Aims

We aim to:

Increase the awareness of the dire situation with Lyme disease and related tick-borne diseases in the UK.
Make doctors and the public aware that there are no current UK guidelines and the American guidelines11 which are currently being used are deeply flawed, do not represent the available scientific evidence, and as such have been widely criticised 12, 13, 14

We demand that the Department of Health, the Health Protection Agency and Health Protection Scotland take action to re-examine their currently biased stance on Lyme disease. Current official information is misleading, inaccurate and not helpful to patients or doctors. Doctors and Medical professionals desperately need training on Lyme disease- this should be provided as a matter of urgency. Medical training should take into account ALL the available scientific evidence, not just that which denies the existence of Chronic Lyme. There are many things we simply do not know about Lyme Disease. A recent literature review process, carried out by Lyme Disease Action and The James Lind Alliance found that there are 69 questions regarding Lyme disease which are not currently answered by the scientific literature. This literature review was undertaken by an independent information specialist and the top ten unanswered questions 15 were prioritised by patients and doctors in a collaborative meeting .

The UK needs clear, evidence-based, unbiased guidelines on Lyme disease. We urge the above authorities to work with patients, Lyme Disease Action and the James Lind Alliance in writing UK guidelines and initiating research.

We demand that until such guidelines become available, UK doctors are given the freedom to diagnose Lyme on clinical grounds, and doctors are enabled to treat with Long-term antibiotics if they see that this could be appropriate/beneficial for the patient. A trial of antibiotics for suspected Lyme cases should be encouraged and early cases should be treated promptly and aggressively, to avoid long-term complications.

We demand that the current NHS tests for Lyme be re-examined. There is evidence that the current tests are missing as many as 66% of the genuine cases of Lyme disease16. The current over-reliance on these fallible tests should be stopped, and figures for the UK prevalence of Lyme should include clinically suspected cases.

11  http://cid.oxfordjournals.org/content/43/9/1089.full
12  http://www.lymenet.de/literatur/dbg_idsa_statement.pdf
13  http://www.lymediseaseaction.org.uk/wp-content/uploads/2011/06/isdaapr2009.pdf
14  http://www.ilads.org/lyme_disease/lyme_testimony.html
15  http://www.lymediseaseaction.org.uk/wp-content/uploads/2013/01/JLA-top-10.pdf
16  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132383/