Vector-Borne Infection Research-Analysis-Strategy
November 2017

Analysis of the NICE Lyme disease draft Guideline 'Research Recommendations'

Recommendation #3

The NICE draft guideline for Lyme disease states:

"3/ Seroprevalence of Lyme disease-specific antibodies (and other tick-borne infections in the UK population)

What is the current seroprevalence of Lyme disease-specific antibodies and other
tick-borne infections (such as babesiosis, ehrlichiosis, anaplasmosis, bartonellosis or
Q fever) in people in the UK when performed using UK-accredited assays (ELISA
based on C6 antigen and immunoblot)?

Why this is important
This information is not currently available and is of high priority. Without understanding the underlying population seroprevalence of Lyme disease-specific antibodies in the UK, it is impossible to interpret incidence data accurately and to understand fully the epidemiology of Lyme disease in the UK. The available data suggests there are areas of higher and lower prevalence in the UK but with many gaps in knowledge. The information will help to interpret serology of individuals living in endemic areas, where positive serological results may be more common and may not always indicate an acute or recent infection. This will be of benefit to patients and healthcare workers in the UK treating or affected by Lyme disease. Many patients are concerned about the possible presence of co-infections transmitted by ticks: these are thought to be rare in the UK (compared to, for example, the east coast of US) but we have no data to confirm or refute this. Better evidence may improve diagnostic and treatment decisions."

Seroprevalence is irrelevant compared to the serious issues
Given the urgent need for improvements in patient care for Lyme disease in the UK, this gormless recommendation beggars belief. NICE have again compounded entirely separate issues (in this case seroprevalence and coinfections), suggesting that they do not actually take either of these seriously. Furthermore, contrary to what NICE claim, 'seroprevalence' is largely irrelevant to the care of patients who are suffering illness caused by Lyme. The project as described would in fact predictably obstruct the care of Lyme patients, but it would support Public Health England and their policy of denying treatment for Lyme disease, even for patients with positive NHS tests.

This research would produce predictably misleading information, especially in view of the proviso for using tests that are known to be inaccurate. This statement appears to show a willingness to make concessions to the concerns of patients. However, when read in the context of the remainder of this draft guideline and the historical claims of PHE and the HPA, it can be recognised as just another ruse to protect those responsible for the incompetent management of Lyme disease. Furthermore, it facilitates those who wish to enforce antimicrobial stewardship on doctors and an unsuspecting patient population, and maintain the illusion that regarding Lyme in the UK - everything is under control.

Claiming that this is 'high priority' appears to be in order to create an impression that Lyme disease is being taken seriously. Whereas the predictable result of this stratagem would be to show that healthy people are seropositive in substantial numbers - just as has been found in other countries. This would aid RIPL and the former Reference Laboratory at Southampton to defend their disgraceful record of obstructing the diagnosis of patients requiring treatment, but do nothing for doctors or their patients who suffer serious and chronic illness due to infection with Lyme bacteria.

E.g.: "Screening of IgG antibodies against B. burgdorferi in blood donors as a proxy for the presence in the healthy population showed seroprevalences of 2.7% both in Hamburg and Bavaria [16], [17]. In France (3.2%) [18], Italy (4.9%) [19] and Romania (4.3%) [20], similar proportions of seropositive individuals among blood donors were assessed. In population-based surveys, higher seroprevalences were seen in Germany (Berlin: 8%, n = 3,736 [21]; Bavaria: 15%, n = 4,896 [22]; Baden-Württemberg: 16.9%, n = 1,228 [5]) and Finland (19.3%, n = 3,248 [23]). In individuals with higher risk of exposure to ticks such as forestry and agricultural workers seroprevalences between 8% and 52% have been described [15], [18], [19], [24]-[26].", etc., etc. (http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0041321 https://doi.org/10.1371/journal.pone.0041321)

Producing inaccurate data - (an inevitable result of using inaccurate tests) would predictably mislead professionals and result in the mistreatment of patients. Even if accurate seroprevalence figures could be produced, knowing how many of the population have antibodies to Lyme species bacteria, cannot inform the diagnosis or treatment of individual patients. This is exactly the same with the seroprevalance of other infections, e.g., mononucleosis, measles, etc., which does not determine the diagnosis or treatment of individual patients. Information that is genuinely 'high priority' is the prevalence of the infection in the chronically sick population, i.e., the presence of Lyme bacteria, damaging or potentially damaging tissues and leading to symptoms and illness or exacerbating other illnesses.

Coinfection
"Many patients are concerned about the possible presence of co-infections transmitted by ticks".
As this concern was specifically excluded from the Scope and has not been properly addressed in the draft guideline and is represented only as a concern of 'many patients', it is safe to assume that this is not a concern of PHE or of NICE. This statement is just another stratagem to try and mollify patients. It in no way addresses the evidence, including that provided in the stakeholder responses to the Scope. E.g., Lyme Disease UK: page 53, 54, 72. Lyme Research UK: page 95, 176, 285. VIRAS: page 159, 327. Caudwell LymeCo: page 2, Lyme Disease Action: page 33 and many other references to Lyme coinfections which can cause serious complications in the effective treatment of Lyme disease and some of which represent serious diseases in their own right.

Opportunistic infections are not even mentioned by NICE, showing ignorance and/or denial of Lyme disease causing immune-suppression.

Conclusion
The NICE draft guideline Research Recommendation #3 is in the interests of Public Health England and their reference laboratory, who want 'justification' to deny diagnosis and treatment. There are far more important aspects of Lyme which are genuinely 'high priority'.

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