Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Gresham College lecture

Discussion in 'General ME/CFS News' started by rosamary, May 5, 2015.

  1. rosamary

    rosamary Senior Member

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    Valentijn and mango like this.
  2. *GG*

    *GG* Senior Member

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    No video?

    GG
     
  3. Esther12

    Esther12 Senior Member

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    Miller is such a turd.

    The promotion of CBT and GET is getting more vague and evasive. Wonder what the new BACME guide will be like.

     
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  4. Snowdrop

    Snowdrop Rebel without a biscuit

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    If the efficacy of CBT/GET is as described it is not very robust--so why continue to push so hard for it's use?
    Well, we know the answer. But the general practitioner or even specialist does not have a clue.
    At least they've been upgraded to controversial.
     
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  5. rosamary

    rosamary Senior Member

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    'However, CBT is extensively and beneficially employed in many other chronic conditions such as cancer and rheumatoid arthritis, so there is nothing illogical in using it for CFS/ME. It does not work for everyone but it is unlikely to cause any harm (White at al. Lancet 2011; vol 377; issue 9768) and is worth trying.'

    Really scraping the bottom of the barrel there, I feel.

    'unlikely to cause any harm' ?????

    Discovering that it hasn't done any good is hardly likely to improve matters for a patient. Especially if they are encouraged to believe that the whole problem is their own fault.

    All very wishy-washy.
     
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  6. Esther12

    Esther12 Senior Member

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    With Miller, I can find it hard to work out whether he thinks patients are really stupid, or if he's just really stupid.

    Similar stuff from his slides:


    If we removed all the perpetuating factors, shouldn't that mean that the illness stopped?

    He had three slides on XMRV for some reason.

    He does mention "Lack of blinding" on PACE.

    Looks like the 'transcript' was rather lacking in a lot of details.
     
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  7. user9876

    user9876 Senior Member

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    CBT and Get are controversial because patient surveys suggest they cause harm and trial have a dodgy methodology and even then the results are heavily spun. The methodology is dodgy because they ask patients how they feel, tell them they should feel differently, ask patients again how they feel and get a slightly different response.

    I tend to think he has taken sides in a debate that he doesn't understand because its framed by White rather than listening to patients who want effective treatments and research leading to them. I also wonder if he has actually read and thought about the trial evidence and looked at the criticisms of PACE. Perhaps he is someone who has just emotionally bought into one view and won't change unless it is so obvious that he is wrong its too embarrassing to keep with his opinions.

    What really concerns me is Drs like him repeating a very negative message about ME and why Doctors feel bitter when their work is questioned rather than looking at the evidence and likely research paths and ways forward. Its very negative to look backwards in this way and not at all helpful. So why so much on XMRV - I see its worth talking about the lack of evidence of a single pathogen. But then why not spend the time on studies which suggest a route forward with useful evidence.
     
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  8. Valentijn

    Valentijn Senior Member

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    I think the bigger problem is that comparing CBT-for-ME with CBT for other diseases is deceitful to the point of being a bald-faced lie. The CBT practiced in other diseases is used to help patients cope with being ill. The CBT being sold for use upon ME patients is focused at brainwashing them into rejecting their illness and discouraging them from attempting to cope with it.

    These completely different treatments should not be permitted to have the same label.
     
    Last edited: May 5, 2015
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  9. user9876

    user9876 Senior Member

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    Looking through the slides he has obviously heard of the IoM report and name but he doesn't seem to have mentioned any of their material.

    Also ignoring Rituximab, recent brain scan results and exertion testing, Lipkins cytokine work etc

    It feels like a talk he has been doing the rounds with for a few years and that he is not up to date with current research of at least not confident in talking about it. (although the cynic in me would suggest that when something doesn't tie in with his view he is putting his fingers in his ears and singing la la la so that he doesn't hear). Looking at the slides my guess is he believes ME is a form of depression.

    Also I noted the Action for ME slide so I wonder if he is passing this off as their opinion.

    Its certainly not a talk thats going to inform and inspire doctors to treat and research ME.
     
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  10. Bob

    Bob

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    Yes, also CBT for ME is intended to 'reverse' the illness itself, supposedly leading to 'recovery', whereas CBT for cancer is not intended to 'reverse' the tumour. If such a program of CBT was promoted for cancer, severe action would be taken against those who promoted it. But for ME, it's OK to promote such claims, apparently, despite the lack of evidence.
     
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  11. rosamary

    rosamary Senior Member

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    Does he really care?

    'Alastair retired from Liverpool in 2014 to spend more time in the mountains but continues to work one day a week in London at JRCPTB and one day a week in acute medicine for Northumbria Acute NHS Trust'

    To be honest, I think he needs A LOT MORE TIME IN THE MOUNTAINS.

    I have the impression that he is very closely connected with White, Wessely etc.

    Shame he is the able to spread the CBT sickness via his one day's work at the
    Joint Royal Colleges of Physicians Training Board

    http://www.jrcptb.org.uk/


    Hopefully, he will do some volunteering in the Himalayas permanently and leave this type of work to someone less 'establishment' suctioned.
     
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  12. Snow Leopard

    Snow Leopard Hibernating

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    The biggest myth is the claim that there has been a 'huge research effort'...
     
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  13. Cheshire

    Cheshire Senior Member

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    The video is online...
     
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  14. eafw

    eafw Senior Member

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  15. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    unfortunately they do use CBT in cancer/similar, to supposedly "cure" the fatigue of such diseases, and to pretend to "boost" the immune system through "positive thinking" which is for some inane reason (read: really bad methods and wishful thinking) thought to improve chance of survival.

    It's not only us. It's really dismal critical thinking skills, terrible methods, and a failed peer review process.

    The difference in us is that we have few people to stand up for us, and virtually no one to say "how silly; that's an actual important disease and can't be cured by happy thoughts and unicorns".
     
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