We are very much aware of the recognised cross-over in symptom presentation with people who were diagnosed with Lyme Disease but for whom antibiotic treatment of the initial bacterial infection either did not occur or was reportedly ineffective, or was effective at removing the infection but not all the symptoms, and the symptoms most associated with ME/CFS.
Some refer to this as post-infectious Lyme disease or post-treatment Lyme disease syndrome, and as ME/CFS is also believed to be triggered by bacterial as well as viral infection (as well as in other ways) we think this debate is relevant.
It also provides some useful background to current knowledge and to the very valid concerns about Lyme Disease in Scotland and the UK.
The following provides an overview of the debate that took place at Holyrood on Wednesday, 14th June
That the Parliament recognises that Lyme disease is affecting many people across Scotland, including in Aberdeenshire; considers that there is a lack of awareness and education to prevent further infections in 2017; notes calls for the issues surrounding diagnosis and treatment to be explored further; further notes calls for public education on the dangers of tick bites and for doctors to become better informed so that patients are not left undiagnosed, and notes the support for Lyme Disease UK’s campaign to help increase awareness of this disease.
Sponsor: Alexander Burnett (Aberdeenshire West) (Con)
…I am honoured to have facilitated the attendance of representatives of charities such as Lyme Disease UK and Lyme Disease Action as well as the attendance of businesses and groups from across the country, including the Outward Bound Trust, the Forestry Commission and the Grampian and Angus glens moorland groups. I also welcome those constituents and others from throughout Scotland who have taken the time to attend the debate. Many of them either suffer from Lyme disease or have a loved one or friend who does.
…what is Lyme disease? It is caused by a spirochaetal bacterium from the genus Borrelia and is the most common tick-borne human infectious disease in the northern hemisphere.
…Notably, the World Health Organization has confirmed that there is a 65 per cent increase in Lyme disease cases each year worldwide, and those are only the reported cases.
…In our national health service, we need to educate staff to ensure that, when they review symptoms, they do not exclude the possibility of Lyme disease. Although the Scottish Government’s response to a recent question of mine stated that it is considering improving knowledge of Lyme disease among our health professionals, I urge the ministers to ensure that those methods are effective.
…Our NHS guidelines for treating Lyme disease are outdated and not fit for purpose.
…I therefore urge the Scottish Government and the NHS to collaborate with local charities, businesses and other groups to update our approach to tackling Lyme disease and help to stagnate the rate of infections in Scotland.
Maree Todd (Highlands and Islands) (SNP):
…Another complication at that early stage is that we cannot rely on blood testing, because lots of people do not test positive in the early stages of infection. However, if the disease is left untreated or if treatment is delayed, the person can go on to develop a chronic illness, which is sometimes called the great imitator because the symptoms are non-specific and similar to those that are experienced with a number of other conditions. Diagnosis then becomes tricky.
…Last year, I had the pleasure of meeting Dr Roger Evans and his team at Raigmore hospital in Inverness. He is one of the UK’s leading experts on the disease, and they are doing fantastic work up there to collect data and improve the quality of testing. If the research is fruitful, it could transform the testing and care of folk with Lyme disease not just in Scotland but around the world. An important piece of work that the team did involved testing samples from blood donors to get an idea of the prevalence of the disease in Scotland. Some 4.2 per cent of the population tested positive, but that rate more than doubled to 8.6 per cent in the Highlands. It is no wonder that we are leading the way on research into the condition.
Donald Cameron (Highlands and Islands) (Con):
…The Royal Forestry Society notes that there are around 1,200 confirmed reports of Lyme disease each year and around 100,000 worldwide.
…With the Scottish health protection network, NHS Western Isles is organising a symposium on Benbecula in August, which I hope to attend. The symposium aims to raise awareness nationally of the public health priority in relation to ticks and Lyme disease, and to explore possible interventions.
Colin Smyth (South Scotland) (Lab):
…The number of diagnosed cases has increased from fewer than 30 in 1996 to 220 in 2015, and GPs estimate that only 20 to 40 per cent of cases are referred. With a growing numbers of cases, it is an appropriate time to re-evaluate our approach to research, identification, treatment and public knowledge surrounding Lyme disease.
…Lyme Disease Action has stated:
“there are no conclusive tests for Lyme Disease currently in routine use in the UK that will accurately diagnose Lyme Disease or distinguish from past infection.”
…The similarities in symptoms between Lyme disease and many other conditions, and the co-infection that often comes with being bitten by ticks, also cause difficulties with diagnosis. … In particular, we should ensure that the testing that is currently available is extended to all Borrelia species found in Scotland and that more reliable tests that do not rely on antibody responses are introduced.
John Finnie (Highlands and Islands) (Green):
…on one of the checks that I made on the number of people who are affected by it, there was a fifteenfold difference between the lowest and the highest estimates.
…“Although endemic in the UK, Lyme disease does not cause outbreaks requiring urgent public health action following diagnosis of a case and is not transmissible through person to person contact. As a result, it is not a notifiable disease in Scotland.”—[Written Answers, 27 June 2016; S5W-00860.]
…However, it is important to note that the organism that causes Lyme disease … is a notifiable organism under the Public Health etc (Scotland Act) 2008. There is also surveillance of any positive blood test by diagnostic laboratories in Scotland.
…the UK Government referred to three separate systematic reviews on the diagnosis, treatment and transmission of Lyme disease, which it said would provide evidence to inform future decision making. Those reviews are expected to be published in the autumn of this year. National Institute for Health and Care Excellence guidance on the diagnosis and management of Lyme disease is in development and is expected to be published in July 2018.
Liam Kerr (North East Scotland) (Con):
… a study by Public Health England showed that there are tick infection rates of up to 48 per cent; that 4 per cent of Scottish blood bank donors unknowingly had Lyme disease; and that there are 1,200 confirmed reports of Lyme disease in the UK each year, perhaps 200 of which are in Scotland. The WHO confirms that, each year, there is a 65 per cent increase in the number of Lyme disease cases that are reported worldwide. Even on the basis of a conservative extrapolation, incidence of the disease will reach epidemic levels by 2028.
…According to the Caudwell Lyme disease patient survey, 56 per cent of sufferers were not diagnosed by NHS doctors or testing labs. That is hardly surprising, given that five separate teams of researchers have found that the reliability of the NHS test is lower than 60 per cent.
…Currently, less than 3 per cent of GPs have taken the free online Royal College of General Practitioners course on Lyme disease, so Lyme Disease UK is to be commended for encouraging them to complete the course.
The UK Department of Health must also be recognised for commissioning three separate clinically driven, evidence-based reviews on the diagnosis, treatment and transmission of Lyme, which are expected to be published later this year. Treatment must be intensively reviewed. Using doxycycline for a few weeks may not work and we must investigate a more multifaceted approach, using, for example, different antibiotics, biofilm breakers, cyst-type antibiotics and immune support.
The Minister for Mental Health (Maureen Watt):
…Scotland’s multi-agency health protection network has absolutely recognised the importance of Lyme disease, and it is for that reason that a specific multi-agency Lyme disease sub-group was established last year. The sub-group met for the first time in February 2016 and quickly identified three areas of work that it viewed as being priorities: workforce education and development, improving public awareness, and improving surveillance and diagnosis.
…Resources have been produced and are being developed, including webinars and podcasts that are aimed at front-line health professionals. There are also information resources on the Health Protection Scotland website and the NHS Education for Scotland website.
Work is also under way to develop and place articles in professional magazines, and I know that the sub-group is actively looking at other ways of raising awareness among the various health professionals. For example, in the first three months of 2017, a series of professional development sessions on Lyme disease was delivered to community pharmacy groups across Scotland. The sub-group will also consider how to make use of existing resources that can be deployed—I know that the Royal College of General Practitioners has developed an online course on Lyme disease, which will be considered in terms of its appropriateness to the Scottish context.
You can read the official record of the full discussion, here.