Medical Research Future Fund win for Emerge Australia : Epidemiology and Health Economic Impacts of ME/CFS - Anchor Study

Andy

Andy

Retired committee member
The impact of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is the focus of new research which includes Emerge Australia CEO Dr Heidi Nicholl as a co-Chief Investigator to ensure that patient voices are heard. The project is led by the Menzies Institute for Medical Research and also includes Deakin University.

Funded by the Medical Research Future Fund (MRFF) Targeted Health System and Community Organisation Research Grant Opportunity, ‘The ANCHOR Project’ will look at the prevalence and economic costs of ME/CFS in Australia and its far-reaching impacts on patients, carers, the broader community and the health system.

The Anchor group comprises researchers from across the University of Tasmania, Deakin University and Emerge Australia – the national consumer support and advocacy group.
Click to expand...
https://emerge.org.au/medical-resea...alth-economic-impacts-of-me-cfs/#.XYxesKjYo3E
 
A health economics study was one of the recommendations from the NHMRC ME/CFS Advisory Committee, who’s report was released a few months ago. This grant was initiated based on the draft report, and is the first of the committee’s recommendations to have been implemented.
 
Split thread
From the latest Emerge Australia newsletter:
Prevalence

To understand the prevalence of ME/CFS in Australia we will use de-identified, confidential data from general practices across the country. All records containing ME/CFS and related terms between 2014 and 2020 will be provided to the researchers, allowing them to estimate the prevalence overall, and more specifically by sex, urban/rural settings and age groups. The patient advisory group for the project advised that many people living with ME/ CFS do not attend GP surgeries on a regular basis, and that this may contribute to an underestimate of prevalence. To address this, we will be conducting focus groups and long interviews with people living with ME/CFS and carers. One of the topics that will be covered will be attendance and engagement with GPs to help us to understand the estimate based on the data we receive from general practices.

In addition, as there have been more than 20 diagnostic criteria proposed for ME/CFS, we will conduct a clinical audit to assess diagnoses against the Canadian Consensus Criteria (CCC). This will involve a research nurse visiting a range of general practices and for each patient with a diagnosis (or mention) of ME/CFS, we will assess whether this fulfils the CCC based on notes throughout the medical record.
Click to expand...
I would satisfy the Canadian clinical criteria, but I doubt I would be seen as satisfying it based on my GP notes. My earlier GP retired. I have been with this practice over 15 years but I was diagnosed before that so wouldn't mention all my symptoms during consultations.

However, now that I think about it more, perhaps if they did keep a record of when I first attended, I did give them a list of most of my symptoms. So if that was put into the system, perhaps I would be counted as a case.

Anyway, I think this system may underestimate the prevalence of those satisfying the Canadian clinical criteria.
 
Last edited by a moderator:
Dolphin said:
I would satisfy the Canadian clinical criteria, but I doubt I would be seen as satisfying it based on my GP notes.
Click to expand...

Yep, I would definitely qualify too, but if you look at my GP treatment notes you'd never know it.

You would have to wade through letters from my original diagnosing consultant and that would have been pre the Canadian criteria I think. Can't remember for sure, but he might possibly have used Fukuda in his letter along with CFS (as well as ME) on the basis that those were the terms the GP was most likely to recognize.
 
https://www.emerge.org.au/anchor-study
What is the ANCHOR project about?

The ANCHOR project aims to estimate the number of people in Australia living with ME/CFS, and the social and economic burden of ME/CFS for individuals, their families and carers (both formal and informal), and Australian society more generally.

Your participation will help us advance our knowledge of the social, quality of life and health economic impacts of ME/CFS in Australia. While there will not be any direct benefits to individuals who participate, we hope that the information you share with us will help to shape the advocacy and resourcing decisions for people with ME/CFS and their carers in future years beyond the duration of the study.

Overall, the purpose of this study is to better understand the social, financial and quality of life impacts for people with ME/CFS in Australia.

How can I be involved or find out more?

We invite people with ME/CFS and carers of people with ME/CFS to participate in online focus groups and/or interviews where we will ask questions and listen to people with ME/CFS and their carers about their lived experience of the disease. Participation is voluntary. Your choice to take part or not will not affect the healthcare services that you currently receive or your relationship with Emerge Australia. We expect that a focus group will take no more than 1.5 hours of your time (in total) and you are free to leave at any time.

All discussions that occur during the focus groups are confidential. The focus groups will be audio recorded and will then be transcribed. All identifying information will be removed from the information to ensure confidentiality.

If you are over the age of 18 years, you can agree to be involved and register as a potential participant by contacting Dr Julie Campbell (University of Tasmania) by email at Julie.Campbell@utas.edu.au Upon contact, we will also provide a detailed information sheet and will require a completed consent form if we formally invite you to participate in the focus groups or interviews.

This study has been approved by the University of Tasmania’s Social Sciences Human Research Ethics (HREC) Committee, and the University of Melbourne’s Ethics Committee. If you have concerns or complaints about the conduct of this study, you can contact the Executive Officer of the University of Tasmania’s HREC (Tasmania) Network on (03) 6226 2975 or email ss.ethics@utas.edu.au. The Executive Officer is the person nominated to receive complaints from research participants. You will need to quote number 18683.

What will happen to the information collected during the research?

Our findings will be discussed and published in academic/research journals and other platforms such as Emerge Australia’s website/newsletter and places like “The Conversation”. It is important to note that all results from this research will be reported in aggregated (grouped together) and/or deidentified ways. This means that future readers of the findings will not know who has shared what information. Nothing that you tell us will be shared as being from you.
Click to expand...
 
https://www.emerge.org.au/anchor-study
Here's an updated link (the one in the initial post no longer works).

What is the ANCHOR project about?

The ANCHOR project aims to estimate the number of people in Australia living with ME/CFS, and the social and economic burden of ME/CFS for individuals, their families and carers (both formal and informal), and Australian society more generally.

Your participation will help us advance our knowledge of the social, quality of life and health economic impacts of ME/CFS in Australia. While there will not be any direct benefits to individuals who participate, we hope that the information you share with us will help to shape the advocacy and resourcing decisions for people with ME/CFS and their carers in future years beyond the duration of the study.

Overall, the purpose of this study is to better understand the social, financial and quality of life impacts for people with ME/CFS in Australia.
Click to expand...

@Simone, can you tell us more about how it is being done and when there will be a result?
 
Hutan said:
@Simone, can you tell us more about how it is being done and when there will be a result?
Click to expand...

The study is using data from medical records to identify likely ME/CFS cases. The researchers are aware that there are issues with this (ie: both likely under-estimates from patients not disclosing their diagnosis to their doctor and over-estimates if using broad search terms like “chronic fatigue”). Focus groups are being used to collect qualitative data around what patients do and don’t disclose to their doctors and why, to assist with interpreting the quantitative data.

Socioeconomic and psychological burden will be estimated using things like Medicare data and cost diaries (for medical and other expenses), surveys, as well as focus groups on patients’ and carers’ lived experience.

The study has included extensive consultation with Emerge’s Patient Advisory Group.

in terms of results, I’m not sure. Like everything, the study has been impacted by COVID-19. The results definitely won’t be available this year.
 
You must log in or register to reply here.
Back
Top Bottom