Discussion in 'BioMedical ME/CFS News' started by Andy, Sep 26, 2019.
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.
Will this be a full-scale prevalence study like the ones Jason and the CDC did?
Yes, it will include a full prevalence estimate for Australia.
From the latest Emerge Australia newsletter:
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.
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.
Here's an updated link (the one in the initial post no longer works).
@Simone, can you tell us more about how it is being done and when there will be a result?
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.
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