1. Guest, read our 'News in Brief' post for w/c 13th Jan by clicking here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019

Discussion in 'PsychoSocial ME/CFS Research' started by MEMarge, Oct 2, 2019.

  1. Lucibee

    Lucibee Senior Member (Voting Rights)

    Messages:
    1,045
    Likes Received:
    10,938
    Location:
    Mid-Wales
    Lucibee said:
    "We are uncertain..." (lots and lots).

    "Uncertain" count (full review):
    2017 version - 1
    2019 version - 77
     
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    6,084
    Likes Received:
    61,608
    Hilda Bastian’s blog makes a lot of important points but, in her own words, it does not go nearly far enough. Presumably there is some value in being polite to the new editor but somewhere it needs to be stated that the flaws in the analysis are far deeper than she addresses.

    When I refereed the individualised patient data version that got binned I simply said
    A) none of these studies are controlled trials in a valid sense so should not even have been analysed according to the authors’ protocol.
    B) the authors had no business to be writing the review since they have powerful competing interests in a controversial area
     
    Chezboo, JaneL, Simon M and 52 others like this.
  3. NelliePledge

    NelliePledge Senior Member (Voting Rights)

    Messages:
    4,516
    Likes Received:
    29,745
    Location:
    UK West Midlands
    Hopefully others will be along soon to play bad cop to Hilda Bastian’s good cop.
     
    JaneL, Simon M, MEMarge and 14 others like this.
  4. Lucibee

    Lucibee Senior Member (Voting Rights)

    Messages:
    1,045
    Likes Received:
    10,938
    Location:
    Mid-Wales
    I think the main issue I have with this, particularly over the SMD debacle, is that although Tom and Bob were correct to pull them up on not using SMD for the combined fatigue scores, because that's what the authors said they would do (and then didn't do it because it made the results look bad), combining the results in this way was always flawed.

    FSS and CFQ are completely different scales, and measure different things to produce a number (the scale goes in the same direction, but that's about it). But it's like combining distance and speed - FSS might be a proxy for absolute fatigue, but CFQ measures change in fatigue (how much worse have you got in the past 3 months or before you were ill or whenever you can last remember). They should NOT ever be combined. Even combining individual participant results within a study is dodgy, because it's individual mean difference that is important and not difference in group means (what they are referring to here as "mean difference" confusingly). Combining the 3 different ways of recording CFQ is not valid because the likert and binomial scores do not exactly correspond.

    One would hope that by making them do it again, as they originally said they would, they would realise why it is a problem, but clearly they haven't.
     
    JaneL, Simon M, Mithriel and 30 others like this.
  5. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    1,838
    Likes Received:
    12,807
    The end points mentioned only go up to about 70-weeks. Does that mean someone forgot to include the 134-week data for PACE? That probably needs correcting if the protocol says to use the furthest end point.
     
    JaneL, ukxmrv, Mithriel and 25 others like this.
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    3,873
    Likes Received:
    32,880
    Location:
    UK
    How will this affect any publications/applications for research etc that cite the previous version of the Cochrane review?

    eta: also can someone explain what's going on here
    so if this 'new' review is based on the search they did in 2014,
    how come they added 3 studies?

    and 'no ongoing studies'?
     
    Last edited: Oct 3, 2019
    JaneL, Ravn, inox and 9 others like this.
  7. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    5,258
    Likes Received:
    34,340
    Precisely. An officer in the forces once responded to a concern of mine with "I think I can assure you ...". Probably a politician now.

    Sort of Chinese whispers methodology.
     
    JaneL, Ravn, DokaGirl and 5 others like this.
  8. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    5,258
    Likes Received:
    34,340
    I also think these organisations must be consulting their lawyers these days, before many of their responses, and just hunker down to try and ensure any future legal sh*t storm goes over their heads. As I elaborated on in this post yesterday:

    https://www.s4me.info/threads/trial...-crawley’s-ethics-missteps.11566/#post-205731
     
    alktipping, JaneL, Ravn and 8 others like this.
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    3,873
    Likes Received:
    32,880
    Location:
    UK
    Having only skimmed through noting the overwhelming 'uncertain', 'low-certainty evidence' along the way I was gobsmacked when I read this para in the final discussion section re Agreements and disagreements with previous studies or reviews
    how the hell did they come up with that conclusion?
     
    Chezboo, JaneL, Gecko and 26 others like this.
  10. NelliePledge

    NelliePledge Senior Member (Voting Rights)

    Messages:
    4,516
    Likes Received:
    29,745
    Location:
    UK West Midlands
    You can only see the truth if you have your BPS goggles on
     
    JaneL, MEMarge, Ravn and 13 others like this.
  11. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    5,258
    Likes Received:
    34,340
    It's downright incompetent of them (putting it charitably). Indeed their own risk of bias is massive I think. Perhaps one day in a court room they may begin to realise it.

    Outcome Reporting Bias ...
    PACE trial ... most of the above. Hugely exacerbated by being fully unblinded.

    There truly must be some Machiavellian moves in play behind the scenes here.
     
    Lucibee, JaneL, obeat and 12 others like this.
  12. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    5,258
    Likes Received:
    34,340
    Actually I think it is. One of the big beefs not so long back was that ME being classified only under mental health. Maybe this touches on what @Michiel Tack posted, about Cochrane saying another review being considered from the ground up. The first step for that would be to have a sensible classification for where it would be done.
     
    JaneL, Ravn, WillowJ and 4 others like this.
  13. large donner

    large donner Senior Member (Voting Rights)

    Messages:
    1,069
    Likes Received:
    8,649
    How long before the BPS crew pump out gloating tweets claiming PACE has been proven a low risk of bias in terms of selective reporting?

    We all know what happens next, the new review they are promising gets a "multi disciplinary panel of experts", to spend five years muddying the waters in an attempt to make everyone forget about the Larun saga.

    Then they just pump out another Larun like crap paper in around 2024 "updated" using five more years of gravy train crap of new psuedoscience and data manipulation from the BPS library that is being funded as we speak.

    They have already stated publicly that subjective endpoints unblinded outcome reporting is good practice, so why will the next review be any different?
     
    JaneL, Ravn, Art Vandelay and 14 others like this.
  14. JohnTheJack

    JohnTheJack Moderator Staff Member

    Messages:
    3,158
    Likes Received:
    14,914
    Will S4ME be applying to join? @Adrian

    ETA: Or @Trish or @Andy or anyone?
     
    Last edited: Oct 4, 2019
    JaneL, Ravn, Simone and 14 others like this.
  15. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    1,074
    Likes Received:
    6,926
    Location:
    UK
    https://cmd.cochrane.org/our-scope

    What we cover
    The Cochrane Common Mental Disorders Review Group assists in the production and maintenance of Cochrane systematic reviews that assess the effects (including harm) of treatments in the prevention and management of a range of common mental disorders. We also engage in knowledge translation activities to support the use of our evidence in decision making.

    We mainly undertake intervention reviews, and we also produce reviews using multiple treatment meta-analysis. We look at interventions that prevent, manage and treat common mental disorders.

    Our reviews cover a range of conditions including depression, anxiety, eating disorders and post-traumatic stress disorder (PTSD). See our glossary of conditions for more details.

    etc.

    ----------------------------

    https://cmd.cochrane.org/glossary

    Glossary

    (Please note we are updating this glossary between Oct 2018 - Feb 2019)

    Adjustment Disorder
    Maladaptive reactions to identifiable psychosocial stressors occurring within a short time after onset of the stressor. They are manifested by either impairment in social or occupational functioning or by symptoms (depression, anxiety, etc.) that are in excess of a normal and expected reaction to the stressor.

    Affective Disorders
    Long-standing illnesses characterized by either sustained or intermittent disturbance in mood with no psychotic features, such as delusions, hallucinations, etc.

    Affective symptoms
    Mood or emotional responses dissonant with or inappropriate to the behavior and/or stimulus.

    Anorexia Nervosa
    Syndrome in which the primary features include excessive fear of becoming overweight, body image disturbance, significant weight loss, refusal to maintain minimal normal weight, and amenorrhea. This disorder occurs most frequently in adolescent females. (APA Thesaurus of Psychological Index Terms, 7th ed)

    Anxiety
    Persistent feeling of dread, apprehension, and impending disaster.

    Anxiety Disorders
    Disorders in which anxiety (persistent feelings of apprehension, tension, or uneasiness) is the predominant disturbance.

    Attempted Suicide
    The unsuccessful attempt to kill oneself.

    Bipolar Disorder
    A major affective disorder marked by severe mood swings (manic or major depressive episodes) and a tendency to remission and recurrence.

    Bulimia
    Episodic binge eating associated with the fear of not being able to stop eating, depressed mood, and self-deprecating thoughts. Binges are frequently terminated by self-induced vomiting. The bulimic episodes are not due to ANOREXIA NERVOSA or any known physical disorder.

    Chronic Fatigue Syndrome
    Cochrane has recently created eight new Networks of Cochrane Review Groups (CRGs). The formation of these networks provides a timely opportunity to review the scope of all CRGs and to consider changes where appropriate. In response to concerns raised by members of the CFS/ME community, Cochrane has been considering repositioning the editorial oversight of CFS/ME reviews. The Cochrane Common Mental Disorders Review Group currently sits within the Brain, Nerves and Mind (BNM) Network. In the future, reviews on this topic might sit with another Cochrane Review Group within the BNM Network, or they might transfer to another Network altogether, such as the Long Term Conditions and Ageing 2 Network. This is currently under consideration and a decision is anticipated before the end of 2018.

    Combat Disorder
    Neurotic reactions to unusual, severe, or overwhelming military stress.

    Conversion Disorder
    A disorder whose predominant feature is a loss or alteration in physical functioning that suggests a physical disorder but that is actually a direct expression of a psychological conflict or need.

    Depression
    Depressive states usually of moderate intensity in contrast with major depression present in neurotic and psychotic disorders.

    etc.

    ------------------

    Review Group Networks

    https://www.cochrane.org/about-us/our-global-community/review-group-networks
     
    JaneL, Mark Vink, Ravn and 11 others like this.
  16. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    5,258
    Likes Received:
    34,340
    I know @Michiel Tack already quoted some of Cochrane’s Editor-in-Chief, Dr Karla Soares-Weiser's comment, but reproducing here as I think it is really important (as well as ensuring it does not get lost if Cochrane ever decide to pull it down, but hopefully not that).

    To me this clearly signals the beginning of a changing of the guard ("today we are committing to"). The change will not, cannot, happen instantly, and the fact they appear to to be applying due process to it I find encouraging. But of course it's actions not words that count, and we shall see. The statement "today we are committing to" I would see as meaning they should be reaching out to advocacy organisations and patient groups very soon (within a month?), at least as a gesture of good faith, even if only for the purpose of establishing lines of contact. But I'm unfamiliar with how long the basic infrastructure would take to set up, so maybe 1 month is not enough. But it would be good to soon have some initial outreach timings from them.

    I would also hope it will all be done within the neurological classification, but I cannot imagine that with the above statement they could be daft enough to still try and do it within mental health.

    I would think, given that we need to foster positive outcomes wherever we can, we need to segregate out this new forthcoming review from the existing one in terms of our relations with Cochrane, and see if it really can be a new start for all concerned. By all means still lambaste the existing one for the tripe that it is. But track and positively engage with the new review and its new process starting with a clean slate, hopefully having much less need to lambaste it, though if that is what it needs then so be it.

    Cochrane’s Editor-in-Chief does seem to want to reboot the whole thing, and I think we should positively support that if it truly is her intent.

    Hopefully this might be the beginning of the end of the old BPS empire within Cochrane, even if only the first few µs.

    @dave30th, @Jonathan Edwards
     
    JaneL, Simon M, Ravn and 20 others like this.
  17. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    3,097
    Likes Received:
    23,601
    Location:
    Canada
    What does that say about the numerous research currently under way from the usual suspects? Most of those trials and studies are roughly on the same model, methodology and premise as the papers that went into the review.

    Schrodinger's research: it doesn't exist until it gives the right answer.
     
    JaneL, Ravn, WillowJ and 9 others like this.
  18. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    3,097
    Likes Received:
    23,601
    Location:
    Canada
    It would be devastating to IAPT and the various MUS/FND/CSS/PPS/BDS/BSS/HTML efforts under way. There is a lot of sunk cost into those. Cochrane caved to politics, plain and simple.
     
    JaneL, obeat, Ravn and 9 others like this.
  19. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    3,097
    Likes Received:
    23,601
    Location:
    Canada
    Checks calendar

    Uh. Weird. Looks like the calendar on my PC is broken. Same with all the ones online. Anyone has the same problem?
     
    JaneL, Ravn, BruceInOz and 9 others like this.
  20. Wonko

    Wonko Senior Member (Voting Rights)

    Messages:
    3,245
    Likes Received:
    23,744
    Location:
    UK
    It's only 1441 AH, they have over 500 years left to think about it, have some patience.:p
     
    JaneL, Ravn, alktipping and 8 others like this.

Share This Page