Why do we need this?
The HPA’s Lyme Borreliosis Unit (LBU) currently recommends guidelines published by the Infectious Diseases Society of America (IDSA). These guidelines have been widely criticised for failing to consider all the available evidence.
A recent legal investigation by the Attorney General of Connecticut into alleged procedural irregularities in the creation of these guidelines found that they fall considerably short of acceptable practice. In summary, his office found that the guidelines panel did not follow IDSA’s own procedures for declaring conflicts of interest, and promoted another organisation’s guidelines as corroborating their own, when, in fact, the two panels were chaired by the same person and shared several members, and raised serious questions about whether the recommendations reflected all medical science. The IDSA even removed panel members who did not agree with key points.
As a result of the investigation the IDSA agreed to a review of the guidelines. The Connecticut legal team have identified irregularities with the review procedure which suggest the IDSA may be trying to unfairly influence the results.
Despite these problems, the LBU has in the past defended the use of these guidelines, and has repeatedly claimed that the scientific basis of the guidelines was upheld, when in fact, the investigation was not mandated to consider the content of the guidelines, only the circumstances surrounding their creation.
We would expect an independent body such as the HPA to take a more neutral view on the subject, and to accept the findings of the expert legal team that conducted the investigation. The HPA is now reviewing the content of its web pages at our request and changes are expected as the organisation moves across to Public Health England.
There are signs that a group of European specialists who are aligned with the IDSA may be moving towards creating guidelines which largely repeat the current IDSA position. This group appears to be taking a similar approach to the IDSA in that specialists who disagree with their view are excluded from the process, and that they are improperly ignoring evidence that does not conform to their views.
What can we do about it?
We need UK and European guidelines that are inclusive of all the evidence. To ensure that all evidence is considered fairly the panel must include specialists with varied viewpoints, and must include a range of disciplines including microbiologists, researchers and clinicians. There should be a preference for European research, but relevant research from elsewhere should not be discounted.
New guidelines must recognise that definitive best practice cannot be certain in areas where there has been inadequate research, and should inform practitioners of the choices available to them in an even-handed manner.
Please help us to help you by making a donation for ‘Lobby for Lyme’ and all our vital work.
