Lyme Disease review panel: truth in the detail

The Lyme disease review panel of the Infectious Disease Society of America (IDSA) has released its long awaited final report on the 2006 Lyme disease guidelines. As in any report or paper the abstract and the press release are no substitute for the detail.

The panel showed some significant shifts in emphasis, most notably on its prior insistence on sero positivity for diagnosis and its scepticism on the existence of chronic Lyme disease. The panel has, however, deferred its recommended changes until the guidelines are next due for update, but no reasons have been given for this; perhaps it preferred to shift responsibility to other shoulders. The IDSA press release on the subject simply says that the guidelines are unanimously upheld so readers need to access the main report to discover the changes.

Although clinical findings are sufficient for the diagnosis of erythema migrans, the typical early rash of Lyme disease, the 2006 guidelines require diagnostic testing for the later stages because of the subjective nature of individual symptoms. This statement “was felt to be problematic by some members of the review panel. Ultimately the panel was evenly split”. Although half the panel thought change was required, no immediate change to the guidelines has been forthcoming. One is led to wonder why. All the panel has done is to re-iterate and strengthen the statement encouraging doctors to use their own judgement: “Guidelines are not intended to be (and cannot be) rigid dicta, inflexible rules, or requirements of practice.”

Many of the studies documenting survival of B. burgdorferi in symptomatic patients following currently recommended antibiotic treatment are European. Significantly, the panel has warned against extrapolating results from European studies to N American patients and this seems to confirm that the IDSA panel recognises that there is some evidence of chronic Lyme, at least in Europe. Whether the European health authorities themselves will recognise this is a different matter.

Most of these European authorities use the IDSA guidelines as a foundation and validation of their own guidance and that the IDSA panel now warns about “the well-established microbiological and clinical distinctions in Lyme borreliosis on the two continents” should give pause for thought. Should caution be exercised in reverse and US studies be used with caution in Europe?

The principal concern, however, is the spin that health authorities are putting on the release of this report. The headlines all read “Guidelines Upheld”. Do they not read whole reports? Are they trying to hide behind the headlines? Who precisely are they aiming to mislead and why?

The final report of the IDSA Lyme Disease Review Panel can be read here http://www.idsociety.org/Content.aspx?id=16499

The positive spin of the IDSA press release can be read here http://www.idsociety.org/Content.aspx?id=16501

LDA’s submission to the review panel, including European references to documented survival of B. burgdorferi can be read here. http://www.lymediseaseaction.org.uk/releases/lda_37.htm

Lyme Disease Action (www.lymediseaseaction.org.uk) is a UK-registered charity striving for greater awareness of Lyme disease and associated tick-borne diseases.

Ends

23 April 2010

Note to Editors:

1) See also the fact sheet on Lyme disease, attached. http://www.lymediseaseaction.org.uk/releases/ldafacts.pdf

2) A Lyme disease poster, showing how to remove a tick correctly, and leaflets on Lyme disease, are available for publication if required or for readers to take to their own local GP or veterinary practice.

Press: Issued by Lyme Disease Action’s press office (www.lymediseaseaction.org.uk).

For more information, or to speak to Stella Huyshe, the Chair of Lyme Disease Action, please contact Sue Ockwell or Camilla Colley via email – press @ lymediseaseaction.org.uk – or ring 020 8891 4440.