Chamber and committees

Petitioner submission of 08 November 2021

PE1662/UU - Improve Treatment for Patients with Lyme Disease and Associated Tick-borne Diseases

The Scottish Government has now held the following meetings which at least one petitioner attended:

• Round table - 14th April
• Round table - 22nd June
• Awareness Raising sub-group session – 6th October

We also met with Maree Todd, who has voiced her support. 

The meetings so far have been promising but more is needed.

We also believe there was an Education sub-group session but we were not invited and we have not seen the minutes. We would like petitioner attendance at all meetings and public visibility of all minutes.

Our petition requests the Government to address:

• currently limited treatment for Lyme Disease and associated tick-borne diseases
• education of medical professionals
• the lack of reliability of tests
• the full variety of species in Scotland
• the presence of 'persister' bacteria which are difficult to eradicate
• the complexities caused by the presence of possibly multiple co-infections
• and to complement this with a public awareness campaign.

As mentioned in submission PE1662/TT, sub-groups have been set up to look at education of healthcare professionals and public awareness raising. Despite the fact that public awareness is a complementary request in our petition, it has received by far the greatest attention. Education discussion has focussed primarily on early recognition of Lyme disease by GPs and pharmacists. Whilst these are useful to prevent future chronic illness, our primary focus is on improving treatment for those who are currently chronically ill after a tick bite and for whom treatment according to the current NICE guidelines has not been successful. Our main petition request is that Scotland establishes specialist treatment centres for tick-borne diseases and that all clinical staff are educated on the ILADEF Physician Training Program. Nothing has been done to address this.

Currently, even when patients have a history of a known bite, when tests are negative many patients are being told they have chronic fatigue, functional neurological disorder, etc., or it is "all in their head", and are denied treatment that could cure them. Either consultants need to be much better educated to consider all tick-borne illnesses despite the current lack of tests, or there needs to be much better testing to provide a definitive diagnosis that would allow the correct treatment to be initiated. Although there has been some discussion about testing, neither that nor consultant education has been tackled enough to make a difference to chronically ill patients.

We specifically want to target the presence of 'persister' bacteria which are difficult to eradicate. However, when discussion has touched on this, the conversation has been shut down with comments like "We will have to disagree on that one". In the past, this has been a controversial subject, but there is now a wealth of research supporting persistence. If consultants will not embrace the new research, patients will continue to suffer. A new accredited continuing medical education course on the evidence for persistent Lyme and promising new treatments is now available: “Antibiotic efficacy for treatment of Lyme disease” by Monica Embers. Prof. Embers is a leading expert in investigating B. burgdorferi infections in a nonhuman primate model. We want all consultants in Scotland who treat tick-borne illnesses to take the 32-minute course (in additional the ILADEF Physician Training Course).

Our request for specialist treatment centres (ideally one in the North, one in the central belt) has resulted in a promise to set up a Managed Clinical Network for Infectious Diseases. However, this does not meet our needs. Patients with complex tick-borne illness want to be treated by specialists who are immersed in the topic, who treat thousands of patients, and who therefore have a wealth of experience to draw on. We also want holistic treatment at a multi-disciplinary centre covering all the specialties involved in such a complex disease. A Managed Clinical Network would dilute the experience similar to the current situation when many patients find it impossible to get successful treatment in Scotland.

On research, although there is some limited research on testing, it does not include treatment research or our request to implement existing tests. Two tests look potentially useful: 

• TickPlex Plus tests for multiple tick-borne infections but we have been told validation of such a test would be difficult because, for most of the infections, there is no existing test to compare it to. We will never make headway unless we start somewhere – though the ideal would be a test which did not rely on antibodies.
• The Phelix Borrelia Phage Test increases the detection of Lyme disease and can distinguish early and late disease. Although it still requires independent validation, we question why the Scottish reference laboratory could not undertake such validation to more quickly bring a promising test to patients.