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

Discussion in 'General ME/CFS News' started by Simone, Jul 18, 2018.

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  1. Simone

    Simone Senior Member (Voting Rights)

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    Simone, Jul 18, 2018
    #1
    Inara, ukxmrv, Barry and 22 others like this.
  2. Trish

    Trish Moderator Staff Member

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    Starts well with some good points from Dr Heidi Nicholl, but plays down the level of disability of the ME sufferers interviewed, and disappointing in quoting Dr Lloyd, who insists CBT/GET are evidence based. And why do journalists insist on finishing an article with a 'positive story' and a quote from someone who seems to have very mild ME "I believe there is hope and there is recovery for anyone who wants to believe in it too." Oh dear.

    I hope the broadcast is better.
     
    Trish, Jul 18, 2018
    #2
    Inara, ahimsa, ukxmrv and 25 others like this.
  3. Sasha

    Sasha Senior Member (Voting Rights)

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    Is there time for Australians to do some rapid advocacy work there?
     
    Sasha, Jul 18, 2018
    #3
    Inara, Barry, Melanie and 2 others like this.
  4. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    I guess Dr Lloyd forgot to tell them about the study that he did that had a null result.
     
    Snow Leopard, Jul 18, 2018
    #4
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  5. MeSci

    MeSci Senior Member (Voting Rights)

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    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?
     
    MeSci, Jul 18, 2018
    #5
    Inara, Zombie Lurker, Melanie and 4 others like this.
  6. NelliePledge

    NelliePledge Moderator Staff Member

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    i hope the report turns out ok - all the best Aussies

    on this article its like the BBC coverage earlier this year the good thing is to have won on the headline and Heidi's comments come first
    also Lloyd has had to admit it does harm people - hopefully that will make some people think

    quote from surfer woman is not helpful - online a lot of folks wont get past headline and first paragraph - but in a tv report it will have more impact
     
    NelliePledge, Jul 18, 2018
    #6
    Inara, Dolphin, Trish and 3 others like this.
  7. Hutan

    Hutan Moderator Staff Member

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    You can login to the ABC site, from overseas. You have to register but it's straightforward. The programme should be viewable from this site.
    http://www.abc.net.au/7.30/

    Facebook link, for ABC 7.30, has a post on the ME/CFS programme
    https://www.facebook.com/ABC730/?re...VOprdEXDNmQBE4zU06a3PJ-yWLPUs6IWVpVzO2z9MKM78

    Twitter, has a tweet about the ME/CFS programme @abc730
    https://twitter.com/abc730?ref_src=...le:abc730&ref_url=http://www.abc.net.au/7.30/
     
    Hutan, Jul 18, 2018
    #7
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  8. Simone

    Simone Senior Member (Voting Rights)

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    Simone, Jul 18, 2018
    #8
    Inara, ukxmrv, Skycloud and 5 others like this.
  9. Simone

    Simone Senior Member (Voting Rights)

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    Last edited by a moderator: Jul 18, 2018
    Simone, Jul 18, 2018
    #9
    Inara, Melanie, Wonko and 1 other person like this.
  10. Melanie

    Melanie Senior Member (Voting Rights)

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    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.
     
    Last edited: Jul 18, 2018
    Melanie, Jul 18, 2018
    #10
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  11. Webdog

    Webdog Senior Member (Voting Rights)

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    Webdog, Jul 18, 2018
    #11
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  12. Hutan

    Hutan Moderator Staff Member

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    It wasn't terrible. Most people referred to the illness as 'ME/CFS', or 'chronic fatigue syndrome, now known as MECFS'.

    Dr Heidi Nicoll was good, she is an asset for advocacy.

    I think the journalists involved were trying to be sympathetic. But a brief reference to US government agencies withdrawing recommendations for GET spoken by the narrator over images of test tubes is so easily missed, while Lloyd, the white male expert talking on screen in a kindly and reasonable manner, has a lot more impact when he suggests that the majority view is on the side of GET and that his work with patients confirms it. I think we have to get engaging people with white coats on and machines that go ping in the background talking about the biological anomalies they find to counter the BPS narrative.

    The clip from Unrest showing many people around the world, normally invisible because they are confined to their beds, was good.

    Thanks to Jamie and her family for being so brave to represent people affected by ME/CFS. I don't think I could do it; it is such a difficult illness to show to the world. (If you look happy, you aren't really sick. If you look miserable, you just aren't thinking positively enough to recover.) The choice to show Jamie using her scarce energy to go out and get her nails painted, happily chatting with the nail technician, though was, I think, an unfortunate one.

    Layne Beachley's comment in the article about recovery being available to those who believe was very harmful. Thankfully that did not appear in the tv programme and actually the segment about Layne was really quite good, showing that it can affect even the physically active. Layne is well known; having her say that it is a debilitating illness may have helped to give some people pause for thought.

    Unfortunately though, I'm not sure how we can really convince the general public of the reality of our illness without a clear biomarker.
     
    Last edited: Jul 19, 2018
    Hutan, Jul 19, 2018
    #12
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  13. oldtimer

    oldtimer Senior Member (Voting Rights)

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    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
     
    Last edited: Jul 19, 2018
    oldtimer, Jul 19, 2018
    #13
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  14. Hutan

    Hutan Moderator Staff Member

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    I think this comment was in relation to the evidence for GET. Lloyd is saying that things are not black and white, and the criticism (our criticism) of the evidence for GET is that the outcomes are subjective and open to manipulation (by researchers). To which Lloyd effectively replies 'well, there is no physical sign, so what can we do?' and waves the criticism away.

    But yes, the way the comment is edited, I think that that meaning is lost and it is easy to get the feeling that it is the patients who are doing the manipulating.

    Yes, I thought 'old-fashioned' was a poor choice of word. I think it was repeated, it seemed as if the word had been consciously chosen. 'Dis-credited' would have been a stronger, more accurate word to use.
     
    Last edited: Jul 19, 2018
    Hutan, Jul 19, 2018
    #14
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  15. oldtimer

    oldtimer Senior Member (Voting Rights)

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    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.
     
    oldtimer, Jul 19, 2018
    #15
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  16. BruceInOz

    BruceInOz Senior Member (Voting Rights)

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    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."
     
    BruceInOz, Jul 19, 2018
    #16
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  17. MEMarge

    MEMarge Senior Member (Voting Rights)

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    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.
     
    MEMarge, Jul 19, 2018
    #17
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  18. ahimsa

    ahimsa Senior Member (Voting Rights)

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    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!
     
    ahimsa, Jul 22, 2018
    #18
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  19. BruceInOz

    BruceInOz Senior Member (Voting Rights)

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    BruceInOz, Jul 23, 2018
    #19
  20. ahimsa

    ahimsa Senior Member (Voting Rights)

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    I'm in the USA and I was able to watch the video. I didn't watch the whole thing, though.
     
    ahimsa, Jul 23, 2018
    #20
    BruceInOz and MEMarge like this.
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