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Open Sweden: The role of low-grade inflammation [...] in ME/CFS, Andreasson et al - recruiting

Discussion in 'Recruitment into current ME/CFS research studies' started by mango, Dec 6, 2019.

  1. mango

    mango Senior Member (Voting Rights)

    The role of low-grade inflammation for the progress of disease in patients with myalgic encephalomyelitis/chronic fatigue syndrome ME/CFS

    Anna Andreasson, Martin Jonsjö, Linda Holmström.

    Original title in Swedish (as stated in the ethical approval application): Betydelsen av låggradig inflammation för symtoms förekomst, grad och utveckling i Myalgisk Encefalomyelit/Kroniskt trötthetssyndrom.

    Last edited by a moderator: Nov 12, 2021
    inox, Medfeb, Channa and 10 others like this.
  2. mango

    mango Senior Member (Voting Rights)

    From the ethical approval application:


    survey of the field 1.png

    survey of the field 2.png

    survey of the field 3.png

    survey of the field 4.png
    Anna H, rvallee and Andy like this.
  3. mango

    mango Senior Member (Voting Rights)

    More from the ethical approval application:

    project description.png

    project description 2.png

    data analysis.png


    (Edited to remove duplicates, sorry!)
    Last edited: Dec 7, 2019
    Hutan, Anna H, MEMarge and 1 other person like this.
  4. mango

    mango Senior Member (Voting Rights)

  5. duncan

    duncan Senior Member (Voting Rights)

    Sickness behavior.

    MEMarge, Anna H, shak8 and 2 others like this.
  6. rvallee

    rvallee Senior Member (Voting Rights)

    I'm very dubious of this. The list of other studies listed in comment #4 does not indicate even basic understanding of ME and the reliance on psychometric questionnaire is entirely superfluous, suggests typical FND crap trying to present cherry-picked correlations as significant, because science 101 is overrated, I guess.

    There is some language that seem relevant at first glance but then that's basically been the "innovation" at the center of FND: psychosomatic "medicine" that pretends it's not using the language of science but incompetently and only to "prove" predetermined conclusions. Probably best to pass and recommend against participation. Enough coddling of pointless fishing expeditions.

    I'd much rather have actual competent people who don't bother wasting parts of a study on nonsense. Irrelevant questionnaires have already proven to be utterly useless and only add a bunch of noise. It's been done to death. Enough of this. It's not yet science if you can't measure things reliably. Devise competent measurements or go home.
  7. John Mac

    John Mac Senior Member (Voting Rights)

  8. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

    I think the intention is to see whether any specific cytokines are correlated with scores of their shiny new "Sickness Behaviour" questionnaire.

    Personally, I'm a bit bored of cytokine studies, as cytokines haven't been found to be useful biomarkers for any illness, except the cytokine release syndrome (sometimes known as cytokine storm). Cytokines aren't really meant to spill over into the blood (where they are mostly useless), and so much cytokine activity during infections for example, goes undetected.
    Aside from the longitudinal aspect, there is little innovation. Perhaps we'll see a replication of increased TGF-Beta over several time periods though.
    chillier, Amw66, alktipping and 7 others like this.
  9. mango

    mango Senior Member (Voting Rights)

    I agree. I believe this is part of their efforts to try and subgroup patients by combining psychological and biological data; an intent they have previously stated in, for example, research plans submitted to the Ethical Review Authority.

    In their ACT research plan (2015) it says that the aim of evaluating symptoms in relation to psychological, neuroimmunological and endocrinological factors is to define what patient groups wiil have the best effect of ACT, and that the goal is to improve mental health, physical function (including the ability to work) and quality of life for adults with CFS.
  10. mango

    mango Senior Member (Voting Rights)

    Their web page was apparently updated in March, a Q&A has been added. Here's one of the answers:
    https://www.stressforskning.su.se/om-oss/press-nyheter/nyheter/deltagare-till-forskningsstudie-sökes-1.434261#Frågor och svar

    There's still no info about why a psychological department is doing a study like this (heavily framed as studying "the physiological causes of ME/CFS"). In the Q&A there's this wee bit at the end:
    and this:
    I can't help wondering what treatments the Stress Research Institute have in mind... Their own version of "ACT" (gradually increase activity, managing irrational fears etc) or maybe CBT? I really wish they were more transparent about the models they are using...
    Last edited: Jul 25, 2020
  11. mango

    mango Senior Member (Voting Rights)

    The webpage was updated in May 2021.

    The name of the study has apparently been changed to "the role of low-grade inflammation in long-term complicated fatigue".

    Post-COVID and utmattningssyndrom (burnout, work/stress related exhaustion syndrome; has a separate diagnostic code in Sweden, is not the same as CFS) have been added to the inclusion criteria.

    They are still looking for participants. (Not a recommendation.)
    Trish, Snow Leopard, Lindberg and 3 others like this.
  12. Anna H

    Anna H Senior Member (Voting Rights)

    Wow, so now they just lump ME/CFS, post-covid and burn-out together?
    What looked really bad to begin with now looks even worse.

    Or is it perhaps better for us that the studie refers to 'long-term complicated fatigue' instead of ME? (although ME is seemingly (mis)placed under that very MUS-sounding umbrella term.
  13. mango

    mango Senior Member (Voting Rights)

  14. mango

    mango Senior Member (Voting Rights)

    The researchers submitted an application regarding a number of changes to the study protocol in June 2021. It was approved by the Ethical Review Authority on 27 July 2021.

    The following info has been copied from the application and auto-translated.

    Some of the amendments in brief:
    • Addition of up to 150 individuals responding to questionnaires only
    • Asking participants to take part in an experiment
    • Advertising for study participants also via patient organisations and social media
    • Validate a questionnaire for acute fatigue
    • Adding a questionnaire on prevalence of neuropsychiatric symptoms
    • Broaden inclusion to patients with long-term complex fatigue [ME/CFS, burnout syndrome, post-covid-19]
    • Add a healthy control group
    • Add a comparison group of patients with rheumatic disease
    • Add a comparison group of patients with IBS
    • Add questionnaires
    • Add question if participant has had Covid-19
    Their hypothesis is still the same:

    "Our underlying hypothesis is that there are many common biopsychosocial vulnerability and perpetuating factors for fatigue, regardless of the main diagnosis of the patients. We also believe that there are subgroups that differ in terms of these factors and that are also likely to overlap between the different diagnosis groups."

    Under the heading "psychological factors", the following examples are given:

    "Mental illness (anxiety and depression), prolonged stress prior to onset, symptoms consistent with underlying undiagnosed neuropsychiatric problems, perfectionism, psychological flexibility and ability to emotionally regulate."

    Project summary, updated version
    Last edited: Nov 12, 2021
    Hutan, Snow Leopard, Anna H and 4 others like this.
  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    London, UK
    Agreed also. We could add Castleman's disease but in a way that only proves the point more.
    FMMM1, Trish, Hutan and 2 others like this.
  16. mango

    mango Senior Member (Voting Rights)

    Pretty chilling that insurance companies are funding research into psychosocial "perpetuating factors" and consequences for work capacity and sick leave... :(
    Last edited: Nov 13, 2021
    cfsandmore, chrisb, Hutan and 5 others like this.
  17. mango

    mango Senior Member (Voting Rights)

    "In total, participants are asked to answer a maximum of 200 questions in one session."

  18. Hutan

    Hutan Moderator Staff Member

    Aotearoa New Zealand
    Are the patient charities (including the Long Covid charities) able to do anything to warn people to avoid this study? It sounds like a disaster in waiting.
    Anna H, Trish, Lindberg and 2 others like this.
  19. Trish

    Trish Moderator Staff Member

    It does seem like the cytokine stuff is included to make it look like a biological study. And the diet data looks like it will be too limited to be useful. The intent is clearly to further their psychological theories. The glaring hole in this is any objective measure of activity levels or of cognitive function. For a longitudinal ME study that omission is ridiculous.
  20. CRG

    CRG Senior Member (Voting Rights)

    I'd like to see a statement of how that hypothesis meets a test of falsifiability.
    Anna H, mango, Peter Trewhitt and 5 others like this.

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