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 the EuroLyme discussion board 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.
. . and in the following 20 years . .
- 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 until 2018.
- 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 was raised in parliament.
- 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. An email help desk was launched for patients.
- 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 new specialist Lyme laboratory at Porton 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 and a forestry journal. A primary care exhibition was attended and several talks provided for the general public.
- 2016 LDA had several articles published in medical journals and presented scientific posters at NordTick 2016 and the annual conference of the Health Protection Research Unit in Emerging and Zoonotic Infections. Five talks for the general public and one for physiotherapists were provided and text for a Duke of Edinburgh Awards Scheme manual. There were interviews for both BBC radio and television and a webinar for health professionals. LDA contributed to the NICE Guideline scoping workshop and commented on the draft scope.
- 2017 LDA attended several exhibitions and held a workshop for first aiders. A poster was presented at a James Lind Alliance conference and 2 trustees attended the International Symposium on Tick-Borne Pathogens and Disease in Vienna. A nursing article was published and a talk provided to consultants at a PHE conference. LDA’s Explore project was initiated. An LDA trustee attended The National Institute for Clinical Excellence (NICE) committee meetings drawing up a NICE Guideline for Lyme disease. Stakeholder comments were provided on the draft Guideline.
- 2018 LDA attended exhibitions for health professionals and arboriculturists and provided two talks for the general public. Presentations were made at the annual conference of the Primary Care Dermatological Society and a MedLearn virtual event. Two articles were published in medical journals and the RCGP e-learning module was updated. Funding was provided for the RCGP Spotlight project. LDA provided a member for the NICE Quality Standard committee and presented the NICE Guideline to the NordTick 2018 conference in Finland.
- 2019 LDA completed work on the RCGP Spotlight project and held a workshop for patients and health professionals discussing a specialist clinic for Lyme disease patients. Exhibition stands were manned at a student arboricultural conference and a country show. A parliamentary briefing on vector-borne disease was reviewed and text supplied for NHS England’s primary Care Bulletin. Contributions were provided for a research workshop run by the HPRU EZI.
- 2020 The COVID-19 epidemic curtailed much of LDA’s activity but on-line meetings and discussions were held with UK bodies and researchers. International discussions continued through the NorthTick project and patient organisations in Norway and the Netherlands. A start was made on a new project to develop a Core Outcome Set for Lyme disease with the Comet Initiative to coordinate the project and provide experienced researchers for the work.
- 2021 LDA achieved accreditation to the Patient Information Forum PIF Tick which replaced NHS England’s Information Standard for the certification of trusted health information. A trustee was selected to contribute to the Health Protection Research Unit for Emerging and Zoonotic Diseases (HPRU EZI) Patient and Public Participation panel. International discussions continued through the NorthTick project. The Core Outcome Set research project, got under way during the year and an international steering committee was appointed.
- 2022 A webinar was held to enable people to hear feedback from a researcher whom LDA had funded to attend an international conference during the year. We briefed other UK researchers who were attending, so they could make use of our international contacts. LDA funded the RCGP e-learning module to remain open access for a further 3 years. Cognitant, an organisation providing health information to doctors via Healthinote, asked to include LDA’s information for GPs to use.
LDA continues to provide awareness leaflets free of charge and to work with, and for, the public, researchers and health professionals. Have a look through our latest news, to see what has been going on.