A speaker from the HPA had agreed to give a presentation at a Sept. 17 conference organized by the advocacy group Lyme Disease Action. When he checked with his superiors, they said “no way.”

The UK’s Health Protection Agency (HPA) is an arm of the Department of Health, and functions rather like the Centers for Disease Control (CDC) in the United States. Lyme Disease Action is an advocacy group, which sponsors conferences and other educational activities.

According to Stella Huyshe-Shires, chair of Lyme Disease Action, her group had asked an HPA scientist to give a presentation about other tick-borne diseases, not Lyme itself. He had been willing to do it, but his employers put the kibosh on that. Huyshe-Shires said her group was “hugely disappointed” in that response from HPA.

In an email to CALDA, Huyshe-Shires referred to the recent article in the British medical journal Lancet, in which several American authors of the contested IDSA Lyme treatment guidelines excoriated Lyme advocates for being “anti-science.”

In her email, she stated, “It is views like that which have coloured perceptions in the UK. Many clinicians believe that patient charities are anti-science and that they do not understand the issues….That is not the case. In the UK, we (LDA) are striving towards extending knowledge and we firmly believe in evidence-based medicine. As evidenced by our current project with the James Lind Alliance to document the uncertainties in Lyme diagnosis and treatment.”

Huyshe-Shires says a replacement speaker has been found, and the conference will go on as planned at Wills Hall, University of Bristol.

Click here for conference registration information.

Click here for more information about Lyme Disease Action.

Click here to read what the Lyme Policy Wonk had to say about the recent Lancet article.

This article was written by Dorothy Kupcha Leland, CALDA’s VP for education and outreach. She can be contacted at dleland@lymedisease.org.