By Rachel Makepeace and Sasha Nimmo
‘Meet the Scientists’ is a series of interviews with researchers working on Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome. We hear about current research directly from scientists and meet the people doing such important work to improve our health. The series will introduce early career researchers through to interviewing scientists and clinicians who have been working on the problems for decades.
Chelsea Bartlett (Occupational Therapy honours degree student), and supervisors Julie Hughes (Occupational Therapist) and Dr Laura Miller (Occupational Therapist) are a team from Australian Catholic University (ACU). They are working together on a research project titled: Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Experiences of occupational disruption for adults in Australia. Hughes has published two papers on chronic fatigue syndrome and occupational therapy. Another student at ACU, Grace Miller, is also undertaking a survey of experiences as part of her honours project.
The researchers required participants to have received a medical diagnosis of ME/CFS (no criteria specified) and live in the Brisbane and Gold Coast area of Queensland. Other Queensland researchers (Johnston et al 2016) found a quarter of people diagnosed with ME or CFS by medical practitioners actually had another condition that explained their symptoms; only 62% met Fukuda CFS criteria and only 32% met the ICC ME criteria.
Rachel participated in the ACU’s research and wrote about the experience (see below).
Is Brisbane, and Australia, a good place to be a researcher?
We are based at the Brisbane campus of Australian Catholic University. During the process of completing our research here, we experienced a large number of participant interest in our study, highlighting the significant need for those in Australia with ME/CFS to be heard.
Could you tell us what an occupational therapist does?
As an Occupational Therapist, it is our role to assist people to participate in the things they want to do, need to do, or are expected to do. We do this in many ways, such as by suggesting and implementing strategies, activity adaption, and environmental modification. Examples of this range from fatigue management e.g. energy conservation by doing tasks differently, promoting participation in self-care, productive and leisure occupations, and thus supporting well-being by assisting with continued engagement in these. We have a unique role and we believe there is great potential for OT’s to assist those with ME/CFS in participating in their roles and activities of daily living.
How would you describe the purpose of your research?
The aim of our study, “Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Experiences of occupational disruption for adults in Australia”, is to explore the lived experience of ME/CFS for adults in Australia and how has this disrupted their occupational participation. We want to understand people’s experiences of disruption to participation in their occupations of work, leisure and self-care. We also want to explore the supports available and challenges encountered in regards to their participation.
How did you come up with the idea for this research?
The idea for this research was proposed by Julie who has been interested in the area of ME/CFS since 1997 when she worked as an Occupational Therapist in a ME/CFS service in the UK. She has also published a little in this area previously.
Hughes J, L. (2009). Chronic fatigue syndrome and occupational disruption in primary care: Is there a role for occupational therapy? British Journal of Occupational Therapy, 72(1), 2-10.
Hughes J, L. (2002). Illness narrative and Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A review. British Journal of Occupational Therapy, 65(1), pp 9 –14.
She returned to Australia in 2017 and was surprised to see how ME/CFS still has so little recognition.
You have been conducting interviews, can you tell us about that?
We are currently in the midst of data collection and analysis, and have conducted interviews with five participants. This is only a small research project because it is part of honours student research. In order to include people with a variety of experiences and severities, we have provided the option to participants to either travel to their homes or conduct the interviews via phone.
During the interviews, we asked participants about their individual experience of living with ME/CFS and how it has impacted their participation in self-care activities, leisure and work. We also asked about what has supported them on their journey (facilitators) and what barriers or challenges they may have encountered.
Meeting and being able to listen to the stories of people with ME/CFS was very interesting. As researchers we learnt a lot about the experiences of living with this condition and the number of barriers that come hand in hand. It also became clear that a lot of people relished the opportunity to be heard and believed, which is what made this research even more important to us.
How is your research funded?
Our research is not funded but is part of the Honours programme at the Australian Catholic University.
Why is research into occupational therapy for people with ME and CFS important?
Occupational therapists in other parts of the world have become key healthcare professionals involved in the treatment of ME/CFS. We believe that this could also be the case in Australia.
It is extremely important for research to be carried out which is looking for the cause of the condition however we feel that it is equally important to offer acknowledgement and services to those who are living with the condition. That is where occupational therapy could help.
We have skills and expertise which allows us to help people with chronic health conditions achieve a better quality of living.
Have you worked on other chronic diseases, and how does ME differ?
ME/CFS is very similar to other chronic health conditions in terms of the impact that it can have on the person’s life and occupations however, it remains heavily stigmatised. ME/CFS also receives far less recognition, funding and has very little in the way of supporting services. We would like to see that change.
Do you think your work is making a difference to the way patients are treated?
Once published, we hope our work will not only highlight the experience of what it is like for those with ME/CFS to live with the condition and its associated barriers, but we also hope to show there is a role for Occupational Therapy in Australia to help in further assisting these people participate in their day to day tasks.
What would you like to achieve in your career?
Greater recognition of the role that occupational therapists in Australia can play for people with ME/CFS.
Rachel’s experience as an participant
This research had the participants recruitment notice at Emerge Australia’s Facebook page. They were looking for participants living in Brisbane area and would like to ask questions about life with ME/CFS.
Prior to the selection, they asked me to fill the short Inclusion Criteria form with easy fillable Word document. They needed to make sure participants are diagnosed with ME/CFS by a medical practitioner more than a year ago.
From their email communication, I could tell they did their homework and have reasonable knowledge about ME/CFS.
Chelsea and her supervisor Julie came to my place for the interview because I cannot communicate over the phone. They were both friendly and considerate. We admitted to each other that we were both nervous and it helped me to feel at ease.
I wanted them to understand the over 15 years of life with severe ME before their answering questions, so I tried to explain what happened to me. Once I started to talk, I couldn’t stop. They were both good listeners and encouraged me to talk. When I was finally ready to answer their questions, they said I already answered most of their questions.
Their intended questions were about my experiences of living with ME and how this has impacted my participation in self-care activities, leisure and work, and what has supported me on my journey (facilitators) and what barriers or challenges.
PENE from the meeting was much worse than I expected. I realised I didn’t really talk much after the severe onset of ME, therefore, I didn’t know the possible impact. They both emphasised they didn’t want to cause any negative effect to my health by participating. I really appreciate it for their concerns and kind wishes. However, this is my reality and I was willing to participate knowing the consequences. As patients say to each other, this participation to me was “PENE is worth it”. And, having someone listen to my life with ME was surprisingly therapeutic.