How we started

The Internet facilitated communication between those diagnosed with Lyme and those with similar symptoms. This led in 2001 to the foundation of EuroLyme, an Internet patient support group. The first Tick Borne Diseases conference was held in 2001.

In 2002, it became apparent to the on-line participants that numbers were growing and that a formal organisation was needed to lobby for the treatment of patients, raise awareness and strive for more medical research. A small group of those communicating via EuroLyme decided to form the registered charity Lyme Disease Action, as a separate and formal organisation.

Lyme Disease Action became a registered charity in 2003 and organised the 2nd Tick Borne Diseases conference at York University.

  • 2004 the LDA website was started to act as a repository of information.
  • 2005 a conference was held at Sheffield University and conferences have been held annually since then.
  • 2006 Leaflets “What is Lyme Disease” and “Lyme Disease in Neurology & Psychiatry” were produced.  A parliamentary lobbying campaign started to make MPs aware of the situation faced by patients with possible Lyme disease.
  • 2007 First Early Day Motion 874 was raised.
  • 2008 a second Early Day Motion (958) was raised calling for UK Clinical Guidelines and a seminar held in the House of Commons “Evidence for Change”.
  • 2009 LDA provided a written submission to the IDSA review panel with evidence that IDSA guidelines are not applicable to the UK. This was concurred with by the review panel who issued a special caution.
  • 2010 LDA had a meeting with Anne Milton MP, Minister for Public Health as part of the continuing lobby campaign.
  • 2011 LDA achieved accreditation to the Department of Health’s Information Standard and was confirmed as a producer of high quality health information. Dr Sandra Pearson, consultant psychiatrist, was appointed as medical Director.
  • 2012 LDA started exhibiting at international and national medical conferences in order to provide information direct to health professionals. Three particular people working for the Health Protection Agency and the Department of Health retired and the Lyme testing laboratory moved to Public Health England, Porton. This significantly changed the landscape.
  • 2013 LDA funded a project with the James Lind Alliance which confirmed uncertainties in the diagnosis and treatment of Lyme disease. These were entered onto the UK DUETs – the Database of Uncertainties in the Effects of Treatment. Regular meetings between the specialist Lyme laboratory continued. The first Public Health England conference on Lyme disease saw patients and health professionals working together.
  • 2014 LDA developed an e-learning module together with the Royal College of General Practitioners and paid to make this freely available to all health professionals. LDA also contributed to an awareness video with Hiblio TV, the digital TV Health Services under Torbay Hospital.
  • 2015 LDA provided a briefing for a House of Lords debate on Lyme disease and had several review articles published in medical journals.

LDA continues to strive for the prevention and treatment of Lyme disease and associated tick-borne diseases. Have a look through our activity log to see more detail of what we are doing.