Australian radio program: Jen Brea & Panel Discussion

[Sly Saint]

Uncommon Sense with Amy Mullins

"Tuesday 13th March: US film director Jennifer Brea will talk to Amy about her Oscar-shortlisted documentary Unrest, which chronicles her experience and the experiences of many others who have gone "missing" – the sufferers of the significantly debilitating illness Myalgic Encephalomyelitis (ME), aka "Chronic Fatigue Syndrome".

Activist and ME sufferer Anna Kerr, Emerge CEO Dr Heidi Nicholls and Bio21 Institute researcher Chris Armstrong will then join Amy to talk about an upcoming screening of Unrest at RMIT, the situation for Australians with ME, and the research being conducted to uncover the biological mechanisms behind it."

more details here:
https://www.rrr.org.au/program/uncommon-sense/

 

[oldtimer]

I hope this link works.
http://ondemand.rrr.org.au/player/128/201803130900

The interviews are from 53:00 to 2:12:40

 

[Sly Saint]

53.00 - 1.18 Jen Brea
1.26 - 1.35 Anna Kerr
1.35 - 1.44 Chris Armstrong
1.44 - 1.51 Emerge CEO Dr Heidi Nicholls "......people are being harmed"
1.51 - 1.56 Anna Kerr ,(treatments)
1.57 - Look at hope ; funding of medical research Heidi Nicholls,
Chris Armstrong lack of funding (lists ways they currently get funding)
Anna what people can do, #MEAction #millionsmissing

Fane Mensah and David Tuller in the green room..........and will be on the Q and A panel following the screening of Unrest.

Really good program.
So refreshing to have a presenter who has actually researched the subject and asking intelligent questions.

 

[Sly Saint]

 

[Simone]

Merged thread

On Tuesday, there was a program about ME/CFS on the program “Uncommon Sense” on Melbourne’s RRR radio. This program featured an interview with Jen Brea, followed by a panel discussion featuring patient advocate Anna Kerr, Melbourne Bioanalytics Researcher Chris Armstrong and Emerge Australia CEO Dr Heidi Nicholl. It was an excellent program. The program is now available as a podcast, for anyone who missed it live:



It would be terrific if you could show your support to the Uncommon Sense program, on their social media accounts:

Facebook: https://www.facebook.com/UncommonSenseRRR/photos/a.1375489589136260.1073741828.1372672369417982/1815493828469165/

Twitter:

 

[Trish]

Excellent program. Particularly impressed by the interviewer who had really prepared well.

 

[oldtimer]

I thought it was excellent too.

One thing puzzled me. If there are supposedly 250,000 with ME/CFS in Australia and 1 million in the US, which has a population 13 times more, something doesn't add up.

 

[Trish]

I found this link worked:

 

[Lucibee]

something doesn't add up.

Zombie stats. We need better epidemiology.

 

[Lisa108]

something doesn't add up.

Maybe doctors in Australia are better at diagnosing.
Maybe the causative factor for ME is more widespread in Australia.
Maybe certain genetic predispositons are found more often there.
Maybe none of this is true and it's "Zombie stats", like @Lucibee said.

 

[Simone]

One thing puzzled me. If there are supposedly 250,000 with ME/CFS in Australia and 1 million in the US, which has a population 13 times more, something doesn't add up.

We use the prevalence estimate from the ICC Primer, which is 0.4-1.0%. 1% of the Australian population (24 million) is around 240,000. At the end of the day, we are all just giving a best guess. Until we get decent epidemiological data, that’s all we can do.

 

[Amw66]

I had thought Australian stats may have been more " solid" as diagnosis may be picked up / noted due to similarities with "Q" fever?

 

[oldtimer]

We use the prevalence estimate from the ICC Primer, which is 0.4-1.0%. 1% of the Australian population (24 million) is around 240,000. At the end of the day, we are all just giving a best guess. Until we get decent epidemiological data, that’s all we can do.

Thanks. Using that criterion, given the US population is around 326 million, that would be a prevalence of 3.26 million, not one million as the interviewer said.

 

[Melanie]

If there are supposedly 250,000 with ME/CFS in Australia and 1 million in the US, which has a population 13 times more, something doesn't add up.

IOM report stated 836,000 to 2.5 million. http://www.nationalacademies.org/hmd/~/media/Files/Report Files/2015/MECFS/MECFS_ReportBrief.pdf

1 Million seemed to be a "safe" number, I guess.

I have also seen the number of 4 million but I don't know what is backing that up.

 

[Melanie]

We use the prevalence estimate from the ICC Primer, which is 0.4-1.0%. 1% of the Australian population (24 million) is around 240,000. At the end of the day, we are all just giving a best guess. Until we get decent epidemiological data, that’s all we can do.

Here is one of the places I have seen it stated as possibly 4 million in the US. "Roughly 17 million people worldwide (1 million to 4 million in the United States) have ME/CFS." http://stanmed.stanford.edu/2014fall/immune-system-disruption.html

IOM report stated 836,000 to 2.5 million. http://www.nationalacademies.org/hmd/~/media/Files/Report Files/2015/MECFS/MECFS_ReportBrief.pdf

 

[Melanie]

@oldtimer I found the 4 million number and have seen it elsewhere. Here is one of the places I have seen it stated as possibly 4 million in the US. "Roughly 17 million people worldwide (1 million to 4 million in the United States) have ME/CFS." http://stanmed.stanford.edu/2014fall/immune-system-disruption.html

 

[Barry]

One thing puzzled me. If there are supposedly 250,000 with ME/CFS in Australia and 1 million in the US, which has a population 13 times more, something doesn't add up.

I think it just illustrates how desperately we need much more high quality research.

 

[AndyPandy]

Many years ago in the days before we used computers I worked for an organisation where monthly stats were considered to be super important indicators of performance.

One office regularly boosted their stats by multiplying the actual figures by the number 13 - which was the number of the bus stop outside their office.

Always makes me smile. And always makes me wary of how numbers of anything (including ME sufferers) are calculated.

 

[Webdog]

From the 2006 Jason et al. paper cited by the IOM report:

The CDC currently estimates there are up to 900,000 Americans with CFS and another 2.5 million with CFS-like illness.

https://www.researchgate.net/profil...f6823bccb000000/The-Face-of-CFS-in-the-US.pdf

Whatever "CFS-like illness" means (seems to mean they either don't meet Fukuda or they didn't have a medical examination, but unclear), that's apparently where the high end 2.5 million number comes from.