Research Priority Survey Launches

UK-registered charity Lyme Disease Action has launched a second survey, the next step in finding out what we do and don’t know about the treatment and diagnosis of often-misdiagnosed Lyme disease.

Funded by the National Institute for Health Research, the James Lind Alliance has been working with the charity Lyme Disease Action to document the uncertainties in diagnosis and treatment of Lyme disease.

In 2011 doctors and patients submitted more than 900 questions. Removal of duplicates and consolidation boiled those down to about 50 separate representative questions.

Following a full literature search by an information specialist, the list of 39 uncertainties has now been published and a survey has opened to gather opinions on the top 10 priorities for research. This list of priorities will then feed into the national research agenda.

To read about the identified uncertainties, and participate in the survey, please visit:

The survey is now open and will close at 10am on Monday 10 December 2012. It will not take long to complete.


Background information: Lyme disease occurs across the UK, in rural countryside, suburban gardens and city parks. Passed to humans by the bite of an infected tick, Lyme disease causes a range of symptoms which may include a circular red rash, headaches, a stiff neck, extreme fatigue, muscle and joint pain, and disturbances of sight, hearing, digestive system and sleep. If left untreated it can progress to the joints, the heart and the nervous system. Although the number of tick bites reported has been increasing recently, some doctors still think that Lyme disease is rare, and consequently there are many cases of people diagnosing their illness themselves by using the internet.

Lyme Disease Action ( is a charity striving for greater awareness of Lyme disease and associated tick-borne diseases.

Ends 3 December 2012

Note to Editors: A Lyme disease fact sheet, 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 (

For more information, or to speak to Stella Huyshe-Shires, the Chair of Lyme Disease Action, please contact Sue Ockwell or Helena Hamlyn via email – – or ring 020 8891 4440.