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Impact of Life Stressors on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Symptoms: An Australian Longitudinal Study, 2021, Balinas,Staines et al

Discussion in 'PsychoSocial ME/CFS Research' started by Sly Saint, Oct 11, 2021.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Abstract
    (1) Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, multifaceted illness. The pathomechanism, severity and progression of this illness is still being investigated. Stressors have been implicated in symptom exacerbation for ME/CFS, however, there is limited information for an Australian ME/CFS cohort. The aim of this study was to assess the potential effect of life stressors including changes in work, income, or family scenario on symptom severity in an Australian ME/CFS cohort over five months;

    (2) Methods: Australian residents with ME/CFS responded to questions relating to work, income, living arrangement, access to healthcare and support services as well as symptoms experienced;

    (3) Results: thirty-six ME/CFS patients (age: 41.25 ± 12.14) completed all questionnaires (response rate 83.7%). Muscle pain and weakness, orthostatic intolerance and intolerance to extreme temperatures were experienced and fluctuated over time. Sleep disturbances were likely to present as severe. Work and household income were associated with worsened cognitive, gastrointestinal, body pain and sleep symptoms. Increased access to healthcare services was associated with improved symptom presentation;

    (4) Conclusions: life stressors such as work and financial disruptions may significantly contribute to exacerbation of ME/CFS symptoms. Access to support services correlates with lower symptom scores.

    https://www.mdpi.com/1660-4601/18/20/10614/htm
     
    sebaaa, Hutan, DokaGirl and 7 others like this.
  2. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    To conclude that ‘life stressors’ of themselves are significant contributors to symptom exacerbation you need to be able to distinguish between them as sources of stress and as unavoidably requiring higher levels of activity/exertion.

    ‘Life stressors’ almost invariably demand significant increases in activity. That is not to say that emotional components may not have an impact, just that this research can not say what is due to activity levels and what due to any stressfulness involved.
     
    sebaaa, Helene, alktipping and 12 others like this.
  3. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    The study included only 36 patients through online advertisement recruitment.

    They say it is a longitudinal study but it had a time period of only 5 months.

    They then looked at correlations of answers filled in on online questionnaires.

    The correlations between symptoms and financial and work-related parameters are not reported in the paper itself, only in the supplementary material (table 9). They aren't particularly high or notable.

    So I'm afraid this study doesn't tell us very much.
     
  4. rvallee

    rvallee Senior Member (Voting Rights)

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    Those are the same people who genuinely see nothing wrong with telling people to lift themselves by their own bootstraps, uh? Is it, what, impossible for them to understand that those are consequences of the disease and that they are literally arguing that the consequences are the cause?

    Clearly rain causes clouds. You can tell by the way they are always correlated. I am seriously out of swear words for this continuing failure.
     
  5. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    1,285
    Yea addressing the consequences of ME/CFS, e.g. disabling fatigue resulting in financial stress, may improve the quality of your life but it isn't going to treat your ME/CFS.
     
    Perrier, Helene, alktipping and 3 others like this.
  6. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Have to mull this over for a while. Maybe the researchers were just saying stress makes ME worse. I know it does with me.

    This area of discussion is always a bit of a minefield as far as I'm concerned.

    Interesting to note, Don Staines is one of the authors of the International Consensus Criteria for ME.
     
    Helene, FMMM1, Barry and 2 others like this.
  7. Hutan

    Hutan Moderator Staff Member

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    This is by the Griffith NCNED team. We've, I think reasonably, criticised them for making their research seem more important and more conclusive than it is. However, they have advocated for the medical nature of ME/CFS, and have strongly advocated against GET.

    I think, without having read the paper yet, that what they are saying here is that having to keep working, and having to cope with a difficult living situations makes ME/CFS worse. I expect they were expecting their research to be welcomed as helping to provide evidence for people with ME/CFS wanting to show that continuing to work is harming them, and helping to provide evidence in support of access to specialist medical services.

    It's just tracking what is happening during a 5 month period. So, it's not the type of study that tries to draw lines between childhood trauma and ME/CFS incidence.

    It could have been written much more clearly. Starting with 'ME/CFS is a complex multi-faceted illness' is not helpful at all.
     
  8. Hutan

    Hutan Moderator Staff Member

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    Why would they go with PENE? PEM is the standard term. We don't know that it is neuroimmune exhaustion. And it's ridiculous to say that PENE is not relieved by rest. That makes it sound as though it doesn't matter whether you lie down or keep walking about, in terms of how quickly PENE passes. When, of course, rest is essential.

    This has the feeling of a paper written by someone who doesn't know ME/CFS very well, rather than co-authored by a team that has been working on ME/CFS for a long time, using a large proportion of the scarce funds available for ME/CFS research in Australia.
     
    DokaGirl, Helene, alktipping and 4 others like this.
  9. Hutan

    Hutan Moderator Staff Member

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    I agree with Michiel. I'd go further to say that this study is a bit of a mess and could be quoted against people with ME/CFS, even thought the data doesn't support much in the way of conclusions. It's pretty disappointing.
     
  10. Barry

    Barry Senior Member (Voting Rights)

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    I would also be interested to know what the physiological effects are of stress. Does heart rate go up? Does a person's body react in ways that impose a higher energy demand? Higher cognitive demand?
     
  11. rvallee

    rvallee Senior Member (Voting Rights)

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    Possibly. But we know it's always interpreted one way and one way only, so those things need to be presented very carefully, with the knowledge that any ambiguity will be abused. If Staines is an author this is probably more of an oversight, but it's really important that ME researchers get that, that words will be twisted into pretzels to fit the myths and ideology.

    It's absurd to have to guard against this but this is a formula that has worked for decades, it has to be taken into account.
     
  12. BruceInOz

    BruceInOz Senior Member (Voting Rights)

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    The ICC uses PENE and, as @DokaGirl noted, Staines is an author on both this paper and the ICC.
     
  13. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @rvallee

    Agreed, this issue should be presented carefully.
     
    alktipping and Peter Trewhitt like this.

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