint work if it was aimed at academic publication. My interests are more towards the ways by which scientific evidence is used in policy making. 


Kate Bloor