The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

The aetiopathogenesis of fatigue: unpredictable, complex and persistent

Discussion in 'Latest ME/CFS Research' started by JaimeS, Feb 18, 2016.

  1. JaimeS

    JaimeS Senior Member

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    Another Julie Newton study:

    https://bmb.oxfordjournals.org/content/early/2016/02/11/bmb.ldv057.full

    The aetiopathogenesis of fatigue: unpredictable, complex and persistent
    1. James E. Clark,
    2. W. Fai Ng,
    3. Stuart Watson and
    4. Julia L. Newton,§,*
    + Author Affiliations

    1. †Institute of Neuroscience, Newcastle University, Newcastle upon Tyne, UK
    2. ‡Faculty of Medical Sciences, Institute of Cellular Medicine, Newcastle University, Clinical Academic Office, 3rd Floor, William Leech Building, Newcastle upon Tyne NE2 4HH, UK
    3. §Newcastle Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK
    1. *Correspondence address. E-mail: julia.newton@newcastle.ac.uk; julia.newton@ncl.ac.uk
    • Accepted December 24, 2015.
    Next Section
    Abstract
    Background Chronic fatigue syndrome is a common condition characterized by severe fatigue with post-exertional malaise, impaired cognitive ability, poor sleep quality, muscle pain, multi-joint pain, tender lymph nodes, sore throat or headache. Its defining symptom, fatigue is common to several diseases.

    Areas of agreement Research has established a broad picture of impairment across autonomic, endocrine and inflammatory systems though progress seems to have reached an impasse.

    Areas of controversy The absence of a clear consensus view of the pathophysiology of fatigue suggests the need to switch from a focus on abnormalities in one system to an experimental and clinical approach which integrates findings across multiple systems and their constituent parts and to consider multiple environmental factors.

    Growing points We discuss this with reference to three key factors, non-determinism, non-reductionism and self-organization and suggest that an approach based on these principles may afford a coherent explanatory framework for much of the observed phenomena in fatigue and offers promising avenues for future research.

    Areas timely for developing research By adopting this approach, the field can examine issues regarding aetiopathogenesis and treatment, with relevance for future research and clinical practice.

    Key words

    Full text is available at the link above. Shockingly, flipping through this, I see a recommendation for exercise therapy...

    -J
     
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  2. A.B.

    A.B. Senior Member

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    Proposes what is basically a biological version of the Wessely school hypothesis.

    Similarities:
    Initial trigger is irrelevant
    Holistic understanding required
    The illness state is vicious cycle of self-defeating dysregulation
    A role for behavioural interventions in breaking the dysregulation (also for drugs).

    Not impressed because it doesn't match my experience of the illness. Which is that of a fluctuating disease with periods of remission that prove the body is capable of regaining its balance.

    Trying to push through a relapse also doesn't work. Just makes it worse.
     
    Last edited: Feb 18, 2016
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  3. Valentijn

    Valentijn WE ARE KINA

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    I think this paper reflects the authors' lack of understanding about ME/CFS. "Fatigue" is sure as hell not the "cardinal symptom" of the disease, so they're going down the wrong track from the very start.

    I think Newton has good intentions, but her expertise is limited to a single symptom in ME/CFS, orthostatic intolerance. It sounds like she doesn't really understand PEM, or that we have a pathological response to any exertion.
     
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  4. Valentijn

    Valentijn WE ARE KINA

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    I think this is a case of the authors not understanding the research supporting CBT and GET, nor the essential flaws with that research.
     
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  5. lansbergen

    lansbergen Senior Member

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    I would say improvement. In the begining between flares it was not really bad but after every flare it became worse.
     
  6. A.B.

    A.B. Senior Member

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    Yes, remission is too generous.
     
  7. JaimeS

    JaimeS Senior Member

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    That part I can't disagree with. Increasingly, I get irritated by specialists who can only understand symptoms within the context of the specific body system they have studied, and seem to consider symptoms outside of their area of expertise to be unrelated to symptoms in other systems. We definitely need a more holistic understanding of the illness... but I'm not sure they mean the same thing as I do when they say that. ;)

    I'm disappointed to see Newton's name on something like this.

    -J
     
  8. Bob

    Bob

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    It seems like a load of uniformed, unhelpful and pointless waffle to me. It could even be dangerous waffle for patients as it perpetuates misinformation and conflates fatigue with CFS. Disappointed that Julie's name is attached to it.

    Perhaps this was a project for a master's degree? I can't see any other reason why someone would spend any time on it.

    The following quote outlines their central theory. I challenge anyone to find any practical meaning in this quote:
    This quote advocates for cognitive-behavioural interventions as an actual (effective) treatment for the illness itself:
     
    Last edited: Feb 18, 2016
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  9. Sasha

    Sasha Fine, thank you

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    Ref 78 is:

    1. Sharpe M,
    2. Clements A,
    3. Hawton K et al
    . Increased prolactin response to buspirone in chronic fatigue syndrome. J Affect Disorders 1996;41:71–6.
    CrossRef
    Medline
     
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  10. John Mac

    John Mac Senior Member

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    Is this really the same Julia Newton that proved we have abnormalities in our muscles when grown in the lab?
    (Rhetorical)
     
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  11. TiredSam

    TiredSam The wise nematode hibernates

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    I love a good challenge and did my very best, but I concede defeat :meh:
     
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  12. JaimeS

    JaimeS Senior Member

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    Okay, so I've read the whole thing.

    This is a heuristic model of CFS, full of philosophizing. I actually find the first half of the article interesting, although they really should have stayed away from statistical methodology in a paper that really seems to be about thinking about CFS in a more holistic manner. The statistics seem to stick out as not belonging to the rest of the narrative.

    Bias is subtly present in the manner in which emotional stressors are always listed first, and chronic infection always listed last every time HPA axis and autonomic dysfunction are mentioned.

    But it's the chart on page 7 that really, really gets me.

    1) Environmental unpredictability is listed at the top of the chart: as in, it's the primary causative agent.

    2) Next to that is written, "reinstate environmental stability (e.g. CBT, exercise therapy)." This seriously blows the mind. But then, maybe they do have a point. If I exercised, my external environment would become both stable and predictable. It would consist of my bedroom ceiling and the inside of my eyelids.

    3) Autonomic reflex unchecked, with "reinstate appropriate baroreflex control". This sort of reductive nonsense makes it sound like you reach into the patient's brain and flip a switch.

    4) "Reinstate autonomic tone". Good. I'll fill out a form and send it in, shall I? It's like renewing my driver's license, right?

    Apparent because they fudged the data TREMENDOUSLY, but let's swiftly swan past that bit.

    It's like they had an idea about discussing CFS in a broader context and then got insultingly simplistic and reductive the further on they got.

    I'm sorry if I've raised everyone's blood pressure with this one.

    -J
     
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  13. JaimeS

    JaimeS Senior Member

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    ....soooo they're citing something that's not even about CBT or GET?

    ....and that's from 1996 as though it is relevant data, still? :rofl:

    [Edit:

    I think I've used up my store of indignant surprise, though. Most people in medicine will never read this. A very small percentage will read the abstract, and maybe if we're lucky, skim the rest; and the pseudo-statistical Bayesian nonsense will make it look very official and important in that case. The point is, the authors have added one more paper to their CV. If there is no fallout from bad writing, bad logic, or irrelevant data, it makes no sense for them to stop. It's in their best interest to keep producing this drek, no matter how poorly it stands up to closer examination. ]

    -J
     
    Last edited: Feb 18, 2016
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  14. Marco

    Marco Grrrrrrr!

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    She makes some good points.

    Group comparisons do mask heterogeneity and can deliver false null results;

    Simplistic linear models are unlikely to adequately describe complex and dynamic systems;

    I also agree that the search for 'biomarkers' is likely futile.

    Why she feels the need to suggest that this schema may explain the efficacy of CBT/GET now that longer term they've been shown to have zero effect is beyond me.
     
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  15. JaimeS

    JaimeS Senior Member

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    I agree; but I'm also not sure that the mathematical models included here are necessary. On page 3 they literally use variables to 'add up' to fatigue in this manner:

    Fatigue = influence of factor A + influence of factor B...

    And then they use basic algebra to subtract to show that you can use this formula in order to figure out the influence of factor A. This presumes you know every factor that contributes to fatigue, but it also presents in mathematical form a concept that is far better suited to words.

    Then, the paper (rightfully) discredits this and presents a new formula to show that each factor should be considered related to the others rather than as an isolated variable.

    Both papers listed as the mathematical foundation for this method are from 2002 and are by the same, sole author. Just, if it's a well-accepted mathematical model in biology, could we get more than one person who says so, from a more recent publication?

    I fully admit I have bias against a paper that recommends GET for ME/CFS, especially in the current crapstorm. You really have to be out of the loop not to have noticed that the PACE trial data is highly suspect.

    -J
     
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  16. A.B.

    A.B. Senior Member

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    Another thing here is the narrative that ME/CFS requires a change in approach to be understood and solved. This might very well be true, but there is a much simpler explanation for our lack of understanding: that there is very little research being done due to lack of funding.
     
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  17. JaimeS

    JaimeS Senior Member

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    Nail, head.

    -J
     
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  18. Simon

    Simon

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    As this image of their model is available as a powerpoint slide for teaching, I'm sure reusing on a forum is fine:

    upload_2016-2-18_18-2-58.png

    "interesting". I so wish environmental unpredictability was the root problem, and CBT/GET the answer. But that's not what PACE long-term data show (regardless of tthe performance of the SMC control group, those CBT/GET patients just didn't sail off into the sunset having established environmental predicatability.
     
    Last edited: Feb 18, 2016
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  19. JaimeS

    JaimeS Senior Member

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    Yeaaaah, that was the image I was referring to. It's insultingly simplistic, and additionally, it's incorrect. :rolleyes:
     
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  20. Snowdrop

    Snowdrop Rebel without a biscuit

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    If you google Julia Newton she is attached to a University/NHS website that promotes CBT/GET as treatment for ME.
    She also doesn't study ME but fatigue.
    Also, I remember quite vividly, reading someone here on PR who said they had an appointment with JN and they where appalled when JN herself proposed some form of CBT/GET to her.

    It's hard to parse where some people -- researchers/clinicians stand sometimes. But it increasingly looks to me like JN is no friend to the ME community.

    And as mentioned, her work plays directly into the --it's biological but it can be fixed by CBT/GET. This looks like an evolution of their desperate attempt at relevance.

    I look to Staines/Marshall in Australia and the US for my hope.
     

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