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

pteropus said:
"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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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. :bored:
 
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Simone said:
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
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I see this is also linked to:

https://www.sbs.com.au/news/insight...=inbody:my-son-hasnt-left-the-house-in-a-year
Exercise physiologist Nathan Butler said:
To me exercise and GET are an important part of managing ME/CFS as I don’t believe they are any different to other chronic health conditions.
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Which show how little you know about the condition you are spouting medical recommendations for.
 
Barry said:
Exercise physiologist Nathan Butler said:
To me exercise and GET are an important part of managing ME/CFS as I don’t believe they are any different to other chronic health conditions.

Which show how little you know about the condition you are spouting medical recommendations for.
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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!
 
Snow Leopard said:
Anyone else afraid to watch this? I'm about to visit relatives who might have watched it (and they are not the most supportive...)
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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.
 
Butler exposing his true motives and tactics:

https://meaustralia.net/2018/10/15/insight-on-chronic-fatigue-syndrome-andrews-experience/

What happened when the cameras weren’t rolling?
Hmm, the actions of the owner of the exercise clinic before and after the show were quite concerning. Before recording I was having a nice discussion with Professor Don Staines, Professor Sonya Marshall-Gradisnik and Jen (parent of a son with ME). The owner of the exercise clinic joined the group and we all went quiet. He introduced himself to the others and I replied “we’ve met” and that I did not want to shake his hand. He asked how I was going and that we needed to have a ‘talk’ before going on the show. I told him this was the first time he has asked about my care in over 12 months since being at his clinic (who have a weird policy of not checking up on patients “as it our responsibility to want to get better” — imagine saying that to a cancer patient) and that I had nothing to discuss with him.

After the show I was followed by him to ‘have a talk’ and I had made it very clear that I did not want to talk to him or have anything to do with him but he kept pressing, following and harassing me to talk to him until I agreed. He kept saying “why?”. Eventually I replied, “Let me put in words you’d understand: you’re now presenting as a DIMS” (“danger in me” from his dumb program). I was already so tired from the program so I just wanted him to go away (he was like a child that keeps saying mum repeatedly) so I asked him what he wanted to talk about. He said, “you know Andrew I have a family and a career and employees to support and what you said in there could jeopardise that”. I replied “that’s great mate, I have none of things because of you, I lost my job, I had to give up uni, and you get to still have to career I was working towards, I’ve lost partners to this illness and I’m not even sure I’d be able to help raise kids anymore”.

He then said that I was at fault for not going to the clinic anymore.

He asked how I would treat the illness then I pointed to Professor Don Staines, Professor Sonya Marshall-Gradisnik and Dr Chris Armstrong. I said “do some proper exercise science, you could offer stuff for ME patients but there’s no money in it for you as it’s mostly just functional testing and it would mean you’d have a record of deterioration (two day CPET, vo2 max, muscle tests, etc)”. He said it was unfounded, their research was proven or something it was at this point Chris stepped in, stood up for me and mentioned some research stuff.

Two days later a clinic employee joined ME/CFS Australia (facebook group) and criticised me and some of her former patients on the group page. Then I got an email from him. I told SBS what happened and to tell him to stay away.
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My sister in Australia just phoned me to tell me about the program (I'm in the UK). The parts that excited her were the biomedical researchers. She particularly picked up bits about genetics, mothers and daughters, more common in women, Calcium in cells, metabolism and brain studies. She was less interested in the bits about the patients, because she already knows what it's like from me and my daughter. She didn't even mention the recovery stories or the GET stuff.
 
Sly Saint said:
Exercise physiologist, Nathan Butler, believes Graded Exercise Therapy if done correctly can enable a CFS sufferer to do more, not less, without worsening symptoms
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Arrgh, that piece written by Nathan Butler is a such rubbish, so full of subtle spin and evidence of a constant revision of his message as the BPS theory looks ever shakier. I can't see a place to respond to his article.

In 2015, my doctor suggested I go to his clinic. I rang and found out that his clinic staff had no idea about VO2 max, 2 day CPET and the like. This is an exercise physiology clinic specialising in CFS. And I found out that Nathan was part of the PACE trial.

I'm pretty certain that most of those people who say they get better with the help of this clinic would have recovered on their own. For the rest of us, we can do without the patient blaming and moral superiority.
 
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