Watch our Q&A video with a Lyme disease researcher – your questions answered

Our charity’s mission is to fund research which finds a more accurate test for Lyme disease, and treatment that is able to cure every patient, all to be available on the NHS.

To highlight this need for research further, and to give our followers the chance to pose some questions and learn more, we organised a recorded Q&A session with NIHR (National Institute of Health Research) Research Fellow, John Tulloch.

John Tulloch Profile and research projects

John has conducted a number of relatively high profile studies into Lyme disease here in the UK, and we have found him to be very supportive of the community. He can often be found chatting to patients at Lyme disease conferences.

He has worked on projects with Public Health England and is currently at the Health Protection Research Unit for Emerging and Zoonotic Infections at Liverpool School of Tropical Medicine.

His published studies include:

Incidence of newly diagnosed cases of Lyme disease in primary care between 1998-2006, April 2020

Characteristics and Patient Pathways of Lyme Disease Patients: A Retrospective Analysis of Hospital Episode Data in England and Wales (1998-2015)

What is the risk of tick borne disease to UK pets?

We were really grateful to him for partaking in this Q&A as part of our Lyme Awareness Month content, particularly at this busy time for those working in infectious diseases!

The Q&A and what we asked

We sent a call out for questions to our mailing list – thank you very much to those who responded.

You can watch the Q&A here, or by clicking on the image below.

We hope you find it interesting, and let us know your thoughts!

The questions asked were as follows:

  1. Can you give explain the possible reasons for the difference between estimated case numbers in your most recent study around Lyme disease in primary care, and the Cairns study from July last year?
  2. Do you think that the increase and eventual overtaking in use of the “suspected” Lyme disease codes could suggest a lack in confidence from GPs in diagnosing Lyme disease?
  3. Research shows that there seems to have been a sharp increase in cases noted between 2013 and 2016 – what are your thoughts on why this might be?
  4. What impact do you think COVID-19 will have on any planned or future research?
  5. Why isn’t Lyme disease notifiable?
  6. You had a study on using Twitter to map against where Lyme disease cases are. How might social media be used to this effect?
  7. The paper which dealt with who was most likely to contract Lyme disease, showed that men were more likely to get it with peaks in childhood and late middle-age. Why was there no attempt to correct the press saying that it was older white women who were most at risk?
  8. In the paper which dealt with hospital admissions, it was indicated that more late middle-aged white women were admitted through the hospital system. Given that more men seem to contract Lyme, there was little effort to work out why these women (probably not given to wasting NHS time) accessed secondary care directly. Some patient experience suggests that women are commonly thought by doctors to be making up their symptoms as a result of being menopausal, and therefore have to access A&E in an effort to get symptoms taken seriously. Why do you think this was?
  9. What percentage of ticks carry borrelia? Are you testing ticks in parks and gardens in the UK in order to inform the public and public health England?
  10. Do you think Lyme disease is rare in the UK?

Our apologies go to anyone who sent in questions that we were not able to answer. John is not a diagnostic or treatments scientist and therefore was not able to give comment on some of these areas. We will look for someone to cover this area in our next Q&A!

How can I support research?

As John mentions in the video, coronavirus will undoubtedly have an impact on Lyme disease research funding, which means it’s more important than ever that our charity is able to fund projects and keep looking for answers that bring better care for UK Lyme patients.

Every penny we receive in donations goes direct to our research fund, and we campaign to help raise awareness around this need for research.

You can make a one-off donation here, or become a LifeLyme member here and make a small gift each month.

Posted in Blog posts, Charity news.