Australia’s NHMRC ME/CFS Advisory Committee draft report released for public consultation

[MyalgicE]

Took me a while but here’s ME Australia’s response.
https://meaustralia.net/2019/03/25/...recover-from-chronic-fatigue-syndrome-and-me/

I was surprised there wasn’t more of an outcry about the draft report claiming that 99% of people with ‘post-viral fatigue syndrome’ recover within two years! Unless you’ve had it for more than 7 years, where they reckon the recovery rate drops to 50-70%.

It’s unlikely to be motivating for the government to change guidelines or fund research if they are told almost everybody gets better already.

I’ve also been made aware that this is why NDIS applications are denied.

 

[Esther12]

Took me a while but here’s ME Australia’s response.
https://meaustralia.net/2019/03/25/...recover-from-chronic-fatigue-syndrome-and-me/

I was surprised there wasn’t more of an outcry about the draft report claiming that 99% of people with ‘post-viral fatigue syndrome’ recover within two years! Unless you’ve had it for more than 7 years, where they reckon the recovery rate drops to 50-70%.

It’s unlikely to be motivating for the government to change guidelines or fund research if they are told almost everybody gets better already.

I’ve also been made aware that this is why NDIS applications are denied.

I feel like there's just been so much to read recently that a lot of us are struggling to keep up, and having important things pass us by. Thanks to everyone trying to put together careful responses to things like this.

 

[Sean]

I am flat out keeping up with a few threads here, and one or two links in them.

 

[Cheshire]

Thread about the ME Australia’s response to the draft report from the NHMRC here.

 

[Simone]

Took me a while but here’s ME Australia’s response.
https://meaustralia.net/2019/03/25/...recover-from-chronic-fatigue-syndrome-and-me/

I was surprised there wasn’t more of an outcry about the draft report claiming that 99% of people with ‘post-viral fatigue syndrome’ recover within two years! Unless you’ve had it for more than 7 years, where they reckon the recovery rate drops to 50-70%.

It’s unlikely to be motivating for the government to change guidelines or fund research if they are told almost everybody gets better already.

I’ve also been made aware that this is why NDIS applications are denied.

I think there’s an important distinction here: the report isn’t claiming that 99% of people recover, its recounting what a very old study (the data is from the 1993 AIHW study, and compiled in the 2003 study) reported on recovery rates. That’s not to say that those stats aren’t problematic. They are. But I think it’s an important distinction.

And I don’t think it’s true to say that there wasn’t an outcry. 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. 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.

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).