Episode of Australian current affairs program, “Insight”, on ME/CFS on October 16, 2018

Simone

Simone

Senior Member (Voting Rights)
There will be an episode of the Australian current affairs program, “Insight”, on ME/CFS on October 16. Insight is a panel discussion program which tends to try to highlight all sides of an issue. As such, the guests on the ME/CFS episode range from athletes who claim to have recovered, a severely ill woman who is bedbound and living in a nursing home, biomedical researchers and GET proponents. The program runs for about an hour.

You can watch the trailer to the program:

Their website provides an introduction to the guests on the program, and a powerful video of Ketra (bedbound woman living in a nursing home).

https://www.sbs.com.au/news/insight/tvepisode/chronic-fatigue-syndrome
 
The program is scaring us too. There is huge potential for this to go badly, especially given the strong GET proponent who is on the program. There are some biomedical researchers (Sonya Marshall-Gradisnik, Chris Armstrong), as well as a GP (Mark Donohoe, featured in the trailer) who is good. We can only cross our fingers and hope. We are launching a social media campaign, and hope you will support us (we will be live tweeting the program from @MEActNetAu). So far, the sense we are getting is that it will be more good than bad, but we won’t know until it airs.

I’ll post the link to the program once it’s available online.
 
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I hope it is okay. The problem is when journalists don't quite understand the issues. For example if they let the claim there is evidence for GET slide through, putting subjective self reports in nonblinded studies on the same level as randomised controlled trials, when really there is an absence of objective evidence that it leads to better health in patients.
 
Given this account from a participant on the show, I'm not holding out much hope that it will provide a balanced perspective:

‘Insight’ on chronic fatigue syndrome: Andrew’s experience
Andrew Bretherton was working as a personal trainer, kung fu and basketball coach and finishing a psychology and sports science degree when he became ill. He is now mostly housebound due to ME.


He tried graded exercise therapy at a Melbourne clinic where he was blamed for his illness, told he was averse to exercise and had the wrong type of personality.


Andrew wanted to go on SBS’ Insight to show what it’s like for the average patient.
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The owner of the GET/CBT clinic mentioned in the quote above was on the show and it appears that his behaviour was quite out of line. It's well worth reading the whole article:

https://meaustralia.net/2018/10/15/...hu-x6Tvi5IxlH7jH9K9DxoTyYy43Zh_Ggyryi1bc7fxg4
 
Merged thread

I’m 33 and I live in a dementia ward, which is exactly as bad as you imagine.But I’m not here because I have dementia. I’m here because it is the quietest (except when the residents are yelling), least perfume-saturated ward. I need my environment to be quiet and chemical free because I have Multiple Chemical Sensitivities (MCS) and ME (Myalgic Encephalomyelitis) sometimes called Chronic Fatigue Syndrome (CFS or ME/CFS)
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https://www.smh.com.au/lifestyle/he...ged-care-for-eight-years-20181016-p509ul.html
 
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Andy said:
Have you watched it yet Simone?
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No. I ended up physically and emotionally drained from dealing with NHMRC committee and preparing for Insight tonight, so I decided to take a mental health break. I watched old episodes of Doctor Who and ate ice cream! I had the CEO of Emerge Australia texting me updates on the program, and I texted her updates on the Doctor and Rose. :laugh:
 
Art Vandelay said:
The consensus around the traps seems to be "that could have been a lot worse" (I agree). From the looks of it they edited out some of the GET/CBT nonsense.
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That’s the sense I’m getting from people too. Mostly okay, with some GET rubbish, and too much emphasis on people having recovered. Could have been so much worse. It seems that the worst stuff was edited out, thankfully.
 
Simone said:
That’s the sense I’m getting from people too. Mostly okay, with some GET rubbish, and too much emphasis on people having recovered. Could have been so much worse. It seems that the worst stuff was edited out, thankfully.
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At least Dr Mark Donohoe was able to make the point that full recovery is very rare and that often people who claim that they've recovered are still quite ill by the standards of a healthy person.
 
"in the last 15 years there aren't many credible advances in the [ME/CFS] research" says alleged ME/cfs expert. :banghead::banghead::banghead::banghead::banghead::banghead:

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Australian TV - SBS Insight - 16 Oct 2018

https://www.sbs.com.au/ondemand/video/1334946883764/insight-chronic-fatigue-syndrome

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Excerpt at time marker: 41:18 minutes

Jenny Brock (presenter): "Andrew, if the [australian medical] guidelines are 15 years old, is it time for them to change ?"

Andrew Lloyd (clinician and 'scientist'): "To be honest Jenny, my feelings about that are mixed. It's a sad statement, but in that 15 years there aren't many credible advances in the research. So you could argue the money might be better spent, rather than revisiting the guidelines, actually just educating general practitioners, and for that matter specialists and allied health professionals, about what we do know about the fundamentals of how to make this diagnosis, and then, if the evidence is strong enough, for Cognitive Behavioural Therapy or Graded Exercise Therapy, or any other form of intervention, we could educate the medical community about how to deliver those."

[Lloyd co-wrote the existing guidelines. He is involved with a 'fatigue clinic' that encourages increased exercise. A few years previously he used medical research funds earmarked for ME/CFS, to create an online education tool for doctors. That is, instead of doing medical research, the money was used to 'research' whether an online education tool would help educate doctors.]
 
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