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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. wdb

    wdb Admin

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    This is the histogram in question.
    PACE-Histogram-(1).png

    Notice how poorly the normal plot reflects the distribution of the actual data, as has been said it was clearly grossly inappropriate for them to have treated the data as though if it had followed this curve. ±1 standard deviation should account for 68.2% of the population not what looks more like 90-95%.
     
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  2. Sean

    Sean Senior Member

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    I was working full time. It is appropriate for me.​
    Objectively confirmed return to something near their pre-illness capacity for general activity certainly is an appropriate definition of recovery.

    So the 'solution' is to just ignore those uncooperative objective measures, and arbitrarily define 'recovery' in purely subjective terms?

    It's beyond parody. Especially for CBT, which did not produce any objective improvement at all.

    Something has clearly gone terribly wrong with peer review in this area of medical science.​
     
  3. Sasha

    Sasha Fine, thank you

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    Response from the MEA's Dr Shepherd:

    http://www.meassociation.org.uk/?p=14333

    Initial reaction from Dr Charles Shepherd, Medical Adviser, The ME Association:

    It is really quite bizarre to find that there is absolutely no data whatsoever in this paper on what most people would regard as three objective markers of recovery:
    1 a return (or ability to return) to full time meaningful employment or education
    2 no longer claiming any DWP sickness or disability benefits
    3 an estimation of how far someone can walk
    Just as surprising is the absence of any discussion on the use of benefits as a marker of recovery along with the very unsatisfactory reasoning given in the paper (on page 6) for not using employment status or an objective measure of activity levels:
     
  4. Sasha

    Sasha Fine, thank you

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  5. Valentijn

    Valentijn Activity Level: 3

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    That's a good point. This paper doesn't seem to mention the 6 minute walking test at all. Why make that data disappear after the main PACE paper made such a big deal about it?
     
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  6. Valentijn

    Valentijn Activity Level: 3

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    This also stuck out:
    So if the patient didn't self-rate, the doctor's rating of that patient was used. And the doctors rated all patients, yet that rating doesn't seem to be included unless the patient didn't self-rate. This seems like a great opportunity for the researchers to take a look at the self-rating versus the doctor rating and cherry pick the best set of results to use.
     
  7. alex3619

    alex3619 Senior Member

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    To see what all the fuss is about, I ran an SF-36 online for me. I tried to post the results. It wont go as a graph, so here is my final data summation:

    PCS (Physical)18.7

    MCS (Mental) 47.2

    http://www.sf-36.org/demos/SF-36.html

    Both these results are NORMATIVE and I think the norm is 50.

    On non-normative my physical PF is 30! I am only a MODERATE patient too, and I have not been particularly bad lately, aside from a brief crash the other day. (Under the ICC I would class as severe though, as I am mostly homebound though not bedbound.)

    So what does this say about an entry criteria of 65? (Though presumably this is a composite score.) I wonder how low a severe patient would score? I am going to run a hypothetical severe patient, based on my limited knowledge, just to get an idea.

    OK, as a general idea I get normative PCS of 10.9 and MCS of 43.9. Of course I have no idea how accurate this is. Non-normative physical functioning was 15.2.

    Given the vast difference between moderate and severe patients, and severe and very severe, I have to ask how useful is SF-36 for ME? Ok, lets compare with how I was in the late 80s when I was first diagnosed, though my memory of that time is fubar so again I can't say this is really accurate.

    My normative PCS was 26.6. Yet I was a LOT better physically than I am now. My MCS was 48.1. My non-normative PF was 51!

    This was when I had a LOT more energy and was able to attend university full time (then come home and collapse). Something is really wrong here, and I have no way to be sure if the test I did is a typical SF-36.
     
  8. Min

    Min Senior Member

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  9. alex3619

    alex3619 Senior Member

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    Hi Min, I would hit "like" for your post but I don't in any way want to be seen endorsing the AfME claim. It reads like a pro-White press release. I am happy you posted this though. They also persist in confusing APT with pacing, where the rules of APT qualify almost as a logical negation of pacing. Bye, Alex
     
  10. Esther12

    Esther12 Senior Member

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    If they were blinded to which treatment arm the patient was in, this would be okay. If they weren't blinded, then that's pretty ridiculous.

    I can't believe that they didn't even require that there wasn't an over-lap in scores for the entry criteria and for 'recovery'. They just added in little provisos instead. They really don't give a shit do they? They think that they've so successfully portrayed their critics as anti-science and stigmatising mental health issues that no-one with any power or influence will care about how they misrepresent their work to patients. I think that the tollerance for this sort of spin is indicative of the real stigma of mental health issues. If CFS was not widely seen as a mental health problem, I do not think that it would be seen as so acceptable to misrepresent the efficacy of the treatments available for it.

    Thins like this from the Science Media Centre:

    "Poor CFS patients can get despondent when they see honestly presented data about the poor chances of recovery... so it's great the we've been able to cheer them up with the prospect of recovery! Remember, a good trusting relationship with your doctor is very important too, so don't look too closely at the figures or you might become one of those angry dysfunctional patients we all hate."
     
  11. Sean

    Sean Senior Member

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    From the Zombie Science Propaganda Unit:
    That is either straight fraud, or criminal incompetence. What a disgrace.
     
  12. Esther12

    Esther12 Senior Member

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    For those interested I thought that I'd whack the press releases and 'expert commentary' together. No press reports about it yet, when normally SMC stuff does gain traction. Maybe reporters are busy looking in detail at the specifics of the paper and the criteria use.

    *sigh*.


    http://bristol.ac.uk/news/2013/9101.html

    "Urhh.... we're just too stupid to work out what recovery means to CFS patients. We assumed that they would want us to use a special definition, which included high levels of fatigue and disabilty."

    http://www.sciencemediacentre.org/e...nto-therapies-for-chronic-fatigue-syndromeme/

    http://medicalxpress.com/news/2013-01-treatments-chronic-fatigue.html

    http://www.qmul.ac.uk/media/news/items/smd/89978.html

    From the Medical Research Council:

    http://www.mrc.ac.uk/Newspublications/News/MRC008984
     
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  13. Valentijn

    Valentijn Activity Level: 3

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    I think it's "too stupid to read the paper, so he read the abstract and pretended he knows what the paper really says".
     
  14. SOC

    SOC Senior Member

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    Thanks for that, wdb. I took your figure to my class of 12-14 year old homeschooled math and science students to show them the dangers of math and science illiteracy in our society. They had no problems seeing how oddly the data was represented. :)
     
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  15. user9876

    user9876 Senior Member

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    It must be a little bit embarassing for Esther Crawley as she claimed pace had a 40% recovery rate a while ago. So when they claim a 22% (15% above SMC) she has been shown to be wrong.

    But then she promises her patients a 97% recovery rate.
     
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  16. PoetInSF

    PoetInSF Senior Member

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    Using the population measure for the recovery criteria is indeed a problem. It may be normal for 70 year old or obese 50 year old to score 60. But it is a nonsense to call a patient who used to be healthy enough to score 100 a "recovery" because he now scores 60.

    Calling it a recovery if you no longer fully meet the criteria for CFS is also problematic. Having 4 out 8 symptoms may be required for the diagnosis, but having only 3 out of 8 after having had 4 is not a recovery. Imagine calling it a recovery because you no longer have sore throat when you are still left with severe cases of PEM and unrefreshing sleep.

    They should just do away with the recovery rate and stick to the improvement measure. It serves no purpose other than for propaganda, as in this press release.
     
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  17. WillowJ

    WillowJ Senior Member

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    it wasn't required to meet CDC or modified London (whoa, did they admit to modifying London previously?) in order to enter. So again no indication of whether this is improvement or a change of any kind
     
  18. WillowJ

    WillowJ Senior Member

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    this explains the scoring and subscales of SF-36 as used in the PACE trial, thanks to Graham and the ME Analysis video production team.

     
  19. biophile

    biophile Places I'd rather be.

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    Are those images in the news articles depicting being tired or are they depicting a facepalm?

    They should just all use this image instead:

    [​IMG]
     
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  20. Persimmon

    Persimmon Senior Member

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    I guess lots of us are soon going to be on the receiving end of a new round of "helpful advice" from friends or family members - You know, things like:
    "Hey, I saw this fantastic article about how you can fully recover from your chronic fatigue. Isn't it exciting! You've got to get on and start this therapy ASAP..."

    I never feel I have an adequate answer to these sorts of well-intentioned reactions to the psychobabble propaganda.
    If you say outright that it's scientific fraud, you look like an idiot, or at least that you're being unreasonable; inviting them to read about the study's flaws is equally unproductive...


    Ps just did the SF-36 Physical Function test with my frail but healthy 88 year old neighbour (she's charming and fun.) We scored the same (60points). I guess that proves I'm already fully recovered: I meet the PACE recovery threshold, and I function at the same level as a healthy person. QED
     
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