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PACE Trial and PACE Trial Protocol

Discussion in 'Latest ME/CFS Research' started by Dolphin, May 12, 2010.

  1. Graham

    Graham Senior Moment

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    And note that Simon's illustration uses a Normal distribution. It would be interesting to see that on a skewed distribution where the s.d. is disproportionately larger, and the mean is far off centre stage.
    biophile, Sean and Bob like this.
  2. Dolphin

    Dolphin Senior Member

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    One more PACE Trial paper on the way:
    (from the MEA FB page: https://www.facebook.com/permalink.php?story_fbid=676962502361411&id=171411469583186)
    ukxmrv, Esther12, Min and 5 others like this.
  3. biophile

    biophile Places I'd rather be.

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    Interestingly, this is what James Coyne said about another study?

    http://jcoynester.wordpress.com/201...k-for-depressive-symptoms-in-cancer-patients/
    Bob likes this.
  4. biophile

    biophile Places I'd rather be.

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    Not PACE Trial related, and have not evaluated the details, but the conclusion about journals sounds familiar in general:

    "Today is the 6 month anniversary of the publication of the original paper, and we are still no closer to discovering what’s actually going on behind the scenes at PLoS Biology. The take home lesson here is that if you find a problem with published science, you’re better off writing it down on paper and throwing it to sea in a bottle, than you are trying to engage in reasoned constructive conversation with the gatekeepers of information, the journals. It’s 2014 now, and this state of affairs just saddens me."

    http://www.psblab.org/?p=159
    Esther12, Roy S, Min and 1 other person like this.
  5. biophile

    biophile Places I'd rather be.

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    These new videos from ME Analysis were recently posted on Co-Cure:

    6: ME Recovery Song (cheeky, amusing, catchy, banjo song about 'recovery' in the PACE trial)



    7: How's That Recovery? (a more formal explanation of problems with the 'recovery' criteria)

    Last edited: Apr 28, 2014
    Esther12, Bob, ukxmrv and 5 others like this.
  6. Dolphin

    Dolphin Senior Member

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    Esther12 alerted me to this blogpost that links to ME Analysis #7, "Fluctuation, perception and more PACE trial ridiculousness": http://momentarysolutions.wordpress...erception-and-more-pace-trial-ridiculousness/.

    It is quite long so most people won't want to read it all. Anyway, she talks about the different levels she can be at (she's even able to go on five mile walks some times) and how they can vary a lot. Also, she describes how the same four severity levels she varies between can be described in two different ways.

    [..]

    This last bit is relevant because, for example, recovery was measured at a single point in time.
  7. biophile

    biophile Places I'd rather be.

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    And here is the thread on that paper:

    http://forums.phoenixrising.me/inde...in-the-pace-trial-of-therapies-for-cfs.29882/
    Min likes this.
  8. Dolphin

    Dolphin Senior Member

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    This isn't an PACE-Trial-specific point but I think it has some relevance to improvements, recovery, etc.

    I just saw this blog post (which has nothing to do with using CBT, GET, or similar treatments)

    http://quixoticmeblog.blogspot.ie/2014/05/two-examples-of-how-mecfs-has-become-my.html

    It ends:
    MeSci, Cheshire and Valentijn like this.
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Very good points well made. There are two, connected symptoms that I became particularly accustomed to - anxiety and palpitations. The anxiety was almost ever-present, and the palpitations occurred mostly just after I lay down in bed. Once I realised that neither was related to any imminent threat, I stopped worrying about them and was able to ignore them to a significant extent.
  10. Dolphin

    Dolphin Senior Member

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    Just saw this and thought I'd post it somewhere

    http://psychologyatmanchester.edublogs.org/senior-seminar-timetable-2013-2014/

    Valentijn, Simon and Esther12 like this.
  11. biophile

    biophile Places I'd rather be.

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    Still no predictors/mediators paper from PACE Trial data. They must have data dredged that thing to hell and back by now.
    Valentijn, Simon, Min and 2 others like this.
  12. Esther12

    Esther12 Senior Member

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    Where is the PACE mediators paper!? Are they holding it back in the hope that 2.5 year data will allow them to claim being in receipt of benefits/being a member of a patient group/etc harms recovery, after failing to get these results for the initial data?
    Valentijn likes this.
  13. Dolphin

    Dolphin Senior Member

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    Prof. Derek Pheby critiques the PACE Trial
    (From the May 2014 newsletter of the Shropshire ME Group. Prof. Derek Pheby presented at their conference in April)

    Valentijn, Sean, biophile and 3 others like this.
  14. Esther12

    Esther12 Senior Member

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    A bit OT, but I was just reading a bit of an irritating response to PACE from when it was first published. Then googled the guy who wrote it, and found that RateMDs.com gave him entirely negative reviews for being paid by insurance companies to push patients through 'rehabilitation' they found harmful:

    http://www.odysseyhealthservices.co...drome What Works What Doesnt.pdf&df=ebulletin




    http://www.ratemds.com/doctor-ratings/3207779/Dr-Richard-Marlin-Burlington-ON.html


    [​IMG]
    [​IMG]
    * 23/02/14 1 1 1 1 Query: Should you contact your employer or union if you get a letter from your insurance carrier that you are going to be assessed at Odyssey Health Services where Dr. Marlin works out of? Respond
    [​IMG]

    * 17/12/13 1 1 1 1 The College of Psychologists of Ontario for Dr. Richard Marlin are, https://members.cpo.on.ca/public_register/show/... & https://members.cpo.on.ca/public_register/print.... My LTD insurance provider, Great West Life, has a 'corporate contract' with Odyssey Health Services which is owned/operated by Dr. Richard Marlin. Unfortunately, I wasn't aware of Dr. Marlin's illegal&immoral activities until my involvement in the 'highly customized' program became so detrimental to my health that I was forced to hire a lawyer to remove me from his care & ensure my GWL salary replacement benefit wouldn't be impacted. I'm trying to recoup my financial loss in light of his admissions of professional misconduct. Unfortunately, patients/clients are responsible for researching medical providers, even when forced into treatment. I wish I was able to research his total disregard for the profession, illegal actions and admission of guilt before accepting imposed treatment. KNOW your rights! Respond

    04/12/13 SYSTEM: 2 negative duplicate or disallowed ratings automatically removed
    [​IMG]
    16/11/13 1 1 1 1 IT IS ORDERED THAT: Dr. Richard Marlin shall appear before the Discipline Committee to be reprimanded, and both the fact of the finding of misconduct and the fact of reprimand shall be published on the College’s Registrar and in the Bulletin. Read it all at this link: https://members.cpo.on.ca/members_search/print/1012 Shame on these types of companies and so called professionals. I advise everyone to make a complaint to the College of Psychologists who has had to deal with unprofessional conduct from Marlin and his staff. Caused me so much stress, pain and added sickness. No real therapy or help from any of the staff and the level of unprofessionalism was astonishing !!!! Respond
    [​IMG]
    [​IMG] 03/11/13 1 1 1 1 I was sent to Odyssey Health in Vancouver to be assessed by my LTD insurance company, RBC. Dr Marlin was seen only a couple times during the assessment and provided a great sales pitch of Odyssey Health. Remember they are being paid by your insurance company to assess your current status of health and whether you are capable of returning to work. If you aren't they will also try to do treatment and I am sure you will be miraculously healed by their treating psycologist/kinesiologist and back to work in no time...LOL. But according to my Doctor and lawyer this is a conflict of interest and they should not be doing treatment. They send very carefully worded letters to your Doctor looking for a signature of approval of treatment. I refused treatment as it is my medical right to choose who treats me. I cant state this more highly, USE A LAWYER AND KNOW YOUR RIGHTS, TALK WITH YOUR DOCTOR AND EXPLAIN WHO ODYSSEY IS. They will take advantage of you if you don't know your rights!! Respond
    [​IMG]
    01/06/13 1 2 1 1 GWL sent me to Dr.Marlin for an assessment, they had me sign a bunch of papers letting my doctors give my medical records, I did this two days ago only to find this page and also found out that he has a pending investigation of medical misconduct. Link below. We do not know what to do, the insurance says we have to go there, but in our contract it says they can send you elsewhere. We are not looking for a lawyer because Odyssey wants to do these tests that take hours and I am unable to sit for more then a few minutes. I have to be lying down all the time. How am I going to do these tests. if anyone knows any good lawyers that has dealt with this company please let us know on a message here. I have been approved for CPP disability a year ago, I'm on two insurance LTD, one i'm approved past the 2 year mark and the other well here we are. if the gov. approves me, then why not GWL. it's ridiculous. Here's the link: https://members.cpo.on.ca/members_search/print/1012 See Responses
    [​IMG]
    08/01/13 1 4 1 1 This person Richard Marlin is clueless and makes me go through very painful exercises that puts me in bad relapses and my condition with fibromyalgia has gotten a lot worse and I'm so stressed out about his bullying techniques. Is he a doctor or what???? I'm in so much pain and so afraid of going back and I have no choice because Great West Life is forcing me. I can't sleep any-more I'm so stressed out. He's destroying me. Respond
    [​IMG]
    [​IMG] 22/04/11 1 1 1 2 I would find someone else to assist me with therapy Respond
    [​IMG]
    [​IMG] 06/04/11 1 5 1 1 The person above said it all. Right on the money. They treat medical issues with no medical doctors on staff and only treat with bullying tactics and painful exercises. Avoid at all costs!!! Respond
    [​IMG]
    [​IMG] 28/01/11 2 5 1 1 Richard Marlin works for insurance companies like Great West Life, in the interest of insurance companies and not in the interest of the patient being assessed and/or treated, if you want to call what they do treatment. All it does is make things terribly worse and they force you into pain inducing activities that you cannot do. Money racket and should not be allowed to practice as a Doctor. I was not allowed to give my opinions and made to seem like I didn't know what I was talking about when its my body and my medical issues over 2 decades. I finally had major surgery and the insurance hired these clowns to use their scamming techniques in an attempt to drive me off benefits. What a scam. Not recommended. If you can avoid Dr Richard Marlin and his Oddysey health services scam do so at all costs. It's an insurance ploy to scam beneficiaries out their disability benefits. Respectfully and honestly from Anonymous due to ongoing legal issues.


    Respond
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  15. Dolphin

    Dolphin Senior Member

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    I set up automatic updates for the Freedom of Information request 'Selected data on PACE Trial participants' on https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part

    I got the following update today:
    Thanks to him for all the work it must have taken to put such comprehensive & well-referenced comments together.
    Cheshire, Roy S, Bob and 4 others like this.
  16. Dolphin

    Dolphin Senior Member

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    Erica Verrillo featured this request in this blog post (and explained why she thinks it is important): http://www.cfstreatmentguide.com/blog/the-big-lie
    Sean likes this.
  17. alex3619

    alex3619 Senior Member

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    A question for discussion.

    SF-36 data on healthy working age adults is not a Gaussian distribution. It looks more like a truncated exponential, from 0 to 100. The median is probably 100, although it would not surprise me in some cases if it were 95.

    SD is, so far as I am aware, undefined for such functions. Its use in such cases has not been mathematically validated. Would any mathematicians care to comment?

    Using SD on normal populations of healthy working age adults is therefore undefined, invalid or irrelevant. Hence no calculation can be made based on SD to define normal or recovered. Other criteria must be used.

    So the entire recovery bluk paper is based on nonsense statistics. Hence its invalid. Its the same for any claims of return to normal. Normal is mathematically unsubstantiated in PACE.

    Does this about sum it up? Are there additional issues? Is SD somehow valid for exponential and other functions and I am not aware of it?

    This is quite separate from effect sizes, changing start and other endpoint criteria etc. after the trial was under way.

    Any statistician should have warned them. The Lancet's statistician should have warned them. While I think they do cite multiple statisticians in these studies, were they even told the data is non-Gaussian? What proper statistical advice obtained? I can only conclude that either they did NOT get proper statistical advice (possibly because the statisticians were not properly briefed), or that the advice they got was incompetent.
    Valentijn and Sean like this.
  18. user9876

    user9876 Senior Member

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    The median for the working age population (<65) is 100 and goes down to 95 for the full population. The 25th quartile is 80 for the entire population. 90 for the working population and 95 for the working population with no long term health problems.

    It is quite exponential but the there is a little more in the tail.


    For the exponential distribution the mean = SD but I don't know how they should therefore be calculated when they differ to get an accurate estimate. But the distribution is not that good a fit to the exponential. Hence better to use median and percentiles which are more robust to noise.
    The other question is for recovery what set of people do you compare to. Those who are healthy or healthy + long term health problems.
    There are other problems using the mean and standard deviation given what is probably a non-linear scale. i.e. is the difference between not being able to wash and dress and having difficulty with washing and dressing the same as the difference between having difficulty with vigorous exercise and having no difficulty.


    A statistician should know the assumptions for each test and check them! Really they should be treated as formal preconditions. One of the problems is that questionnaires are allowed to be called scales and then treated as such and after that abstraction is made no one thinks.
  19. alex3619

    alex3619 Senior Member

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    @user9876

    I think this last line might be quite important. That is a possible reason why they got it so very wrong.
    Valentijn and Sean like this.
  20. Graham

    Graham Senior Moment

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    It is only valid to use the mean and standard deviation to calculate things when you know what the distribution is, and exactly what the calculation should give. For example, we know that mean ± s.d. for Normal/Gaussian distributions enclosed the middle two-thirds of the sample. If you don't know what the distribution is, and even more so if it is clear that it is very much not Gaussian, such calculations are meaningless simply because we have no idea what they would represent. Doing the same calculation on incomes in the UK in 2007/08 gives the result that earning minus £1.30 per hour is "within normal range".(evaluatingpace.phoenixrising.me/aps2furtherdetai.html)
    alex3619 and Valentijn like this.

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