Ms Kerry Lawless:

We have the research that has been submitted to and accepted by the World Health Organization. There are 800 journal articles which are significant pieces of research that have been assessed and accepted by the World Health Organization. Therefore, there is the science and the research and the new codes were based on this overall look at the research. It is contested, but through its process the World Health Organization stepped back and looked back at all of the research, decided what would be accepted and what new codes would be designated such that the complications in late stage chronic Lyme disease are accepted and there are codes for same.

In May 2019 at the World Health Organization there will be a pro formadecision and work will begin on the guidelines. Therefore, it is coming and countries have until 1 January 2022 to start implementation. At it is on its way, the question is whether we should step back, open our eyes, look at all of the research and move from the contested and fixed positions. Do we stop mimicking America where everything is so politicised and extreme and say we are a small nation, that we have an issue, that we have experts, most of whom are in this room, and that we need to sit together to engage in proper dialogue and look at all of the research, including that which does not support our opinions because it is still valid and has been peer reviewed?

We also have to look at the experience of people who ask not to be told that they have chronic Lyme disease because they were treated for it and recovered, the fibromyalgia and their chronic fatigue went. Not everyone who has had a diagnosis of fibromyalgia suffers from chronic Lyme disease. The issue is complex because so many of the symptoms overlap, but with the right care and treatment patients recover. Nobody goes into medicine to make patients worse. Everyone in this room went into and stayed in medicine-----