About
This research project is investigating the feasibility of a treatment program for Debilitating Symptom Complexes Attributed to Ticks (DSCATT). The treatment is a 16 session psychological and behavioural skills based program designed to be completed alongside DSCATT patients’ existing healthcare. It has been adapted from approaches used to assist in the treatment of other chronic and complex illnesses. The aim of the program is to support people with DSCATT to improve their day-to-day functioning, wellbeing, and quality of life. The study is conducted by The University of Melbourne in collaboration with Austin Health, and has been funded by the National Health and Medical Research Council (NHMRC).
What is DSCATT?
Debilitating Symptom Complexes Attributed to Ticks (DSCATT) are multifaceted, often chronic, debilitating illnesses which are attributed to ticks. The term was created by the Australian Government Department of Health in 2018 following a Senate inquiry which detailed the many issues suffered by this patient group. It was hoped that the term DSCATT could ameliorate the stigma and controversy associated with the use of Australian “Lyme Disease”, “Lyme-like Illness” and “Chronic Lyme Disease” which have previously been used to describe this condition.
Common symptoms of DSCATT include:
- Marked fatigue
- Cognitive difficulties including “brain fog” and poor memory
- Sensory disturbances (e.g. visual disturbances, sensitivity to light and/or sound)
- Myalgia (muscle pain), arthralgia (joint pain)
- Heart palpitations
- Headaches, migraines, dizziness
- Nausea, diarrhoea
- Skin rashes
- Fever
- Seizures, syncope
- Insomnia, mood disturbances and/or personality changes
DSCATT can affect multiple domains of ones health and can cause significant impairment as expressed by a patient below.
I was spending a lot of time in bed because of such- the terrible fatigue that I had with this…you can’t move…you can’t fight it, because you don’t know what you’ve got. And the doctors aren’t helping you, cause, they don’t have enough information…so you you feel trapped.
Person with DSCATT (Sep, 2020)
In efforts to identify the cause of their illness and alleviate symptom severity, people with DSCATT may see several doctors, specialists, complementary healthcare providers, and/or seek treatment overseas – which collectively can cost patients large sums of money. At present, there are no recognised treatments for DSCATT in Australia despite the clear need for effective and accessible treatment options. In addition, patients’ experiences in the conventional healthcare system are often highly negative, partly because they feel they are not believed, dismissed, and/or that their illness is implied to be “all in their head”. A clear cause of their symptoms are often not readily identifiable with mainstream testing methods which creates further challenges for people with DSCATT, as outlined below:
…the problem was the disconnect between…as I said, [I saw] over thirty doctors, I stopped counting…just because I had something that couldn’t be measured by the tests at their disposal…that was the end of the story from their regard…so I guess that’s a big problem, feeling frustrated with that.
Person with DSCATT (July, 2020)
The role for behavioural and psychological interventions in complex medical conditions
An individual’s experience of illness is not just a biological phenomenon. Rather, biological, psychological, social and environmental factors interact in one’s experience of health and illness. Psychological and behavioural interventions are now considered part of standard management practices for a variety of complex and chronic illnesses including cancer, multiple sclerosis, Parkinson’s disease, chronic fatigue syndrome, traumatic brain injury and stroke. These interventions can be particularly useful for physical illnesses where biological treatment alone hasn’t restored wellbeing, or where quality of life is still impaired.
There are many different types of psychological and behavioural treatments, however in this project we will be exploring whether a tailored program informed by principles of Acceptance and Commitment Therapy (ACT) will help people with DSCATT. ACT is an ‘active’ form of therapy which involves more than simply talking about a patient’s concerns. In collaboration with the clinician, ACT builds strategies and techniques required for a person to do what is within their control to build a fulfilling life that they value, even when faced with the physical discomfort and psychological distress that comes with living with a chronic, debilitating illness. ACT aims to increase a person’s ability to respond to adversity and the demands of their illness in flexible and adaptive ways.
