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

Yes, Andrew Lloyd would love nothing more than for the existing guidelines (which he co-authored) to remain (despite the strong criticism from patients) and for them to be used to educate GPs about how to diagnose and treat ME/CFS. Why? Because the existing guidelines use Fukuda for diagnosis, and recommend GET/CBT. His research also uses Fukuda (his clinic doesn’t use any criteria. A diagnosis of “chronic fatigue syndrome” from a GP is good enough for him, and we know how accurate they are!), and his paradigm (both in his clinic and research) is based around GET/CBT. Can’t see any conflict of interest there at all!

ETA: Andrew Lloyd also has online education program which his clinic has developed, which is based on his clinic’s approach to treatment. I’m sure that doesn’t at all factor into his thinking that we should focus on GP education rather than updating the guidelines.

 

New article accompanying the episode, from Jen Temm, mother of 15 year old Luke. “My son hasn’t left the house in a year”.

https://www.sbs.com.au/news/insight/article/2018/10/16/my-son-hasnt-left-house-year

 

I see this is also linked to:

https://www.sbs.com.au/news/insight...=inbody:my-son-hasnt-left-the-house-in-a-year

Which show how little you know about the condition you are spouting medical recommendations for.

 

"if"

 

this logic becomes more convoluted, when you learn that Nathan Butler often applies amateur diagnoses of 'conversion disorder'.
[from https://meaustralia.net/2018/10/15/insight-on-chronic-fatigue-syndrome-andrews-experience/]

is Nathan Butler suggesting that ALL chronic health conditions are psychosomatic, and/or identical, and can be managed through increased exercise and positive thoughts ?

i wish, so very much, that Australian 'exercise physiologists' were subject to the same professional standards as other allied health professionals. so that patients could report the severe physical harm he (and his team) have caused to thousands of people with ME.

 

Feedback from family and friends who watched was generally positive. They thought that Lloyd and Butler didn't come across well and that their arguments were not at all persuasive.

On reflection today, I thought that the host of the show seemed to be fairly well-briefed judging from some of the questions she asked (eg, she prompted Dr Donohue to comment on the rarity of full recovery). I gather that Emerge and @Simone may have had a lot to do with briefing the producers of the show. If that was the case, you did a great job and deserve our thanks!

 

Anyone else afraid to watch this? I'm about to visit relatives who might have watched it (and they are not the most supportive...)

 

it highlights the severity of the disease. plenty of emotional impact.

some cringeful comments from the usual suspects - Andrew Lloyd (alleged ME specialist) and Nathan Butler (exercise physiologist & pseudo psychologist).

four guests on stage - two are recovered elite athletes, one bloke with severe ME, one lass with moderate ME. Ketra appeared by video link, from her nursing home.
probably too much emphasis on the two athletes who recovered, vs the 95% who never recover.

in the studio audience, were Dr Mark Donohue with some excellent comments, several parents of children with ME who made some excellent comments, Sonya MG & Don Staines who mentioned their research, and a few others with quality responses.

what are the cognitive biases of your relatives ? if you watch it with them, suggest they observe the facial expressions and body language as the ME-deniers speak.

 

The bias is they trust authority over what I have to say.

 

latest video/article from Insight:
Can exercise help manage the symptoms of chronic fatigue syndrome?
Exercise physiologist, Nathan Butler, believes Graded Exercise Therapy if done correctly can enable a CFS sufferer to do more, not less, without worsening symptoms

https://www.sbs.com.au/news/insight...help-manage-symptoms-chronic-fatigue-syndrome