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In progress: A systematic review & meta analysis of the incidence of, and risk markers for, [CFS] and [ME] in population studies, 2020, White

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Andy, Jun 1, 2020.

  1. Andy

    Andy Committee Member

    Hampshire, UK
    Full title: A systematic review and meta analysis of the incidence of, and risk markers for, chronic fatigue syndrome and myalgic encephalomyelitis in population studies of adults
    Authors: White and Creed
    Simone, Sly Saint, Forbin and 5 others like this.
  2. Andy

    Andy Committee Member

    Hampshire, UK
    Amw66, Lidia, Cheshire and 12 others like this.
  3. Trish

    Trish Moderator Staff Member

    Why now? Perhaps to give them something to do during the pandemic that doesn't require meeting any patients. Can all be done on line from home.

    My main concern is whether there are actually any reputable studies of predisposing factors or what they call 'risk markers'? Or will they cobble together a few dubious studies that purport to suggest psychological and sociological 'causes'.
    Cheshire, Simone, EzzieD and 9 others like this.
  4. Medfeb

    Medfeb Senior Member (Voting Rights)

    Thanks for posting. Just saw this. WTF? Looks like a nightmare in the making. Or maybe I am just too cynical?

    "1. What is the incidence of chronic fatigue syndrome in population based cohorts of adults?
    2. What are the risk markers for chronic fatigue syndrome in population based cohorts of adults?
    3. What are the risk markers for chronic fatigue syndrome following corroborated infections?"

    Studies included for first two reviews if
    a) a population-based cohort was studied prospectively
    b) dx recorded on medical register or by self report or according to a dx criteria - and a dx of CFS-like is okay
    c) CFS not preonset but fatigue preonset okay
    d) case control okay if prospective data collection before dx

    Condition being studied
    "Chronic fatigue syndrome, myalgic encephalomyelitis and synonyms. For the purposes of this form, we will refer to CFS as an umbrella term for all these diagnostic labels"​
    Labels include "fatigue syndrome, chronic", “Chronic fatigue disorder*”, “fatigue syndrome”, “post viral fatigue*” , “postviral fatigue*”, “postinfectious fatigue*”, “post infectious fatigue*” , “Myalgic Encephal*”, “Royal Free disease”, “chronic fatigue immune dysfunction syndrome”, “chronic Epstein-Barr virus syndrome”, “chronic mononucleosis-like syndrome”, “low natural killer cell syndrome” or “systemic exertion intolerance disease”

    Primary outcome
    Q1 - a dx of CFS or an accepted synonym for the review of incidence.
    Q2 and Q3 - risk markers will include demographic, biological, psychological, and social factors; any measurable factor that is found to increase (or diminish) the risk of developing CFS.
    Q3 - In the third review (post-infectious), a diagnosis of CFS will be accepted when recorded six months (or more) after the onset of infection.

    Edited to add:
    Subgroup analysis

    By definition
    - definitions include: Holmes et al, 1988, CDC criteria (Fukuda et al, 1994; Reeves et al, 2003), Oxford (Sharpe et al, 1991), Australian criteria (Lloyd et al, 1990), International and Canadian criteria (Carruthers et al, 2003, 2011), myalgic encephalomyelitis (National Taskforce, 1994), post-viral fatigue syndrome (Ho Yen, 1990), epidemiological definition (Osoba et al, 2007), NICE (2007), and systemic exertion intolerance disease (IoM, 2015).

    By method of dx - self-report, questionnaire, interviews (with/without medical tests) and diagnoses made by a medical practitioner.

    Anticipated completion
    Nov 2020
    Last edited: Jun 1, 2020
    Simone, Denise, MEMarge and 6 others like this.
  5. InitialConditions

    InitialConditions Senior Member (Voting Rights)

    North-West England
    I hate these sytematic reviews. They're just so lazy and unnecessary. Why do we need another review?
    Simone, EzzieD, MEMarge and 7 others like this.
  6. Amw66

    Amw66 Senior Member (Voting Rights)

    The fruit bowl approach again.
    Words fail me .
    Simone, MEMarge, Starlight and 4 others like this.
  7. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    I'd say there's a good/very good chance that Peter White will use his own study from the Lancet. They attempted to measure their fitness after they became ill and made inferences about the pre-illness fitness levels!

    I discuss problems with it in these comments:


  8. InitialConditions

    InitialConditions Senior Member (Voting Rights)

    North-West England
    Francis Creed (University of Manchester) has edited a book on Medically Unexplained Symptoms with Per Fink
    Simone, Sly Saint, Sean and 5 others like this.
  9. InitialConditions

    InitialConditions Senior Member (Voting Rights)

    North-West England
    Sean, Webdog, Amw66 and 1 other person like this.
  10. rvallee

    rvallee Senior Member (Voting Rights)

    Oof. This is especially bad. Some of the graphics make me think of conspiracy theorists putting random labels and arrows on various concepts and pretending it means something. Seriously you have to look at it to appreciate it in full. It mostly boils down to cheap philosophy over the duality of mind-body. Same as in the early days of psychosomatics, the same nonsense being argued in a loop.

    He defines "somatization" as "high number of symptoms" and that's just a special kind of ridiculous. I love that it has a few bits of imaginary quotes from patients that are so clearly made-up, instead reflecting their own personal opinions, it would be hilarious if it wasn't deadly.

    I can't go through this, it's 183 pages of mediocrity and circular reasoning. It belongs in a museum of how not to science. He seems to either have a weird fetish for Wessely or Wessely was in the audience that day and he was trying to impress him or something. Weird.

    Anyway those are the delusional ramblings of very sick people, which is seriously ironic.
    EzzieD, JemPD, Medfeb and 6 others like this.
  11. cassava7

    cassava7 Senior Member (Voting Rights)


    They say there will be a subset analysis based on different diagnostic criteria, but they could very well just lump IOM, CCC or ICC with other criteria that do not require PEM.

    Here is a nice one too:
    And yet:
    But it's not like there could be any rating discrepancy on White's papers between White and Creed anyway.

    Just quoting from @Hilda Bastian's latest blog post about bias in systematic reviews:
    Last edited: Jun 1, 2020
    rvallee, Sean, Andy and 2 others like this.
  12. NelliePledge

    NelliePledge Moderator Staff Member

    UK West Midlands
    So much for retirement
    EzzieD, MEMarge, Sly Saint and 7 others like this.
  13. Hutan

    Hutan Moderator Staff Member

    Aotearoa New Zealand
    The 2019 Cvejic/Hickie paper looks to have been made expressly for the review. Discussed here:
    Contribution of individual psychological and psychosocial factors, Dubbo Infection Outcomes Study, 2019, Cvejic, Hickie et al

    The findings from the Dubbo study were that no personality/psychological findings predicted development of CFS. This 2019 paper worked with the same data but spun it differently. There was still no evidence for personality factors being of significance, but that's not the message you get from the abstract. It very definitely needs to be challenged, especially as it will no doubt be rolled into this "review" as another data point confirming the planned conclusion.
    Last edited: Jun 1, 2020
    EzzieD, spinoza577, Forbin and 6 others like this.
  14. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

    Except for the EBV-studies, there probably is no research on risk markers for CFS or ME.

    I only know of studies that used longitudinal data from other research (that wasn't interested in CFS and focused on other things). So these studies tend to use some unrelated symptom questionnaires to reconstruct a CFS-like illness or in best case scenario they asked the patients in those longitudinal studies whether they had CFS (usually more than 1% says yes, which indicates this probably is an overestimate).

    It is possible that they will find that less activity will lead to a higher chance of developing CFS, partly because a CFS diagnosis often comes after many years of being ill and undiagnosed or because lower activity levels might predispose to other illnesses that might resemble CFS (atypical depression, sleep disorders, obesity etc.) if patients don't get a thorough clinical examination.
    Grigor, spinoza577, Obermann and 4 others like this.
  15. Dolphin

    Dolphin Senior Member (Voting Rights)

    This wording always frustrates me. Both in the early 2000's and over 10 years later he was a chief medical officer and very likely still is now (I saw someone else describe themselves as a senior medical officer in the same company showing the significance of being a chief medical officer). I don't think he has ever said he is a chief medical officer in any of his conflicts of interest statements.
    Last edited: Jun 1, 2020
  16. Medfeb

    Medfeb Senior Member (Voting Rights)

    What about this?

    I don't quite understand the "onset" criteria in the review for the types of studies to be included but CDC did a population study in the mid 2000s that found childhood trauma increased risk of CFS:
    "Individuals with CFS reported significantly higher levels of childhood trauma and psychopathological symptoms than control subjects. Exposure to childhood trauma was associated with a 6-fold increased risk of CFS." (Heim et al, Childhood Trauma and Risk for Chronic Fatigue Syndrome, 2009)

    Last edited: Jun 2, 2020
    spinoza577 and Forbin like this.
  17. Forbin

    Forbin Senior Member (Voting Rights)

    The highly publicized 2009 Reeves CDC study* used the Childhood Trauma Questionnaire (CTQ). This questionnaire measures severely traumatic childhood events in six categories.
    • Physical abuse
    • Sexual abuse
    • Emotional abuse
    • Physical neglect
    • Emotional neglect
    I've wondered if one possible explanation for patients scoring higher than controls might simply be the deeply personal nature of these questions. One might have to be highly motivated to answer these questions honestly if they applied to oneself. Positive results could simply reflect the fact that people desperate to find a "cause" for a harrowing and unexplained illness are simply more motivated to answer the questions honestly than are controls.

    *"Childhood trauma and risk for chronic fatigue syndrome: association with neuroendocrine dysfunction."
    Snowdrop, spinoza577, lycaena and 4 others like this.
  18. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Questionnaire self-reported childhood trauma is unreliable. I can't recall the details but I think in one study of depression it was found to not correlate with recorded events and (in another study?) the association (nearly?) disappeared when socioeconomic factors were controlled for. That suggests the possibility that childhood trauma is first of all overestimated due to unreliable methodology, and second not an important cause of chronic health problems later in life (rather, growing up in poverty and deprivation will "cause" both childhood trauma and later health problems).

    What I think is happening that being in a poor mood makes past problems seem much worse than they were and people are possibly biased towards this interpretation because it has been repeatedly suggested to them by society that childhood trauma is the cause of their problems.
  19. Sean

    Sean Moderator Staff Member

    And vice-versa. If your life has gone well, then you might tend to downplay or even forget past troubles.

    This is a huge problem with these post-hoc studies.
    EzzieD, JemPD, rvallee and 4 others like this.
  20. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

    Yes, participation biases, a desire to please the investigators, and the fact that this is not an unheard of explanation can lead to an exaggeration of questionnaire reports.
    EzzieD, Sean, Forbin and 2 others like this.

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