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Evidence of Clinical Pathology Abnormalities in People with ME/CFS from an Analytic Cross-Section (2019) Nacul et al.

Discussion in 'ME/CFS research' started by John Mac, Apr 10, 2019.

  1. John Mac

    John Mac Senior Member (Voting Rights)

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    https://www.mdpi.com/2075-4418/9/2/41
     
    Last edited by a moderator: Apr 10, 2019
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  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Interesting but a bit difficult to interpret. Creatine kinase mirrors activity to a significant extent. Going to a disco could double it. A level of 50 is very normal, just at the lower end. Pathology is associated with raised levels and not low levels by and large.
     
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  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    :laugh: how very '70s
     
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  4. NelliePledge

    NelliePledge Moderator Staff Member

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    I blame it on the boogie
     
  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    One thing maybe to think about is that CK might be a useful indicator of recovery of regular activity. It would be much simpler than actometry and could give a guide to activity over a recent period rather as glycated Haemoglobin gives a guide to average recent blood glucose levels.

    It might not matter whether the CK was a byproduct of activity or an index of a restoration of muscle health as such. Either way it would be an objective measure of the muscle being more regularly usable.
     
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  6. hixxy

    hixxy Senior Member (Voting Rights)

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    My CK has been intermittently elevated for about 14 years now and it appears it could be related to MCAS. Anyone else had elevated CK?

    https://www.clinicaltherapeutics.com/article/S0149-2918(15)00074-0/pdf

    I need to have a muscle biopsy done but my doctor won't do it until my vitamin d levels are back in range because it can skew the results but I don't tolerate vitamin d so that's not gonna happen.
     
  7. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    That's a good idea.
     
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  8. AndyPandy

    AndyPandy Senior Member (Voting Rights)

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    My CK levels have been consistently on the low side (30s 40s) since I developed ME.
     
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  9. Barry

    Barry Senior Member (Voting Rights)

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    Interesting. I also wonder if people with mild/moderate ME might not show much discrepancy, given my wife, for instance, can actually do quite a lot, compared to so many people here. But of course if that is true, then that itself might prove some useful discriminator for severity?
     
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  10. Trish

    Trish Moderator Staff Member

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    I'm a bit puzzled, as it seems to suggest in the abstract that they took account of activity levels and still found the difference in CK levels in severe patients.

    my bolding
     
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  11. aza

    aza Established Member (Voting Rights)

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    When I had my first episode of extreme burning I was tested for CK and the levels were elevated. One test doesn't mean anything really but Rheumatologist thought it was important, so I was referred to a Neurophysiologist who performed electromyography and nerve conduction study, all normal, but he said that small fiber neuropathy couldn't be ruled out by the tests.
     
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  12. JaneL

    JaneL Senior Member (Voting Rights)

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    I had a really low CK reading of just 10 (in the ‘abnormal’ range) in the year that I was diagnosed with ME which was probably when I was at my worst.
     
  13. JaneL

    JaneL Senior Member (Voting Rights)

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    I’m not sure they did a very good job of ‘adjusting for’ activity levels which were based on subjective reporting:

    I can imagine for example that the activity level of a healthy control answering “not active at all” would likely be vastly greater than a severe ME patient who put themselves in the same category.
     
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  14. Estherbot

    Estherbot Senior Member (Voting Rights)

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  15. JaneL

    JaneL Senior Member (Voting Rights)

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    They did pick up on this in the paper:

    My bolding.

    I’m unsure why they say it remains only a possible ‘partial’ explanation and why this couldn’t potentially provide a full explanation for the differences in CK levels?
     
    Last edited: Apr 11, 2019
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  16. Estherbot

    Estherbot Senior Member (Voting Rights)

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  17. JaneL

    JaneL Senior Member (Voting Rights)

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  18. JaneL

    JaneL Senior Member (Voting Rights)

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    Also interesting, from the paper:

     
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  19. intrepidation

    intrepidation Established Member

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    CK levels are thought to decrease with inactivity due to not being released from muscle fibres. (https://www.ncbi.nlm.nih.gov/pubmed/9443588).
     
  20. AndyPandy

    AndyPandy Senior Member (Voting Rights)

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