Re: Lyme disease: chronic illness is rare, say experts
This article is reporting on a briefing on Lyme disease held at the Science Media Centre. Unfortunately it undermines, without evidence, the recent Open BMJ report on rising incidence of Lyme disease in the UK (1) and key recommendations and information included in NICE Lyme disease guideline (2), RCGP Lyme disease toolkit (3) and PHE educational literature (4), including:
- the need for greater awareness of Lyme disease
- that infected ticks are found throughout the UK and Ireland
- that tests for Lyme disease have limitations. Both false-positive and false-negative results can occur
- not to rule out the possibility of Lyme disease in people with symptoms but no clear history of tick exposure.
The NICE guideline ‘recommendations aim to improve awareness of Lyme disease, to promote early investigation and treatment, and to optimise outcomes in people with Lyme disease. They will change current practice by prompting healthcare professionals to think about the possibility of Lyme disease. This may result in an increase in testing and treatment, but the cost of this is likely to be balanced by the benefits of improved recognition and early treatment.’ (5) (Section 1.1, Awareness of Lyme disease - rationale and impact)
In contrast, this article reassures clinicians that it is acceptable to assume that their patients who have had Lyme disease are unlikely to develop chronic illness, when many are not experienced in assessing patients for either acute or late Lyme disease or aware of the limitations of all tests. The take home, headline message is damaging and unfounded, devoid of any evidence-based research.
Moreover, figures quoted to support the conclusion that people who have had Lyme disease rarely go on to have chronic problems, simply don’t add up. PHE incidence figures for 2018/2019 state 1695 cases, 1157 of which were acute (6). Logically the remaining 538 of these cases were patients experiencing symptoms who were diagnosed late. To state that, ‘fewer than one in twenty experience residual symptoms’ is highly misleading if these figures are correct. We are unaware of the evidence relating to the 2,000 cases who have been successfully treated. Where can this be found? This figure has not been quoted previously. PHE advice states that, ‘more serious symptoms may develop several weeks, months or even years later if Lyme disease is left untreated or is not treated early on’.(4) Where is the evidence that treatment has been successful and how can this be stated with any certainty?
The media briefing that informed this article, and many others in national press this week, puts patients with Lyme disease at greater risk of being given an incorrect diagnosis and being left untreated, possibly leading to long term debilitating symptoms. Already stigmatised patients may also find conversations about Lyme disease with their doctors, family members and friends more difficult. Awareness, understanding and empathy towards patients by the general public may also be tainted by these reports. Indeed, we are already hearing anecdotal reports of these experiences from parents and patients this week. Patients who may be suffering from a treatable, bacterial infection deserve to be treated and respected, and not marginalised further by careless and unevidenced reporting.
It is disappointing to see these unscientific and damaging messages being amplified following a year of increased awareness, supported by the NICE Lyme Disease Quality Standard (7) urging local authorities to raise awareness in their communities and emerging tools for doctors. (2) (3)
References:
1. Incidence of Lyme Disease in the UK: A Population-Based Cohort Study. Victoria Cairns, Christopher Wallenhorst, Stephan Rietbrock, Carlos Martinez. https://bmjopen.bmj.com/content/9/7/e025916
6. Common Animal Associated Infections Quarterly Report (England and Wales): First Quarter 2019 Health Protection Report Volume 13 Number 20 14 June 2019. Table 1. Animal associated infections in England and Wales: rolling four-quarter laboratory reports by specimen date, Q2 2018 – Q1 2019 (weeks 14/2018-13/2019) compared to the previous year https://assets.publishing.service.gov.uk/government/uploads/system/uploa...
7. NICE Lyme Disease Quality Standard. Quality Statement 4 – Awareness of Lyme Disease ‘Local authorities organise health promotion activities with organisations in their area to raise public awareness about how to prevent Lyme disease.’ https://www.nice.org.uk/guidance/qs186/chapter/Quality-statement-4-Aware...
Rapid Response:
Re: Lyme disease: chronic illness is rare, say experts
This article is reporting on a briefing on Lyme disease held at the Science Media Centre. Unfortunately it undermines, without evidence, the recent Open BMJ report on rising incidence of Lyme disease in the UK (1) and key recommendations and information included in NICE Lyme disease guideline (2), RCGP Lyme disease toolkit (3) and PHE educational literature (4), including:
- the need for greater awareness of Lyme disease
- that infected ticks are found throughout the UK and Ireland
- that tests for Lyme disease have limitations. Both false-positive and false-negative results can occur
- not to rule out the possibility of Lyme disease in people with symptoms but no clear history of tick exposure.
The NICE guideline ‘recommendations aim to improve awareness of Lyme disease, to promote early investigation and treatment, and to optimise outcomes in people with Lyme disease. They will change current practice by prompting healthcare professionals to think about the possibility of Lyme disease. This may result in an increase in testing and treatment, but the cost of this is likely to be balanced by the benefits of improved recognition and early treatment.’ (5) (Section 1.1, Awareness of Lyme disease - rationale and impact)
In contrast, this article reassures clinicians that it is acceptable to assume that their patients who have had Lyme disease are unlikely to develop chronic illness, when many are not experienced in assessing patients for either acute or late Lyme disease or aware of the limitations of all tests. The take home, headline message is damaging and unfounded, devoid of any evidence-based research.
Moreover, figures quoted to support the conclusion that people who have had Lyme disease rarely go on to have chronic problems, simply don’t add up. PHE incidence figures for 2018/2019 state 1695 cases, 1157 of which were acute (6). Logically the remaining 538 of these cases were patients experiencing symptoms who were diagnosed late. To state that, ‘fewer than one in twenty experience residual symptoms’ is highly misleading if these figures are correct. We are unaware of the evidence relating to the 2,000 cases who have been successfully treated. Where can this be found? This figure has not been quoted previously. PHE advice states that, ‘more serious symptoms may develop several weeks, months or even years later if Lyme disease is left untreated or is not treated early on’.(4) Where is the evidence that treatment has been successful and how can this be stated with any certainty?
The media briefing that informed this article, and many others in national press this week, puts patients with Lyme disease at greater risk of being given an incorrect diagnosis and being left untreated, possibly leading to long term debilitating symptoms. Already stigmatised patients may also find conversations about Lyme disease with their doctors, family members and friends more difficult. Awareness, understanding and empathy towards patients by the general public may also be tainted by these reports. Indeed, we are already hearing anecdotal reports of these experiences from parents and patients this week. Patients who may be suffering from a treatable, bacterial infection deserve to be treated and respected, and not marginalised further by careless and unevidenced reporting.
It is disappointing to see these unscientific and damaging messages being amplified following a year of increased awareness, supported by the NICE Lyme Disease Quality Standard (7) urging local authorities to raise awareness in their communities and emerging tools for doctors. (2) (3)
References:
1. Incidence of Lyme Disease in the UK: A Population-Based Cohort Study. Victoria Cairns, Christopher Wallenhorst, Stephan Rietbrock, Carlos Martinez. https://bmjopen.bmj.com/content/9/7/e025916
2. NICE Lyme Disease Guideline https://www.nice.org.uk/guidance/ng95
3. Royal College of GPs Lyme Disease Toolkit https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/lyme-di...
4. Lyme Disease: Signs and Symptoms Ref: PHE publications gateway number: 2015169PDF, 315KB, 4 pages. https://assets.publishing.service.gov.uk/government/uploads/system/uploa...
5. NICE Lyme Disease Guideline. Section 1.1, Awareness of Lyme Disease - Rationale and Impact https://www.nice.org.uk/guidance/ng95/chapter/Recommendations
6. Common Animal Associated Infections Quarterly Report (England and Wales): First Quarter 2019 Health Protection Report Volume 13 Number 20 14 June 2019. Table 1. Animal associated infections in England and Wales: rolling four-quarter laboratory reports by specimen date, Q2 2018 – Q1 2019 (weeks 14/2018-13/2019) compared to the previous year https://assets.publishing.service.gov.uk/government/uploads/system/uploa...
7. NICE Lyme Disease Quality Standard. Quality Statement 4 – Awareness of Lyme Disease ‘Local authorities organise health promotion activities with organisations in their area to raise public awareness about how to prevent Lyme disease.’ https://www.nice.org.uk/guidance/qs186/chapter/Quality-statement-4-Aware...
Competing interests: No competing interests