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Videos of UK 2008 conference for doctors on CFS - organised by CBT School of Thought

Discussion in 'Action Alerts and Advocacy' started by Dolphin, Jan 28, 2010.

  1. Dolphin

    Dolphin Senior Member

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  2. CBS

    CBS Senior Member

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    Tom,

    Thanks for this post. Peter White's talk was interesting in that at several points he talks about research which points to the potential value of sub-grouping of CFS patients and the clear differences in what I would characterize as chronically fatigued patients versus Chronic Fatigue Syndrome patients (according to PW, no such thing as an ME patient today) and then he ends with a statement that CFS is a heterogeneous disorder. He implies that all patients should be given the same advice that graded exercise is a safe treatment and that providers should avoid giving the impression that CFS is chronically debilitating. It just seemed odd for him to have drawn these conclusions and arrived at his recommendations based the evidence he presented.
     
  3. Dolphin

    Dolphin Senior Member

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    Exactly. I made the same point in a letter that was published in the ME Association magazine (I might get to post it later - don't have access to all my E-mails at the moment). Peter White replied to my letter but didn't "apologise" or change his mind.

    He really only has one approach (gradually getting back to normal/behaving like normal), which he loves and thinks is suitable for all with CFS and he defends to the hilt. He never gives any warnings about its safety.

    He loves the NICE guidelines which deny everything except basic testing to rule other things out, and basically only allow patients try Graded Exercise Therapy (GET) and CBT based on GET.
     
  4. Robin

    Robin Guest

    There's a thread somewhere about that kind of cognitive dissonance. He did a study on whether or not exercise phobia causes CFS and found it does not. I think with some (not all) older researchers and doctors it's tough to re-examine the paradigms they've created, even when their own research points in another direction. He's been studying CFS for years, and when he complains about the complexity of that Canadian Criteria yet totally misses the gold standard of CFS: PEM. (sigh.) His generation needs to retire and let a fresh set of minds take over.

    Herein lies his problem: "the diagnostic tools we use influence our patients and influence prognosis." This is such BS. I remember my PCP telling me I would be fine in year or two and I was crushed when that didn't happen. :( How many stories have we heard of people who were told it's "stress" and are still sick years later? I would love to see research that correlates clinical expectation and prognosis with objective measures, with incremental follow up.
     
  5. CBS

    CBS Senior Member

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    I am sure that there are more than a few docs I have seen in the past who think their prognosis was spot on (and were therefore reinforced in their erroneous thinking) because I never returned. The truth being that their advice was either ineffective (I tried it and it didn't work or it made things worse) or it was transparently BS. To this day those same doctors continue to have 'marked success' with all of their patients that do not return.
     
  6. Something that is easily missed here, is these speakers are talking at the Royal Society of Medicine.
    Think about it for a second as it's easy to spot the Wessely School and assume they are in their domain, but they arent.

    Not one immunologist, neurologist.... all Psychiatrists at the RSOM.

    http://www.rsm.ac.uk/academ/video.php

    Incrediblly bad inditement of my country's medical profession who cause so much harm to patients and their families and partners.
     

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