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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Edited video of Wessely/White etc on youtube - anyone have the original?

Discussion in 'Action Alerts and Advocacy' started by Esther12, May 23, 2010.

  1. Esther12

    Esther12 Senior Member

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  2. Dolphin

    Dolphin Senior Member

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    They are from the RSM conference on CFS, April 2008. They can be watched at:
    http://www.rsm.ac.uk/chronicfatigue08/index.php

    I tend to read papers more than watch videos so can't comment on the Simon Wessely one but I know that Peter White was quite misleading with quite a lot of what he said including statistics/research findings he presented.

    On that page, in case anyone hasn't seen it, is a lecture http://rsm.mediaondemand.net/player.aspx?EventID=1337 by Alastair Miller, the new Principal Medical Advisor of Action for ME.
     
  3. flybro

    flybro Senior Member

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    pluto
    Cheers Esther and Tom

    great links
     
  4. Esther12

    Esther12 Senior Member

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    Excellent. Thanks a lot for that.

    I like these sorts of things because you can hear their tone and expression. Their lovely little jokes about CFS patients are normally such fun too.

    I wonder if there's ever been a study on the personality types of those drawn to CFS research?
     
    taniaaust1 likes this.
  5. Esther12

    Esther12 Senior Member

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    The link above no longer works, but Mark posted links to the talks which are still available here: http://forums.phoenixrising.me/index.php?threads/phoenix-rising-video-library.4980/#post-110739

    I've transcribed the end of White's talk, which just struck me as interesting in relation to spin post-PACE:

    http://rsm.mediaondemand.net/player.aspx?EventID=1291

    Charles Shepherd summarised the whole talk here:

    http://meagenda.wordpress.com/2008/05/15/mea-summary-of-prof-peter-d-whites-rsm-presentation/

    ME Agenda did a transcript of the first part of the talk here: http://meagenda.wordpress.com/2009/...iscouraging-rsm-conference-from-using-icd-10/

    White's slides used to be online here: http://www.roysocmed.ac.uk/chronicfatigue08/white.pdf but I can't find them anywhere now.
     
    Last edited: May 9, 2014
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  6. Esther12

    Esther12 Senior Member

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    The full text for the paper on labelling cited by White is available, I know Wessely likes this paper too, and has passed it on to journalists to illustrate the danger of the 'ME' label. To me, it seems that they don't really address the possibility that those patients who believe that there fatigue is less serious/a result of identifiable and hopefully transitory psychosocial factors may be more likely to end up with the CFS label... and that these illness beliefs might serve to reflect reality rather than create it.

    http://fampra.oxfordjournals.org/co...eec0ec08e043a8b23c40f779&keytype2=tf_ipsecsha
     
  7. A.B.

    A.B. Senior Member

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    This doesn't sound like patients were randomly assigned either a CFS or ME label. The simple explanation would be that the more severely ill are more likely to receive a diagnosis of ME than CFS. As usual, the claims by the BPS crowd evaporate upon closer inspection. It looks like they did the following:

    1. Arbitrarily label several conditions as "fatigue syndrome".
    2. Look for differences between these conditions.
    3. Declare that any differences found are due to biopsychosocial factors, and not due to pathology.
     
    Last edited: May 9, 2014
  8. biophile

    biophile Places I'd rather be.

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    In addition to what A.B. said, I have doubts over the accuracy of GP records.

    Once or twice I saw CFS and [depression] used interchangeably on my records, although that may have been a sloppy oversight since some form of depression was a temporary secondary diagnosis, but a variation of PVFS was the first and primary diagnosis and the most commonly used term over time. But it shows how loosely terms are used by GPs.

    Similarly, I doubt my records have accurately captured all the significant symptoms over the years. The CCC and ICC has a good description of symptoms, but from what I remember, medical records are rarely as descriptive. I care more about accurate characterization of symptoms than diagnostic labels.

    Re this study, I wonder what 'biopsychosocial' factors are associated with spinning/promoting results beyond the evidence?
     
    Last edited: May 9, 2014
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  9. user9876

    user9876 Senior Member

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    It may also be a function of the GPs attitudes. The label a GP uses may indicate the treatment options considered and how they act with a patient. This intern may reflect on the likelihood of a patient returning to see the GP and hence whether the patient is perceived in the notes to have a continuing problem.
     
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  10. Cheshire

    Cheshire Senior Member

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    How could that be??? That's just total nonsense! Were you diagnosed with both or did the doctors mixed up both conditions as being the same?
     
  11. biophile

    biophile Places I'd rather be.

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    If I recall, I may have been diagnosed with both at one stage (CFS primary, depression or dysthymia secondary), but at least once when going through some of the records (not his own records, but ones he wrote for me for other purposes), I saw some variant of depression used instead. I don't like to complain too much because he was generally helpful, but he did have an obvious biopsychosocial stance and viewed CFS and depression with heavy overlap and probably just made a mistake. I doubt busy GPs pay too much attention to details if they think the symptoms are ambiguous or non-specific.
     
  12. Esther12

    Esther12 Senior Member

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    Not in the paper... it does rather sound like that when White says:

    Surely it's not that White would try to present his work as more valuable than it is in presentations though!?!
     
    Last edited: May 9, 2014
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  13. biophile

    biophile Places I'd rather be.

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    Apart from the possibilities mentioned above ...

    Seeing how common "chronic fatigue" is, and if diagnoses of ME or CFS are handed out arbitrarily, there is bound to be misdiagnoses. ME is less common than CFS, and telling someone with idiopathic fatigue that they have "ME" may be as inappropriate as telling someone that they have MS. Telling patients they have a serious organic disease may influence some of them to seek more consultations and expect medical care irrespective of what illness they have. While telling patients they have a (psychosomatic or idiopathic) fatigue syndrome may influence them to decrease consultations and report less problems after reading all the dismissive psychobabble on the internet.

    Illness duration was simply derived from the "last recorded fatigue symptom".
    I haven't seen a doctor and reported a "fatigue symptom" for a while, so I must be cured? Sweet.
     
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  14. biophile

    biophile Places I'd rather be.

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    In relation to what I said about a psychobabble diagnosis affecting patients reporting of symptoms:

    http://scholar.oxy.edu/sociology_student/5/
     
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  15. taniaaust1

    taniaaust1

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    Sth Australia
    umm so I wonder if Peter White would also think its better to give an incurable cancer patient the message of GET rather then tell them they are incurable and have cancer. I think not. His logic makes no sense at all to me.
     
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