The ME/CFS Health and Welfare Survey began in January 2014 with a discussion at the Emerge Australia office. We were talking about the sorts of questions and requests for help we were receiving via the Support and Information Line. Through experience we understood what each person affected by ME/CFS understands – that even the mildest case of this condition can have a significant effect on your life, let alone the profound effect that a severe case can have.
What we want to achieve
It took over 15 months from that point for the survey to become the research that so many of you participated in in 2015. Along the way, it became more and more clear that answering a few questions would not advance the understanding of ME/CFS in the wider community. We wanted to make this information count. The research aimed to survey people affected by ME/CFS to help identify:
- What impacts the condition has on education, employment, mental health, and social interaction
- How people with ME/CFS access healthcare, and what helps or hinders obtaining a diagnosis and treatment
- What support services people with ME/CFS access and what helps or hinders this access
- What steps can be taken to improve quality of life and outcomes for people affected by ME/CFS in the areas of health, welfare, education and employment
There is a great amount of anecdotal evidence available from Emerge Australia and our members that will help to understand these impacts, but our literature search showed that there was nothing comprehensive enough to show the full impact for people in Australia. We also saw the need for a scientific study that had the potential to be taken seriously by health professionals, researchers and policy makers.
As the survey developed, we entered into discussions with Federation University about their being able to head up the project. With their involvement we were able to gain ethics approval. An important step to boost the possibility of publishing our results in the kinds of scientific journals that health professionals and policy makers take seriously. Once Federation University agreed, we started to work on the questions within the ethics framework provided.
What happened next was astonishing
We were hoping for around 200-250 responses. We received 777. That is 777!!!!! More than three times what we were hoping for. As you will all appreciate, answering 100 questions with brainfog, while in pain, or with any one or more of the myriad of symptoms that accompany ME/CFS is a very big ask. But the people who participated in the research were brave, generous and persistent and we were really astonished and grateful for the incredible amount of effort that went into the responses.
This provides us with a significant amount of information to help us achieve the project’s research goals and to help effect a positive change in attitudes and knowledge about ME/CFS, which might help to promote increased access to critical health and financial services for people affected.
A bit about the method
The survey was open for responses from February 2015 to May 2015. As mentioned, there were 777 adults with ME/CFS who responded to advertisements calling for people to take part in an anonymous online or paper survey. Participants were able to complete the survey over several sittings if they wished. They were not required to answer all questions. The survey was a mixture of rating responses and multiple choice questions, as well as open-ended questions, for participants to give qualitative information on their experiences.
Participants across genders from every State and Territory in Australia responded to the survey. The majority (approximately 60%) were from major cities, with the balance from regional, rural and remote areas.
While the level of participation was fantastic, having more responses than we hoped for, creates its own challenges. This research is unfunded, all of the researchers are providing their time in a voluntary capacity. Federation University have provided ethics oversight on a pro bono basis as part of their commitment to the community. With a significant set of data to analyse and with a volunteer research team, the work is taking more time than we anticipated. This doesn’t mean it’s not happening – those of you who volunteer know just how much a group of dedicated people can achieve.
Right now, we are making sure the data analysis and results are as accurate and clear as possible so that they can be recognized as representative of the experience of Australians with ME/CFS. This part of our work is slow but very important to the potential acceptance of our results by health professionals, researchers, and policy developers. The quantitative responses are being analysed using SPSS statistical analysis software. Although the software is being used, the information still needs to be reviewed carefully at each step. Once certain milestones in analysis are met, the longer written responses will be analysed for recurring themes.
Given the diverse nature of the questions asked, and the sheer volume of answers provided, it’s going to be necessary for clarity and focus, to divide the work produced into several different papers for publication. This will ensure that the information is clear, accurate and useful.
As many of you know, the process of having research peer reviewed can be long and drawn out, but it is critical for acceptance of your work by researchers and practitioners, and those who turn to them for information. Because this is such a unique piece of work in Australia, it’s critical that this step is taken to ensure the best chance of acceptance in the medical, political and research communities. Once the information has been analysed and the papers written, they need to be submitted to the appropriate journals for peer review. Submitting an article doesn’t guarantee that it will be published and so this process can take some time – months and even a year or two.
There are no short cuts…
It is wonderful that in January 2016, we were able to provide an overview of some of the early research information in confidence to Senator Scott Ludlum when he asked questions at a Budget Estimates Hearing. This data was preliminary and needed to be kept confidential due to its preliminary nature. The data and results will need to undergo further rigorous review before being made public. If information is released to the public too early, this can cast doubt on the study or its results, and can compromise the peer review process. If this were to happen it could weaken the message contained in the final papers. The last thing that we want to do is to make redundant the incredible effort our participants put into responding to the survey. We want the results of your efforts and ours to have the potential to create change!
The whole research team are incredibly motivated by the effort and honesty that participants put into this project. We are working steadily and with great care to make sure that the work done by each of the participants counts when this work is published for the wider community. We will update you with news and progress as we continue with this exciting project.
Written by Amanda Kelly on behalf of the ME/CFS Health and Welfare Survey research team; Dr Cara Büsst PhD, M.Sci, Ms Nanette Gerlach, Federation University, Ms Amanda Kelly, B.Bus, ex-CEO of Emerge Australia, Ms Anna Murphy, research assistant and Ms Charlotte Williamson, research assistant.