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Psychiatric disorders and the onset of self-reported fibromyalgia and chronic fatigue syndrome: The lifelines cohort study 2023 Creed

Discussion in 'Psychosomatic research - ME/CFS and Long Covid' started by Sly Saint, Apr 10, 2023.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Introduction: This study aimed to assess whether psychiatric disorders predict the onset of fibromyalgia and chronic fatigue syndrome (CFS) which develop in the presence of pre-existing muscle pain or fatigue.

    Methods: The population-based Lifelines cohort study included 148,614 adults with relevant data for the fibromyalgia study and 136,423 for the CFS study. Participants with prior self-reported fibromyalgia (or CFS) at baseline were excluded from the relevant analysis. At follow-up (mean 2.4 years), new onsets of each syndrome were identified by self-report. Logistic regression was used to identify which of the baseline variables predicted new onsets of each syndrome. The total number of psychiatric disorders (depression, anxiety, burnout, panic disorder, social phobia, agoraphobia, obsessive–compulsive, and eating disorders) was used as a predictor. Prior to the analyses the samples were divided into those with and without marked muscle pain (for fibromyalgia analysis) or persistent fatigue (for CFS).

    Results: During follow-up, there were 685/136,423 (0.5%) new onsets of self-reported FM in participants without marked muscle pain and 281/7481 (3.75%) in those with such pain; for CFS it was 292/124,223 (0.2%) for those without and 192/10,025 (1.9%) for those with baseline fatigue. In both univariate and logistic regression analyses of participants with prior persistent fatigue psychiatric disorder was clearly associated with onset of CFS. This was not so for onset of fibromyalgia in participants with prior muscle pain.

    Discussion: Although psychiatric disorders did not predict self-reported fibromyalgia or CFS in participants free of pain or fatigue at baseline, in this study psychiatric disorder did predict self-reported CFS in the presence of pre-existing fatigue. Progress in understanding the etiology of these disorders may require studying separately onsets with and without pre-existing key symptoms.

    https://www.frontiersin.org/articles/10.3389/fpsyt.2023.1120250/full
     
  2. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Seems a bit odd to me that this paper only has one author and the author doesn't even live in the Netherlands.
     
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  3. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Yes, odd.

    Acknowledgments
    "This study was performed using data from the Lifelines project, University of Groningen, Netherlands. It was only possible with the help and co-operation of the Lifelines management staff and Judith Rosmalen, Rei Monden, and Klaas Wardenaar of University Medical Center Groningen, who worked on the data for a previous paper.

    [...]

    "The author wishes to acknowledge the services of the Lifelines Cohort study and all the study participants."
     
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  4. Andy

    Andy Committee Member

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    He has been a co-author on several recent papers based on the Lifelines data.

    Publications list, https://loop.frontiersin.org/people/1497122/publications

    ETA: That is only a partial list, here is his Researchgate publication list, https://www.researchgate.net/profile/Francis-Creed, which shows far more publications, many of which are about somatoform disorders and somatic syndromes.
     
    Last edited: Apr 10, 2023
  5. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    A forum search shows also this co-authorship with Peter White:

     
  6. Hutan

    Hutan Moderator Staff Member

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    Just looking at the first paragraph of the introduction, it is hard to imagine how more faulty assumptions could have been packed into it:

    The author is already on shaky ground. We have seen studies here that suggest that the incidence of depression and anxiety aren't markedly different to the incidence in other chronic disease populations, and sometimes aren't even different to prevailing general population rates. Furthermore, there is selectivity in not noting likely reasons for depression and anxiety diagnoses being more prevalent in people diagnosed with these conditions, that is:

    1. that these illnesses are life-changing and horrible, and are misunderstood and carry enormous amounts of stigma thanks largely to BPS proponents, and that that stigma can make it very hard to get financial and practical help and emotional support, and that all this surely contributes to rates of depression and anxiety.

    2. measures of depression and anxiety that are given typically include questions about physical symptoms and current activity, so that anyone with a fatiguing illness and/or chronic pain and who is no longer able to do the things they used to enjoy doing will score poorly.

    3. both patients and doctors may assume when the patient has trouble getting out of bed and feels exhausted, sad and worried that the patient has depression and/or anxiety. The doctor may not believe that CFS (ME/CFS) or fibromyalgia are useful diagnoses of real disease entities. There may be a lack of conscientiousness in the diagnosis process, with a well-worn path from 'woman presents with fatigue and worry' to 'diagnose depression and anxiety; prescribe anti-depressants and suggest a mindfulness course'.

    These two options (depression and anxiety as part of the illness, preceding it; and depression and anxiety secondary to the difficulties of the illness) are not the only options. Misdiagnosis of all of the mentioned conditions is a real possibility, and indeed the medical condition the person has might even be something else entirely. The timing of the diagnosis of depression and anxiety relative to the timing of fibromyalgia or CFS brings little clarity to the 'cause or effect' question. The fact that a diagnosis of depression precedes a diagnosis of CFS does not mean that depression actually existed prior to the onset of CFS. The underlying premise of this study is weak.


    IBS, fibromyalgia and CFS are all lumped into the 'functional somatic symptom' bucket.
     
  7. Hutan

    Hutan Moderator Staff Member

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    This paragraph (still in the Introduction) starts by noting another study that contributes to the fact that, despite the problems I noted above, the literature about links between depression and anxiety and CFS and fibromyalgia actually isn't very compelling. That is, the 'most recent prospective cohort study failed to identify psychiatric disorder as a predictor of self-reported fibromyalgia or CFS'. You can almost hear the hand-wringing. 'How can this possibly be? What other way can we analyse things so that we get the answer we know must be true - that these people have psychiatric problems which cause their somatic symptoms?'

    Creed then suggests that a reason for the lack of a causal association between depression/anxiety and CFS/fibromyalgia in that particular study is that it excluded people who had symptoms of CFS and fibromyalgia at baseline, but who weren't self-reporting as having those illnesses. This resulted in lower numbers of people with the illnesses, presumably decreasing the statistical power, and making associations not statistically significant. So, Creed wants to "assess whether psychiatric disorders predicted the onset of fibromyalgia and CFS in these participants who were excluded from the previous analysis because of their muscle pain or fatigue at baseline." But surely this makes no sense? If someone already has the symptoms of a disease at baseline, how could a later diagnosis of depression or anxiety possibly predict onset of the disease?
     
  8. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    I haven't checked the DSM, whatever # it is now, but is "burnout" actually listed as such, and cataloged as a psychiatric disorder?

    Self-reported "cfs" is neither CFS, nor ME, until diagnosed as such using biomedical case definitions: the Canadian Consensus Criteria or the International Consensus Criteria. Same goes for self-reported FM.

    Diagnostic criteria for FM and CFS? I just skimmed down to the "Stress" section, but didn't see any case definitions.

    I don't buy the predictive power in the Discussion. People may feel depressed, frustrated, concerned etc., as a consequence of feeling chronically unwell. Emotional or mental health upset is a logical reaction to chronic illness. Apparently, logical reactions are not something BPS models consider.
     
  9. rvallee

    rvallee Senior Member (Voting Rights)

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    First, what is a psychiatric disorder would have to be defined. And it isn't, it's arbitrary and capricious. It invariably has the meaning of having to do with the brain, the organ itself, or basically anything and everything, or even the blatant logical fallacy of "we don't know what this is, therefore it is psychiatric", which has long been abused. The very concept has no coherent meaning that can be used here.

    If one simply takes the idea that fitting some vague criteria is all it takes, then clearly the concept itself should be rejected, as medicine rejects this approach with chronic illness, unless it's convenient. This is as incoherent as saying "I don't want lasagna, I hate pasta, I want macaroni".

    Because the way most of those "disorders" are evaluated is usually through symptoms, which makes it entirely circular. This says far more about psychiatry, and little of it good, and basically nothing about the patients.

    We all know that the depression label is applied here simply because fatigue is automatically attributed to it. It means nothing other than that the entire labeling process is flawed beyond any possibility of repair.

    Plus, how does one even differentiate from the mass of physicians, and psychiatrists, who consider FM and ME to be psychiatric? In those cases they will have recorded those, but not as those, and instead as some BS psychiatric stuff like BDD, FND or any of the above. Change the MD and you change the label. This is not a professional process, it is simply not serious.
     
    Last edited: Apr 10, 2023
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  10. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Agreed@ Hutan. It makes no sense.

    Why are so many BPS arguments circular? They are dizzying.
     
  11. Charles B.

    Charles B. Senior Member (Voting Rights)

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    I love how functional somatic syndromes is in quotation marks later in the article. It’s almost as if we take it as a given in the introduction, and then, as the evidence shows something contrary to BPS bluster, we put it in quotes. This is in their own study mind you. So under the most favorable conditions and interpretive gymnastics, their conclusions still lack authority.
     
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  12. shak8

    shak8 Senior Member (Voting Rights)

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    Wonder at the timing of the report of anxiety and depression and mental illness in FM and ME patients in research articles.

    Do the researchers think that an episode of resolved depression or anxiety two years prior to onset of severe exhaustion or severe muscle pain constitutes an associative factor?

    To my mind, only mental disorders (and not just run of the mill anxiety or depression-lite) that are present in the year before the onset of FM and ME and currently present when the first symptom of ME or FM appear, can be judged.

    How to obtain an accurate patient history about the timing of early onset of symptoms (whether it be depression, exacerbation of mental illness, or early signs of ME or FM) is in question. Most medical records have glaring bloopers, if you're doing chart reviews for retrospective studies and think that the information within those is accurate enough for research purposes.

    And, of course most blatantly, the after-the-onset of FM and ME anxiety and depression (and/or exacerbation of pre-existing mental disorders) which are linked to the stress of having such a life-upending chronic illness, well, there is no excuse in research for confusing this issue with the issue of prior onset of mental disorders.

    Also, the existence of mental disorders in a given population is most likely yielding a variable percentage depending on who did the research and on which metric used. So, I'd like the whole issue picked up by some very smart statisticians until researchers are too embarrassed to tackle their "subject" again.

    How does this help patients?
     
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  13. alktipping

    alktipping Senior Member (Voting Rights)

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    It is never about helping patients all done solely to muddy the waters for insurance companies to deny claims while citing the papers that favour them judges it seems are incapable checking out such garbage for themselves and complainants rarely have the money for so called expert witnesses to rip this trash apart.
     
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  14. Hutan

    Hutan Moderator Staff Member

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    True. In this study, the data is from self-reporting by the patient, as well as an interview at baseline to supposedly diagnose psychiatric disorders.

    The surprising thing here is that the study failed to find any predictive power of psychiatric disorders at baseline for the onset of self-reported "fibromyalgia" or "CFS" over the following two years when people did not already have pain or fatigue They even said as much in the abstract.
    So, people who self-reported fatigue at baseline were found to both be more likely to be assessed as having a psychiatric disorder at baseline, and to self-report the onset of CFS. I can think of a couple of reasons for that:

    1. The person did in fact have ME/CFS at baseline, and the ME/CFS symptoms and possible secondary worry and sadness resulted in them being assessed as having a psychiatric disorder.

    2. The person did or didn't have ME/CFS at baseline, but the discussion in the psychiatric assessment prompted them to seek out a CFS diagnosis, or at least self-label their symptoms as CFS.

    The prevalence of CFS in the sample is 1.8% - so a lot higher than usual estimates of the prevalence of ME/CFS. Clearly there are a lot of people self-reporting CFS who wouldn't actually meet ME/CFS criteria.

    To me, just from looking at the tables, the data does seem to suggest higher levels of sadness and worry, whatever labels you want to put on those, among people self-reporting fibromyalgia and CFS (with the sadness and worry following the pain and fatigue). Perhaps that should be a focus on research - why are these people feeling bad? What can be done about their circumstances to decrease this (i.e. not just getting them to say they aren't sad or worried).
     
  15. Three Chord Monty

    Three Chord Monty Senior Member (Voting Rights)

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    Am I reading this correctly?

    Refs to 'comparable studies' are: what looks like a similar hack job by Creed; 2 studies from 2011 relating to predictors of CFS both co-authored by Peter White; and another similar fishing expedition from 2008 co-authored by Wessely. (There is one more Wessely paper referenced: "The relationship between fatigue and psychiatric disorders: evidence for the concept of neurasthenia")

    If he says so.

    The only thing I really wonder is if the reviewers had even the slightest understanding that there actually are definitions of this "CFS" entity. Either they don't know or don't care? Creed managed 5 of his own papers out of nearly 50 references, but couldn't be bothered to introduce even one case definition. It's like the Prins paper from 2001 where they trialed CBT on a cohort defined by Fukuda, but minus any of the required 4 of 8 symptoms. Which was one of the papers selected for the Cochrane review of CBT for CFS, but that's another story. I'm just a bit surprised this is still allowed to happen.
     
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  16. Hutan

    Hutan Moderator Staff Member

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    Very nice @Three Chord Monty

    Actually Creed found that, in the case of the people who had no existing fatigue or CFS at baseline (124,000 people), " psychiatric disorders" were not associated with the onset of CFS during the next 2 years or so* (292 people). Therefore, this study does not provide evidence that "anxiety and depressive disorders" might contribute to CFS development.

    *they even wrote as much in the Abstract:
    As for confirming "that only in CFS does psychiatric disorder contribute to the development of the syndrome", this study says nothing about a contribution. At best, there can be an association. Correlation is not causation or contribution.

    They found higher rates of "psychiatric disorders" in the 1983 people who reported having self-reported CFS at baseline - but, as discussed above, there are a lot of problems with the CFS self-reporting, and the diagnosis of psychiatric disorders. And, even if there truly is a higher rate of depression among people with CFS, so what? Having CFS isn't fun. It's a long way from being proof that psychiatric disorders contribute to the development of CFS. It is not right to suggest that there was such a finding to confirm, given the finding in the 124,00 people without CFS or fatigue symptoms at baseline. Not unless time does not flow in the direction I have always understood it to (i.e. from the past to the present).

    They found higher rates of "psychiatric disorders" in the people who reported having fatigue at baseline and went on to self-reported as having CFS in the subsequent two years (192/10217) than those who reported having fatigue at baseline and didn't later self-report CFS (10025/10217). But, as discussed above, there are a lot of problems with the CFS self-reporting, and the diagnosis of psychiatric disorders, and potential for the psychiatric evaluation to have affected the likelihood of subsequent self-identification with CFS. And still, there is no causation or contribution - the people reporting fatigue already had a key symptom, they just weren't calling their condition CFS. I'm surprised there isn't a stronger correlation given what we know about how symptoms of CFS can so easily be assumed to be symptoms of depression.

    This makes me want to shout at that author. He must know his data actually suggest that psychiatric disorders don't contribute to the onset of either fibromyalgia or CFS. And yet, the way he has written that Outcome frames things as the opposite. It's a bit complicated, and Creed has played on that, to spin things.

    Maybe, as someone suggested above, some researchers should get hold of the data and write a reanalysis paper.
     
    Last edited: Apr 11, 2023
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  17. Three Chord Monty

    Three Chord Monty Senior Member (Voting Rights)

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    The biggest one being that even "CFS" requires a formal diagnosis by a qualified medical professional, leading me to believe that if it's self-reported, that's...not "CFS." I mean obviously PWME unable to find a way to be diagnosed properly aren't people incapable of knowing well something's very wrong. Which is why I never understood how the CDC could claim that any sizable percentage of CFS patients haven't been diagnosed--if you get hit with Ramsay ME, unless for some reason it's absolutely impossible, how does one not do everything they possibly can to try to get a handle on this unbelievably debilitating, life-altering, physically disabling illness they just woke up with one day out of the blue? But I digress.

    Creed's doubletalk doesn't surprise me one bit. The stuff I read about him on @Dx Revision Watch blogs back around 2010 when Creed & Fink were working on BDS, SSD, and whatever else that would enable them to find a way to shoehorn FSSs like CFS into the DSM. I just find it surprising he could get something like this published anywhere but Psychological Medicine.
     
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  18. Andy

    Andy Committee Member

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    Well, it depends on how seriously they are affected, and what they are told by health professionals, and what they themselves believe about such illness. Very roughly, I had 15 years of progressively worsening symptoms before starting to seek help from the NHS, and it took another 10 years of being repeatedly fobbed off, and my symptoms continuing to worsen, before I received an official diagnosis. I would guess that it was only in the last 5 years of that period that I started to guess, and/or admit to myself, that I might have ME/CFS. I can therefore easily understand how there might be a considerable number of people with ME/CFS who are yet to get an official diagnosis.
     
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  19. Andy

    Andy Committee Member

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    And as 'luck' would have it, here are people on Twitter discussing very similar experiences.

     
  20. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Problems around understanding variation in ME are not just down to not having had PEM explained to you, though that is egregious in itself. Although I did not have a rounded concept of PEM until more than ten years into my ME, I was aware at least that over exertion was a bad thing and rest was required to get through crashes from pretty early on.

    However for me I need also to take into account a cumulative effect of food intolerances, sensory issues and orthostatic intolerance, for example doing a short amount of gardening without wearing sunglasses on a bright day will trigger PEM more readily than than the same amount of effort with sunglasses or on a cloudy day. I only became aware of my food intolerances some ten years into my ME, though in retrospect I have some indication that at least my gluten intolerance began at the same time as the onset of my ME. One problem in realising this was the overlap in symptoms between my food intolerances and my ME, but also the delayed nature of my reaction with say the effects of gluten only appearing twenty four hours after consumption.

    Although from early on in my ME I was aware than sensory over load was very distressing it was not until twenty years in that I became aware that temperature, sound, light or smells at levels below triggering distress/discomfort also contributed cumulatively to trigger PEM. Similarly though I gradually became aware that when resting, the more horizontal I was the better, I did not have a concept of orthostatic intolerance until I became aware of it on line through the ME community some twenty years into my ME. Here my orthostatic issues seem to have got worse over the course of my ME, so I can not say whether or not they were there from the start.

    This day to day variation in my health for many years seemed random and early on I was willing to accept there was a psychological/psychiatric causal component. It was only when I understood all or at least most of the contributory factors and I could begin to predict this day to day variation that I was confident that any psychological issues were a consequence rather than a contributory cause of my ME.

    Until both patients and clinicians begin understand the day to day, week to week, variation in ME and recognise the underlying patterns it is hard for many to separate the psychological and the biomedical. Managing my symptoms would have been much easier from the start if I had been provided with the concepts of PEM, sensory intolerances, orthostatic intolerance and food intolerances, but also I would have been better equipped to communicate about my condition. Also this makes a mockery of any research based on patients self reports or on medical records because many patients and many clinicians lack the basic concepts required to distinguish physical and psychological symptoms in relation to ME and presumably also to Fibromyalgia.
     
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