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The invisible burden of chronic fatigue in the community - a narrative review (2019), Fatt et al

Discussion in 'PsychoSocial ME/CFS Research' started by Simone, Feb 14, 2019.

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  1. Simone

    Simone Senior Member (Voting Rights)

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    New paper from Andrew Lloyd (of Dubbo studies fame and, more recently, Australia’s leading proponent of the psychosocial school).

    “The Invisible Burden of Chronic Fatigue in the Community: a Narrative Review”

    Authors: Scott Fatt, Eric Cvejic, Andrew Lloyd, Ute Vollmer-Conner & Jessica Elise Beilharz
    Publication: Current Rheumatology Reports

    ABSTRACT

    Purpose of Review
    Unexplained fatigue is commonly reported in the general population, with varying severity. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) sits at the extreme of the fatigue continuum, yet more individuals experience unexplained prolonged fatigue (1–6-month duration) or chronic fatigue (> 6 months) that, although debilitating, does not fulfil ME/CFS criteria. This review examines the empirical literature comparing symptoms for those with prolonged fatigue, chronic fatigue and ME/CFS.

    Recent Findings
    Substantial overlap of self-reported psychological, physical and functional impairments exists between chronic fatigue and ME/CFS. The conversion rate from prolonged or chronic fatigue to ME/CFS is not understood. Current research has failed to uncover factors accounting for differences in fatigue trajectories, nor incorporate comprehensive, longitudinal assessments extending beyond self-reported symptoms.

    Summary
    Distinguishing factors between prolonged fatigue, chronic fatigue and ME/CFS remain poorly understood, highlighting a need for longitudinal studies integrating biopsychosocial approaches to inform early management and targeted rehabilitation strategies.

    This article is paywalled: https://link.springer.com/article/10.1007/s11926-019-0804-2
     
  2. Andy

    Andy Committee Member & Outreach

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  3. Amw66

    Amw66 Senior Member (Voting Rights)

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    Given where US has moved re Oxford, CBT and GET, this is creating an evidence base for repositioning to maintain therapy / treatment significance.
     
  4. Peter

    Peter Senior Member (Voting Rights)

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    It fails from the start labeling ME as some kind of fatigue? From there on everything sort of fails.

    It is not true that we’ve had “decades of dedicated research into the pathophysiology of ME/CFS”. We have had some dedicated people, yes, but no funding, no way near what is needed for substantial studies. So reasons for not detecting pathophysiology are logical and completely understandable, not that “mysterious”.

    What one at best could appreciate, is the methodology of separating “fatigue” into different spectrums. That’s a very small achievement, but at least better than “fatigue” is “fatigue”. It may have some theoretical value, but the talk of prolonged fatigue, chronic fatigue and ME/CFS are based on a lot of speculation. No mention of lack of knowledge in care, that result in patients getting no advice/wrong advice, pushing for way to long and those things, as a cause from what they call prolonged fatigue or chronic fatigue to full-blown ME.

    They are not naming any literature or studies of all the things that actually are discovered. They simply states that we have to rely on self-report measures of symptoms, «.......problematic, given the well-documented discrepancies between subjectively reported and objective performance measures in patient populations generally and in patients with ME/CFS in particular”. Hmmm?

    Then close to some sort of conclusion that ME/CFS is caused by autonomic dysfunctions. But this is moderated when “It would be of value to know if the identified biological correlates in ME/CFS are linked to the etiology of the disorder and thus detectable early and across the fatigue continuum, or whether these emerge as a secondary response to suffering from a debilitating condition over long periods”

    “CBT and GET have empirical support for symptom reduction, yet these interventions typically show only moderate effect sizes with the average success rate rarely exceeding 30%. With such limited response rates in long-term sufferers, these “best practice” techniques might be more useful in the early rehabilitation of those with chronic fatigue, potentially reducing progression to a more severe condition”.

    Where is the logic in this?

    Not surprised but disappointing paper. Looking like just messing it up when lumping all kinds of fatigue in one bowl. Now kind of proposing to prioritize prolonged fatigue and chronic fatigue and putting ME even further behind.
     
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  5. EzzieD

    EzzieD Senior Member (Voting Rights)

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    So ironic how Lloyd, self-proclaimed 'Australia's Leading Light' as regards ME/CFS, demonstrates lack of any understanding at all of what ME/CFS is. (Hint: Dr Lloyd, ME is not 'the extreme end of the fatigue continuum', it's something else entirely, something much, much worse than that. Why don't you know this, what with being the Leading Light and all?)
     
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  6. pteropus

    pteropus Senior Member (Voting Rights)

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    the Australian National Health and Medical Research Council are concluding an advisory committee on ME & CFS.

    Lloyd was one of the committee members, and has done some research on fatigue in Hepatitis C, but very little on ME/cfs (by his own estimate, <5% of his time).

    Perhaps this paper is an attempt to claim expertise, then divert ME/cfs research funding to expand his own empire.
     
  7. Peter

    Peter Senior Member (Voting Rights)

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    It is scary that you can get it so totally wrong, - ME = some sort of fatigue? Its a little like approaching a dart board, turn away 180, then throwing..The world of different sorts of fatigue has very little to do with ME. The approach is at best an act of negligence.

    My speculation is as follows. Fatigue is not a «valid» term in moderne medicine. At best medicine can acknowledge that a patient can experience some of this «unknown" after treatment. Deal with it. We have cured you, at least given our bet shot, we’re done here. That is kind of hard, but ok, it's a though world. But it says something about the attitudes in medicine towards this that probably is pretty common.

    So you have this «fatigue", ranging from the normal thing to some kind of chronic fatigue at the other end, post fatigue from cancer treatment and alike. Ok. It is difficult, and dosent help us at all, but I think the only positive thing to take away from this paper is a willingness to classify «fatigue». And to Lloyd et al: fatigue is a symptom of ME, often a minor problem, at least dealt with that way.

    Where it all goes completely wrong in relation to ME, is when these people who have no idea of what ME actually is, draws an analogy from the worst sort of chronic fatigue and just says «that’s ME». You’ve literally missed bulls eye by a mile, you’ve wasted a whole lot of funding cause of fixed attitudes.Its politics and ideology and dosent move the world in the right direction.
     
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  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Apart from posts on this forum I don't know much about him but from a brief bit of searching it appears he is a bit like Carmine Pariante, ie following the Psychoneuroimmunology model. Pariantes recent study with interferon Alpha on Hep-c patients was 'recognised' as research into CFS/ME even tho they were only the controls. However, the funding went towards his main research project into depression and inflammation.
    https://www.s4me.info/threads/persi...-2018-pariante-et-al.7050/page-22#post-131811
     
  9. Mithriel

    Mithriel Senior Member (Voting Rights)

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    Way back before I had the internet (and CFS was barely a gleam in its father's eye) I would get sent reports about the ME world. I was horrified by the things written by a certain S. Wessely but he was backed up by the same sort of shocking tosh from a certain Lloyd and Hickie who had outrageous things to say about beliefs and psychological therapies.

    He has been abusing ME patients for decades.
     
  10. Simone

    Simone Senior Member (Voting Rights)

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    Andrew Lloyd uses the central sensitisation model to underpin his use of GET/CBT.
     
  11. Simone

    Simone Senior Member (Voting Rights)

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    Andrew Lloyd is also part of COFFI (along with people like Esther Crawley, Rona Moss-Morris and Peter White). He is trying to get funding for “fatigue” research for this group.

    https://internationalcoffi.wordpress.com/
     
  12. Cheshire

    Cheshire Moderator Staff Member

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    Despite having no choice but admitting the limitation of CBT/GET, the BPS proponents never question their necessity, it's because "the therapies are not given soon enough, or not in the correct way, or not enough sessions, or patients aren't motivated", and so on.
    That never ceases to astonish me. And the irony is that this kind of rhetoric is seen as a sign of pseudo science by sceptics when they refer to homeopathy, or psychoanalysis. Yet none of them says anything against it when it is raised about ME and rush to the "deluded patients refusing to admit they have a psyciatric disorder" narrative.
     
  13. rvallee

    rvallee Senior Member (Voting Rights)

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    Crazy idea but: let's not allow people who have no idea what they're talking about self-proclaim themselves to be experts when they can't even properly describe the problem they are claiming to be experts in.

    MYAlgIc EnCepHAloMYELitiS/ChrOnIC fAtIGue sYnDrOMe (Me/CfS) sitS At The EXtREme oF ThE faTIguE cOnTInuUM
    [​IMG]

    Idiot. Lethal idiot.
     
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  14. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Here is the list of names attached to COFFI: https://internationalcoffi.wordpress.com/researchers/
    The list includes a few names from the US.

    Time maybe to have a closer look and shed a little light on their dark deeds.

    Central sensitization is discussed here: https://www.s4me.info/threads/central-sensitization-a-matter-of-concern.5346/

    Interestingly when I googled central sensitization alone and with the terms theoretical model and incorrect absolutely nothing turned up to critique the model. As far as the internet's concerned this is a legitimate concept.
     
  15. Ravn

    Ravn Senior Member (Voting Rights)

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    This.
    The draft report of that Committee with Lloyd on it is currently out for consultation and discussed here: https://www.s4me.info/threads/australia’s-nhmrc-me-cfs-advisory-committee-draft-report-released-for-public-consultation.7319/

    It's quite a good report overall but somebody on the committee - your guess is as good as mine - felt obliged to add this special note:
    Still a few days to make a submission to tell them what you think of that special note, and the rest of the report of course (International submissions welcome). Deadline is Monday February 18, 2019 (Australian time). A good opportunity to minimise the influence of Lloyd and his like have on ME in Australia.
     
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  16. rvallee

    rvallee Senior Member (Voting Rights)

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    Last meeting in 2015. Low energy. Sad.
     
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  17. Simone

    Simone Senior Member (Voting Rights)

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    Lloyd has been skating under the radar. One issue we have here is that, because he doesn’t follow the deconditioning model, his work remains unscathed by critiques of the deconditioning model. He is distancing himself and his work from PACE (his clinic emphasises that their program is not PACE-style GET, though they aren’t ever very clear about the ways in which it differs from PACE). The central sensitisation model has largely been ignored by advocates, but Lloyd has been quietly working to position himself for a post-PACE world for a number of years.

    He regularly refers to ME/CFS as “chronic fatigue” or “fatigue states” in his papers, though this one is the most overt. But he is pushing to try to get COFFI off the ground. On the surface, it looks reasonable: biological samples, doing things like GWAS etc, but it’s all with this same framework of a fatigue continuum and trying to understand why some people end up with more severe fatigue than others. But that in turn often ends up with psychological factors like personality or behaviour. Plus it’s an international group of experts, and collaboration is the buzz word for funding bodies these days.

    The COFFI group has not been doing much recently, but Lloyd is looking for ways to kick start them.
     
  18. Sean

    Sean Senior Member (Voting Rights)

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    Last edited: Feb 15, 2019
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  19. Ruth

    Ruth Established Member (Voting Rights)

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    Very good point to give feedback on. The difference between 'ME/CFS', which is what the report is meant to be making recommendations on, and fatigue, chronic fatigue, MUS, etc etc etc is a central issue the report has not addressed. Factors such as unique PEM symptoms are strong arguments.
    This paper positions Lloyd very clearly and will be influential. Perfect timing. Noone should underestimate him.
     
    Last edited: Feb 15, 2019
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  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I was using the comparison with Pariante in relation to showing how these people get classed as 'experts' in ME/CFS.

    But I also found this which is from 2010
    https://www.adinstruments.com/blog/many-faces-psychophysiology
     
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