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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

Discussion in 'Latest ME/CFS Research' started by Sam Carter, Jan 31, 2013.

  1. Dolphin

    Dolphin Senior Member

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    Yes, in the paper referenced in the studies (Figure 1a):
    http://jpubhealth.oxfordjournals.org/content/21/3/255.full.pdf

     
  2. kaffiend

    kaffiend Senior Member

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    So they used the mean and SD of THIS distribution?! WTF?

    That looks like an exponential function. They should have log transformed the scores or used a non-parametric measure.
     
    Last edited: Nov 23, 2013
  3. user9876

    user9876 Senior Member

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    An exponential distribution is a better fit that a normal distribution which would have SD=mean. But still not a great fit around the tail. The median and percentiles show their error. The working age median was 100.
     
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  4. Graham

    Graham Senior Moment

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    The SF-36 scores are designed to measure a range of performance for the ill, so that data can vary quite a lot, depending on the specific illness. It is possible that they are closer to Normal distribution, but it is unlikely that any questionnaire like this could avoid being skewed.

    But they weren't designed to measure the range of normal health, so the results for healthy folk are clustered. As such you could set a boundary to represent "no longer meeting the normality of the illness" by using the scores of everyone with ME (not subjected to PACE's entry criteria, and including all those who have "recovered but need to exercise caution). That of course, would be high. You can't use it to measure a boundary for "normal function" because it wasn't designed to measure the variations of normal function.

    Although I have used the data from Bowling to "disprove" PACE, I don't think that Bowling's data is appropriate for an analysis of health.
     
  5. Dolphin

    Dolphin Senior Member

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    Nothing really new in this but just another example* of why information on proper recovery following GET is important: the model for GET suggests people should be able to recover to full functioning.

    (replying to Dr. Charles Shepherd)

    *from 2001 - I only just read it
     
  6. biophile

    biophile Places I'd rather be.

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    Yet in the 12 years since, White has still not produced any objective evidence that CFS patients are recovering physically. In the PACE Trial, the 6MWD scores were pathetic and suggest no such recovery in general (and they refuse to release 6MWD data for those who were classed as 'recovered', and they also refused to collect followup actigraph data, which we all know from previous studies, on a form of CBT that included GET, would have showed no improvement either).

    White's cited 1997 paper on GET did not show a correlation between improved strength/fitness and improved symptoms. As a group, those who reported subjective improvements did not improve their fitness either, so perhaps those who did improve their fitness generally had similar or even worse symptoms to baseline? They may have also had to sacrifice other activities in order to perform the prescribed exercises. The 2000 paper was not on GET.

    White claims in the above letter that "Yet we showed that supervised graded exercise therapy significantly improved both fitness and quadriceps strength." Even at face value this is only half correct, as the differences in quadriceps strength were not statistically significant. There were a total of 9 physiological measures and only two showed statistically significant improvements. Not to mention that it was on an Oxford criteria cohort where "we excluded patients who also had a current psychiatric disorder or symptomatic insomnia because of the separate effects of these conditions on fatigue".

    Black & McCully (2005) showed, albeit with a small sample, that increases in activity could be done at first but worsened symptoms and was unsustainable. That has certainly been my experience too and is common. Even with gradual resistance training, I could slightly improve strength but it always came crashing down eventually as cumulative post-exertional symptoms creeped up and caused a prolonged crash no matter how careful I was, there was no adaptation in that sense.

    I think the recent AfME survey suggested that the main difference between good and bad experiences with GET boiled down to pressure to increase activity. Those who were not pushed into increasing activity did not have as many problems. It appears that the safety of GET depends on not actually increasing activity levels (ironic given the name GET).

    So yeah, all in all, there is now some evidence of a glass ceiling effect in physical performance.
     
    Last edited: Dec 8, 2013
  7. Bob

    Bob

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    In future, if a cognitive-behavioural therapist ever says to anyone that CBT & GET can lead to 'recovery', should the patient interpret that as meaning that CBT & GET can lead to deterioration after treatment and severe disability? (Medicine seems very confusing these days!)
     
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  8. Dolphin

    Dolphin Senior Member

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    This comes to mind:

     
  9. Bob

    Bob

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    Humpty Dumpty science?
     
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  10. Snowdrop

    Snowdrop Senior Member

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    CBT school ~ well, they do think they can cobble any sort of nonsense together and call it Humpty Dumpty (science). :rolleyes:
    The people who do this are being flat out ridiculous and embarrassing themselves in the long run.
     
  11. Roy S

    Roy S former DC ME/CFS lobbyist

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    It's a shame that the people in the medical and psychological professions do not speak out more often and more strongly about this unscientific overpromotion.
     
    ... but getting back to the serious business of ridiculing the ridiculous in the rich tradition of folks like Lewis Carroll, Franz Kafka, and George Orwell...
     
     
    `But I don't want to go among mad people,' Alice remarked.
    `Oh, you can't help that,' said the Cat: `we're all mad here. I'm mad. You're mad.'
    `How do you know I'm mad?' said Alice.
    `You must be,' said the Cat, `or you wouldn't have come here.'
    Alice didn't think that proved it at all;
     
     
    http://www.cs.indiana.edu/metastuff/wonder/ch6.html
     
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  12. alex3619

    alex3619 Senior Member

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    I don't know if I have said this publicly yet (I don't recall) but in my book I distinguish between blame and responsibility. Most of the medical profession are not to blame for psychobabble. They are however responsible for it because its in their area, and they are not doing anything to stop it. Yet if they attack it here, why not everywhere? What happens to psychiatry, its mostly determined by babble? What happens to medical credibility? How can they justify treating patients if they acknowledge the "science" they are using is suspect? This is ruled by fear, uncertainty, dogma and authoritative fiat. Its not ruled by courage, compassion or logic.

    Having said that there are some psychologists, doctors and psychiatrists who do speak out. Not everyone is silent.
     
  13. Dolphin

    Dolphin Senior Member

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    It would certainly be good if working doctors incl. psychiatrists, or psychologists spoke out. However, in terms of writing letters and the like, I can see why it doesn't happen. As well as their working week, they will likely have general reading they need to do to keep on top of things for their profession. Then if they have research interests, they will be following that. Some may be asked to review papers in their free time. All this on top of whatever is going on their personal lives.

    And to write a letter, one has to feel confident that one is up-to-date with evidence and it can be hard to feel that and doctors and psychologists have to be careful they don't make errors.

    So I can see why it doesn't happen.
     
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  14. alex3619

    alex3619 Senior Member

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    Yes @Dolphin, I can see it too. Which is why I try not to focus on individual responsibility, but collective responsibility. We can't expect all doctors to be on this, but is this true for every doctor, every organization, academics etc? I don't think so. So the profession is responsible, but individual doctors have what I think can be called diminished responsibility, not they will like that phrase.

    Its the big systems that are failing us.
     
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  15. Dolphin

    Dolphin Senior Member

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  16. Valentijn

    Valentijn Activity Level: 3

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    I don't think this got mentioned here, but here was Robin Murray's earlier draft of the editorial for them to publish with the letters responding to the recovery paper:

    The underlined text is the part which was omitted from the final publication.

    Calling it "chronic fatigue" just adds to the overall class :rolleyes:
     
  17. Roy S

    Roy S former DC ME/CFS lobbyist

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    Thanks for posting this, Valentijn. It still amazes me how effective the propaganda campaigns against advocacy for ME are. At least now some of the evidence is available online.
     

    Readers will know that the topic of chronic fatigue/ME is a highly contentious one and may wish to refer to a recent UK Sunday Times article by Michael Hanton (2013) describing some of the campaigns of intimidation which have been addressed at researchers investigating psychological aspects of this condition. Dr Charles Shepherd, one of our correspondents, has, of course, dissociated the ME Association from such intimidation"
     
  18. biophile

    biophile Places I'd rather be.

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    Not to mention it was Michael Hanlon, not Michael Hanton, who wrote the article in question.

    Add those two errors to the other two or so fundamental factual errors published in the recovery paper itself (at least one of which they are aware of and failed to correct), not a good trend.
     
    Last edited: Apr 14, 2014
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  19. Purple

    Purple Bundle of purpliness

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    What was the editorial for/in which journal and who is Robin Murray?
     
  20. Valentijn

    Valentijn Activity Level: 3

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    PACE recovery paper in Psychological Medicine.
     

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