“Potentially harmful and old-fashioned chronic fatigue treatments under review” ABC Australia article and TV program

This article has just been posted to the ABC (Australia) website, ahead of a story on the current affairs show, 7.30, on the same network tonight. Based on the article, we are on tenter hooks about the story tonight.

http://www.abc.net.au/news/2018-07-18/chronic-fatigue-treatments-set-for-review/10007356

 

Is there time for Australians to do some rapid advocacy work there?

 

I guess Dr Lloyd forgot to tell them about the study that he did that had a null result.

 

What about the quote "one in two can experience mental health problems as a result of their fatigue symptoms"?

Where on earth did that come from?

 

The story is now available on the ABC website.

http://www.abc.net.au/7.30/committee-reviews-potentially-harmful-and-old/10010408

 

Merged thread

This story aired on Australian TV tonight. It was acccompanied by a written article which had been published earlier in the day

http://www.abc.net.au/7.30/committee-reviews-potentially-harmful-and-old/10010408

 

Cringeworthy watching.

I keep saying that Australia, be it the government, healthcare, media, or the patients themselves, NEED TO STOP SAYING CHRONIC FATIGUE! Call it by its gross name, CHRONIC FATIGUE SYNDROME. And no, no one understands that it is actually CFS and that is just what that criminal "Dr." Lloyd is counting on.

The surfer, as usual, had Overtraining Syndrome. But because everyone uses the symptom CF for everything, it's no wonder she thinks she had CFS and is managing it so well, still surfing and all that.

 

The US CDC?

"As many as half of patients with ME/CFS develop depression at some time during the course of their illness."

https://www.cdc.gov/me-cfs/healthca...-mecfs/treating-most-disruptive-symptoms.html

 

Writing the next day, I'm depending on the impression I was left with (and a couple of hastily scribbled quotes) rather than any planned analysis.

I thought the 9 minute segment tried to say too many things in a short time and would have left viewers with the impression that GET/CBT was still probably a legitimate treatment for the majority of patients.

Why did Dr Nicholl describe GET/CBT with the benign term "old-fashioned"? What has being old fashioned got to do with effectiveness? I presume the snippet where she said that an old, flawed study showed that graded exercise was shown to have some kind of benefit was edited because that was it: no further explanation at all. That was followed by a very short comment from a patient who wasn't helped, and that was immediately followed by quite a long segment with Dr Lloyd in his clinic.

Lloyd seemed to equate the fatigue of cancer and post-infective fatigue with that of ME/CFS, all of which he treats in his fatigue clinic. He went on to say that the bulk of evidence is in favour of GET and only a minority is against, and that in general GET is beneficial if sensibly applied, which is no doubt what he will put to the government advisory council. I thought his comment that because there are no tests for ME/CFS, doctors have to rely on what patients tell them, and "that, therefore, is at least perceived to be open to manipulation", was not encouraging. Like a lot of the statements made during the whole segment, it was left hanging with no explanation. I don't know what he was trying to say; perhaps he was referring to fraudulent claiming of welfare benefits.

Most of the facebook comments expressed gratitude to the ABC for presenting something - anything - but were annoyed that Lloyd was given such prominence.

I suppose it's a good thing that ME/CFS got some publicity but shame on the ABC for not being more balanced. Why weren't Uni of Melbourne or even the Griffith researchers interviewed? My mind isn't up to writing a proper review - and would it be worth it? The whole thing is best forgotten, imho.

Edit: except for Jaime who did a great job

 

Thanks for the explanation about Lloyd's comment.

I also thought the word old-fashioned was planned ahead of time and wondered at the time what sort of political reason there might be for that. After 50 years I get a bit impatient with pussy-footing around.

 

I thought that "old fashioned" was a poor choice of wording. It completely failed to get the point across. A doctor from the University saying the balance of evidence is on the side of GET/CBT vs a patient rep saying old fashioned just didn't get the point across.

I realise they wanted a sound bite that had a good chance of being taken up but I would have prefered something like "The studies that show GET and CBT work for ME/CFS are so fundamentally flawed they could be easily adapted to show homeopathy works."

 

I believe there is HOPE, because of advances in medical research and the demise of PACE.

The "there is recovery for anyone who wants to believe in it" is RUBBISH/ whatever expletive you choose.

 

This youtube video is still photos with captions printed on them and some background music.

I'm pretty sure this video is not the news story that was mentioned earlier in this thread....but since the video has the same title I can understand the confusion.

I went to this link:

http://www.abc.net.au/7.30/committee-reviews-potentially-harmful-and-old/10010408

And noticed that if you scroll down it has a transcript. I usually prefer to read the transcript for news stories vs. watching a video so this works for me. Hope it is helpful for others!

 

For me, that link also has the real video of the story. Can you see the video from there or is it Australia only?

 

I'm in the USA and I was able to watch the video. I didn't watch the whole thing, though.