Frequently asked questions

DSCATT is a term that was created by the Australian Government Department of Health in 2018. It stands for ‘Debilitating Symptom Complexes Attributed to Ticks’. The government said they were “aware there are many Australians who are experiencing chronic debilitating symptoms which many associate with a tick bite. As there is currently a lack of evidence on the cause and origin of this condition, the Government has chosen to describe this patient group as having Debilitating Symptom Complexes Attributed to Ticks (DSCATT).”

Other names that have been used to describe this patient group include “Australian Lyme Disease”, “Lyme disease-like Illness” and “Chronic Lyme Disease”. In their 2018 position statement, the Australian government highlighted that another reason they developed the term DSCATT was to “to move away from the stigma and controversy” associated with labels such as Lyme, Lyme-like, and Chronic Lyme disease.

Our proposed treatment program is underpinned by the accepted model of health and illness which views the individual as a whole, in which biology, psychology and social/environmental factors interact to influence health.

While it is true that individuals with chronic or complex illnesses are more likely to experience difficulties with their mental health compared to people without chronic illness, our intervention is not just about treating depression or anxiety symptoms. And it must be stressed that this illness is not ‘all in your head’. But the brain does play a pivotal role in how we experience symptoms of illness. This program targets how our brains process incoming signals from our body, and how we respond to these signals. Because the target of this program is brain and behaviour, it is considered a ‘psychological’ treatment.

The treatment program we have developed for DSCATT is based on Acceptance and Commitment Therapy (ACT). ACT is an active therapy, which involves more than simply talking about your illness or concerns with a clinician. It requires you to do what is within your control to build a fulfilling life that you value, even when you are faced with the physical discomfort and psychological distress that may come with your illness. ACT increases your ability to respond to adversity and the demands of your illness in flexible and adaptive ways, and enable you to reconnect to a rich and meaningful life.

This program is not designed to ‘cure’ DSCATT. Rather, the program is developed to help manage the impact of DSCATT, to get you back to living a life which is meaningful to you. However, we anticipate that it will also change the way that you experience your symptoms, and that your symptoms may improve because of it.

• Weekly one-on-one sessions for 16-weeks (either face-to-face or via Telehealth) with a neuropsychologist
• Personalised psychological and practical skills training which aim to connect you back with what’s important to you, maintain wellbeing and limit the impact that DSCATT has on your day-to-day life
• Worksheets and exercises to help understand and practice those skills between sessions

While the program is tailored to your individual needs, the key components explore the following areas:

• The brain and symptom experience: You will learn about the ways that the brain processes bodily sensations like pain, and the impact that cognition (thoughts, emotions) and behaviour (activity, rest) can have on the experience of symptoms.
• Clarifying your values: Working together to connect with what is truly important to you, the kind of person you want to be, and what you want your life to be about. Values can be thought of as the ‘compass’ that can help guide our actions to live a full and meaningful life, even while living with a chronic condition like DSCATT
• Doing what matters: A method of establishing achievable, and effective goals & actions which are driven by your values.
• Identifying what is getting in the way: Identifying when thoughts and behaviours take you away from doing the things that are truly important to you, and to develop strategies that get you back into the ‘driver’s seat’ of our actions.
• Individualised modules: Here we provide tailored strategies on some areas of health and wellbeing which DSCATT can impact, including
  • Sleep strategies
  • Cognitive and memory strategies
  • Self-compassion
  • Managing relationships

Yes. One of the beneficial things about psychology therapies such as ACT is that they can be used in conjunction with other treatments. This is considered a multidisciplinary approach and has been shown to work well when providing care for patients with complex and chronic medical conditions.

You can keep taking medications or have any physical therapies that you need, however, whilst you are completing the program you will not be able to use other psychology-based therapies.

Many people who have DSCATT will have found a tick on them. However, there are other people with DSCATT symptoms who didn’t see a tick – perhaps they had a bite mark, a rash, or work somewhere where there a lot of ticks.

In this trial, we are looking for people who are suffering from a chronic, debilitating illness and have evidence to suggest they sustained a tick bite – whether that be directly observing the tick biting them, or have specific bloods test results which indicate exposure to a tick-borne pathogen.

Yes. Although our research team is predominately based in Melbourne, we know that people with DSCATT live all across the country, particularly in rural areas. Therefore, we will be offering the treatment via Telehealth (e.g. video conference calls) to those who can’t attend in person.

Although we cannot pay you to take part in this study, you will be reimbursed for any reasonable costs you incur. For example, petrol costs and parking fees, or internet/phone expenses (for Telehealth appointments).

If you are waitlisted, we ask that you continue your usual care and treatments. A member of the research team will contact you via telephone 10-weeks, 20-weeks and 32-weeks after you are enrolled into the trial to review your health and wellbeing. You will also be asked to complete some online questionnaires at these timepoints.

After you complete the Week-32 study questionnaires, you will be invited to take part in the 16-session treatment program, if desired (although you won’t have to complete the study questionnaires again)

The reason why there is a waitlist control group is so that the researchers can compare the group of people who go through the treatment program against a group of people with DSCATT who don’t do the program. This will allow the researchers to see if there are any differences between the groups over time – for example, if symptoms improve more so in one group than the other.