ME Australia’s submission to the National Health and Medical Research Council on their draft report

Hello,
A few people expressed interest in reading ME Australia’s response to the draft report from the NHMRC Advisory Committee, I finally put it online:

https://meaustralia.net/2019/03/25/...recover-from-chronic-fatigue-syndrome-and-me/

 

"The report contained misleading errors, stating 99% of people recover (except in cases lasting more than seven years, the report claims the recovery rate is 50-80%)."

[insert appropriate expletives]

 

Merged thread

Source: ME Australia

Date: March 25, 2019

Author: Sasha Nimmo

URL:
https://meaustralia.net/2019/03/25/...recover-from-chronic-fatigue-syndrome-and-me/

Draft report wrongly claims 99% recover from chronic fatigue syndrome and ME
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Australia's National Health and Medical Research Council (NHMRC) called for feedback on their advisory committee's draft report at the end of 2018.

https://consultations.nhmrc.gov.au/...fts/publicconsultationdraftceoreportmecfs.pdf

https://meaustralia.files.wordpress...the-committees-draft-report-on-me-anc-cfs.pdf

The report contained misleading errors, stating 99% of people recover (except in cases lasting more than seven years, the report claims the recovery rate is 50-80%). This is markedly different to a systematic review of the scientific literature which found that the average recovery/remission rate is 5% (which includes very broad definitions of chronic fatigue syndrome and no definitions of ME).

Continued at first link

 

this draft report (Dec 2018) DOES NOT claim the recovery rate is 99%.

the section that mentions "99% recovery" in "post infectious fatigue" is a review of existing australian research (admittedly sparse, possibly includes Dubbo study) - AFAIK post infectious fatigue is not the same as ME/cfs.

in the following section, the authors review international ME/cfs research, and mention the disparities and need for more accurate information.

in other words, they are saying that we DO NOT KNOW the recovery rate.

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another small anomaly in the "ME Australia" blog / recommendations

it seems that the blog is discussing the relevant scientific knowledge of the NHMRC committee members, while the linked citation is discussing diagnostic criteria for research & clinic.

is it possible that the citation is pointing at the wrong source?

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ME Australia:

the citation links to Australian Parliament questions on notice:

 

It was intentional to include that figure in this draft report to government.

The current Australian definition of chronic fatigue syndrome describes it as on ‘a fatigue spectrum’ and not a distinct disease so that’s why they’ve included this about 99% recovery in this report.

(Australian CFS guidelines: https://onlinelibrary.wiley.com/doi/full/10.5694/j.1326-5377.2002.tb04499.x)

In a review published in 2019, ‘The Burden of Chronic Fatigue in the Community’, Lloyd is using the same language to describe ‘mecfs’.

The Australian Institute of Health and Welfare doesn’t collect data, they advised me when I asked them in 2016 why we were excluded from their once-a-decade burden of disease report. Their response below:

An Australian patient organisation told Parliamentary committee 25% of people don’t recover (I provided the systematic review and asked the patient org to update their incorrect info, which they’ve done but there’s no changing the report).

https://meaustraliamaking/.net/2016/10/10/me-patients-forgotten-in-government-decision-making/

 

Rubbish. I’m a member of the committee, and so privy to the discussions and development of the report, which you were not. Obviously, I can’t disclose the conversations that were had, but I can say that this take is way off the mark.

I agree that the inclusion of those stats is problematic. The issue of those old stats being used came up repeatedly in #MEAction Network Australia’s read-along of the report and was included in #MEAction Network Australia’s key points document: https://app.box.com/s/pge9x4m556sx654uitcckbzloy7hx8pb

The key points document was widely circulated and used by many to form the basis of their submissions. I’m not able to incidate how many submissions mentioned this point about those old and misleading stats yet, as the submissions haven’t been made public. And I can’t say anymore at this stage, except to say that the community definitely responded to this issue, which was good.

Edit to add: NHMRC committee members are not permitted to speak to the media, so I do not give permission for anything I’ve written here to be quoted or mentioned in any article you write (not that I’m saying that you would, but I need to be clear. I don’t want my words appearing on your blog).

 

I don't think this thread is members only is it? If you are concerned about someone quoting your post, isn't it a problem just having the post out there?