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Lyme disease
A JLA Priority Setting Partnership
Lyme disease is an infectious disease caused by the bite of an infected tick. The charity Lyme Disease Action want this Partnership to be the start of formally discovering the uncertainties in this area.
You may be aware of the debate on Lyme disease and you may also be aware of the lack of UK guidelines. A great deal of literature focuses on the N. American disease, and guidelines from the European Federation of Neurological Societies (1) point out the lack of evidence for treatment recommendations in European disease.
An awareness meeting for the start of the James Lind Alliance Priority Setting Partnership took place on 18th May at the Academy of Medical Sciences in London. Further meetings have also been held in Scotland. A survey was also conducted, which collected treatment uncertainties from over 200 patients, carers and clinicians. Work is now under way to check through these to identify which are genuine uncertainties.
Anne Milton MP, Parliamentary Under Secretary of State for Public Health, supports this JLA initiative as a means of clarifying the evidence on the subject of Lyme disease and allowing us to move forward for the benefit of both clinicians and patients.
It is important that this process engages with as many clinicians as possible who have treated patients with Lyme disease, and across a wide range of specialties: neurology, rheumatology, paediatrics, infectious diseases, as well as general practice, physiotherapy and mental health.
Lester Firkins is the independent Chair of the JLA Strategy and Development Group, and his role will be to chair this Priority Setting Partnership (PSP) over the next months, concentrating on ensuring that, as far as possible, the process is fair and free from bias, and most importantly to ensure that patients and clinicians do have equal voices and that real treatment uncertainties are considered.
The project is being supported administratively by Lyme Disease Action.
Please feel free to contact either Lester Firkins or Stella Huyshe-Shires, chair of LDA, whose email addresses are below, if you have any questions. In particular we are looking for a small number of clinicians to join a steering group to help ensure that this partnership confers widely: if you might be interested in this small commitment (one teleconference/month, some emails and a couple of meetings), then please feel free to ask us about what it involves.
If you know of other colleagues who have treated Lyme disease patients and who may be interested, we should be grateful if you would let them know about this project.
Lester Firkins, Chair, Strategy and Development Group
James Lind Alliance
lesterfirkins@mac.com
Stella Huyshe-Shires, Chair, Lyme Disease Action
Stella.Huyshe@Lymediseaseaction.org.uk
1. Mygland, a, U Ljøstad, V Fingerle, T Rupprecht, E Schmutzhard, and I Steiner. 2010. EFNS guidelines on the diagnosis and management of European Lyme neuroborreliosis. European journal of neurology : the official journal of the European Federation of Neurological Societies 17, no. 1 (January): 8-16, e1-4. doi:10.1111/j.1468-1331.2009.02862.x. http://www.ncbi.nlm.nih.gov/pubmed/19930447.
For a copy of this invitation to participate in the James Lind Alliance Lyme Priority Setting Partnership, and to attend the ‘Initial Awareness Meeting’. click here
JLA Lyme Disease FT comment - letter printed in the letters pages of the Financial Times Weekend Magazine, 08/10/11.
Lyme Disease Action Newsletter, November 2011