Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
Discuss the article on the Forums.

A critical commentary and preliminary re-analysis of the PACE trial

Discussion in 'Latest ME/CFS Research' started by Valentijn, Dec 14, 2016.

  1. AndyPR

    AndyPR Senior Member

    That would be the number of people who entered the trial on a SF-36 score of between 60, the recovery threshold, and 65, the entry threshold.

    And I believe Hutan has it right, the y-axis is percentage of working age general population.
     
  2. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,614
    Likes:
    12,448
    South Australia
    I think they'll ignore it entirely... Until they have to correspond to calls to retract the "Recovery" paper from Psych Med.
     
  3. Tom Kindlon

    Tom Kindlon Senior Member

    Messages:
    1,387
    Likes:
    8,271
    TiredSam, Luther Blissett and Simon like this.
  4. RogerBlack

    RogerBlack Senior Member

    Messages:
    891
    Likes:
    2,889
    Thanks go to everyone, centrally and peripherally involved in bringing this to fruition.

    'where there were no gains'.
    I recall comments about hints in the data that participants that had withdrawn may have had their conditions worsened.
    Is it safe to assume that nothing meaningful can be said about this due to limitations of the released data?
    Was there any indication that they kept data on withdrawl reasons?
     
  5. Barry53

    Barry53 Senior Member

    Messages:
    2,277
    Likes:
    13,705
    UK
    @Hutan, many thanks. Knew I must be missing the obvious :). I did not read the explanatory text properly for the graph, just got hung up on the word "sample" - in this case a sample of normal healthy people.
     
  6. Barry53

    Barry53 Senior Member

    Messages:
    2,277
    Likes:
    13,705
    UK
    Sounds right, based on the graph's explanatory notes (which I should have digested in the first place):-
    upload_2016-12-14_23-54-9.png
     
    Last edited: Dec 14, 2016
  7. Barry53

    Barry53 Senior Member

    Messages:
    2,277
    Likes:
    13,705
    UK
    I think it is a massive plus that the lead author is a psychology researcher. It clarifies big-time that good-science psychology researchers do exist, and that they also agree PACE is a dog pile. Moreover it gives the bad-science researchers reason to consider they are not immune from critical peer review from within their own discipline. And it shows the ME/CFS community actively embraces all good-science researchers, of any discipline.
     
    mango, antherder, Jan and 25 others like this.
  8. Barry53

    Barry53 Senior Member

    Messages:
    2,277
    Likes:
    13,705
    UK
    This publication really brings home to me what I have been reading lots about since joining PR, and has been slowly filtering through my grey matter. I fully appreciate that a trial such as PACE is impossible to do blind; it has to be unblinded. It would take an awful lot of brain fog to not have some clue what sort of treatment you were getting, be you patient or researcher. Fine so far. But the question is what do you do about that? The PACE trial authors had a simple solution - ignore it! (In fact ignoring questions they do not like seems to be the standard strategy). Indeed they seemed to exploit it, with what in effect were some fairly heavy sales pitches.

    I am no expert, but from what I read, and based on common sense, you need to reference these "floating" subjective readings against some unambiguous objective measurements; without absolutes to reference against, the subjective values can mean more or less what you want them to mean.

    It is a bit like a car whose electrics have a bad "earth" (quotes because it is not really earth, but always known as that). All the voltages are referenced off of the car's earth, either directly or indirectly, and all works well if the earth (the reference datum) is good. But if the earth is bad, then the voltages can float all over the place, and the various circuits start to see all the wrong voltages to what they are designed to expect. Basically, if you do not have good reference points then everything else is suspect.
     
  9. Anne

    Anne Senior Member

    Messages:
    295
    Likes:
    723
    Who (or what if it's an algorithm) decides which articles will get on PubMed?

    When will we know if this one does, do you know?

    (sorry for not knowing these things...)
     
    Luther Blissett likes this.
  10. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,447
    @Anne - I am sorry, I don't know how or why certain articles get onto PubMed.
    It has seemed to me that there is sometimes a lag between publication and when an article appears on PubMed but this is only what I believe I have observed.
    I hope someone else here on PR might know the answers.
     
    Luther Blissett and Anne like this.
  11. JaimeS

    JaimeS Senior Member

    Messages:
    3,205
    Likes:
    11,821
    Mid-Ohio Valley, United States
    Can't imagine -- when you click on that, it takes you right to the article. I've noticed some issues synching with Facebook lately... I just enter the title manually and the image manually if it does that.
     
  12. Woolie

    Woolie Senior Member

    Messages:
    1,930
    Likes:
    14,558
    Yes, I totally agree, @A.B. These recovery definition errors are only the tip of the iceberg. Even if you corrected all of the problems described in this paper, there would still be huge, even deeper flaws in the data. I see there's a brief mention of the problem of using subjective endpoints in a non-blinded study, but they don't go into too much detail on this.
     
    Jan, Snow Leopard, MEMum and 4 others like this.
  13. Woolie

    Woolie Senior Member

    Messages:
    1,930
    Likes:
    14,558
    Indeed. Reading those comments was almost like listening to the PACE authors themselves. The underlying narrative was that "patients" should pull their heads in and only "researchers" or "psychologists" (like the commenter) have the appropriate qualifications to speak. Even though this paper was headed by a psychology researcher, this is played down - the word "patients" is used at every opportunity when describing the authors. Perhaps even patients being involved in a collaborative project makes it problematic in Goudsmit's eyes? It should be "us" versus "them"?

    We don't need this kind of snobbery coming from our so-called allies any more than we need it from the BPS crowd.
     
    Snow Leopard, Jan, TiredSam and 12 others like this.
  14. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,910
    Likes:
    12,757
    Sth Australia
    This was clearly fraud done. Can nothing legally be done about this? Can people keep doing false studies which lead to our patient group getting harmed and keep getting away with this? They should at the very least be forced to publically appologise for purposely putting out misleading research and to just think public research money got used for this

    They should be banned from ever doing any more research OF ANY KIND
     
    Last edited: Dec 14, 2016
    actup, Jan, Dr Speedy and 4 others like this.
  15. RogerBlack

    RogerBlack Senior Member

    Messages:
    891
    Likes:
    2,889
    It doesn't really work that way alas.
    Absent a smoking gun, the absolute worst that is likely to happen is a retraction of the PACE papers.
    (which would of course be great).
    Note, for example, Wakefield has not been prosecuted in any other way than losing his medical licence, though his research was indirectly responsible for perhaps 10000 deaths. http://antivaccinebodycount.com/

    In Wakefields case, which lead to him losing his medical licence, he did many, many things wrong.
    Misused various funding, and lied to various funding bodies.
    Did not reveal that he was involved in court action against MMR when instigating the trials.
    Did not get ethics committee approval for all the trial patients.
    Actively lied in several respects to many organisations about how the patients were selected.
    ...

    His conduct on the paper alone in the lancet was considerably worse than White et al.
    Unless someone reveals a smoking gun (say an email 'I hate people who claim to have CFS and am intentionally lying in this paper'), more than a retraction isn't happening.

    Unfortunately.

    There is a gap between what would be unambiguous fraud - if for example there was evidence that they'd altered the data, and what can be brushed off as 'Our analysis was poorly chosen'.

    Fraud requires intent to mislead.
    I unfortunately do not doubt that White et al believe the initial paper to be true.
     
    Snow Leopard, JaimeS and slysaint like this.
  16. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,153
    Likes:
    17,871
    You're probably right, unfortunately, that the PACE people will claim they believed their results to be 'true'. I'm not at all convinced of this. I think they were influenced by their greed (financial and career) and their prejudice against pwme.

    Wessely has been known to use the metaphor of setting a ship off from one port and having to adjust its route along the way in order to arrive at the desired destination, unwittingly (witlessly) pointing out exactly the problem with PACE.

    See, for example these blog pieces by a US academic lawyer, Steve Lubet:

    http://www.thefacultylounge.org/2016/11/the-pace-study-open-access-and-conflicts-of-interest.html

    http://www.thefacultylounge.org/201...simon-wessely-defender-of-the-pace-study.html

    To quote the latter in a comment addressed to Wessely:

    'Finally, you point to your own blog post, which ironically undermines your very point. You compare the PACE Trial to an ocean liner plotting a course from Southampton to New York, and express satisfaction that it made the trip “successfully across the Atlantic,” despite course corrections along the way.

    But surely you realize that a randomized controlled study is not supposed to have a fixed destination, but rather should follow wherever the evidence – or the current, to maintain the metaphor -- leads. You thus virtually admit that the PACE Trial was always intended to reach a particular result, and that adjustments along the way were necessary to get it there. Just so.'
     
  17. slysaint

    slysaint Senior Member

    Messages:
    2,124
    Likes:
    11,464
    :lol:and they think our illness is caused by false beliefs...............
     
  18. Dr Speedy

    Dr Speedy

    Messages:
    91
    Likes:
    228
    I have just read the comments by Ellen Goudsmit about this article on Facebook. The strange thing is she doesn't say anything of substance, there is no real criticism of the paper either even though there are things you can criticize just like in any other paper; Ellen just moans and whinges. To me it all comes down to one word: jealousy. The question one should ask is the following; the original PACE paper was published at the beginning of 2011 with more delightful "honest" work published since. Why hasn't Ellen Goudsmit published a review of the PACE trial since ?? (Yes I know she published a few comments but that's something totally different).
     
  19. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,614
    Likes:
    12,448
    South Australia
    The same reason why no one else published a review of the PACE trial beyond various commentaries until now - no one had access to the data for re-analysis (despite many people asking for it).
     
    MEMum, Luther Blissett and actup like this.
  20. Dr Speedy

    Dr Speedy

    Messages:
    91
    Likes:
    228
    Luther Blissett likes this.

See more popular forum discussions.

Share This Page