Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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" Variability of postural orthostatic tachycardia in patients with myalgic encephalomyelitis..."

Discussion in 'Latest ME/CFS Research' started by Kyla, Sep 16, 2015.

  1. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    http://link.springer.com/article/10.1007/s00380-015-0744-3
    (Pay-wall)


    I've broken this into paragraphs for easier reading, click the above link to view original.



     
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  2. halcyon

    halcyon Senior Member

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    I wasn't familiar with the name but it appears to be one of the authors of the ME ICC. Looks like they have some other papers on ME and cardio stuff.
     
  3. halcyon

    halcyon Senior Member

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    Anyone else having trouble parsing the last sentence?
     
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  4. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    That's funny!

    $39.95 would probably reveal it all.
     
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  5. SOC

    SOC Senior Member

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    Yes, I keep reading it over and over trying to figure it out. I thought is was my usual cognitive issues getting in the way. Maybe not. :p Can anyone reconstruct that sentence to be shorter and perhaps a bit less complex?
     
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  6. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    I was trying, everything makes sense until they throw in the "preload reduction" part.
     
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  7. Keith Geraghty

    Keith Geraghty Senior Member

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    in ME patients with orthostatic intolerance, the exaggerated activation of the sympathetic nervous system while standing appears to switch to the impaired sympathetic activation after the system is loaded with the additional accentuated stimuli associated with the preload reduction

    my interpretation of this finding is that orthostatic intolerance is induced while standing due to over active sympathetic response - ie when you stand, blood pressure to brain may not be maintained in rapid time in response to the demand to increase pressure, thus theres an over-stimultion on sympathetic side, increased heart rate -

    however, as preload, ie blood supply to the heart is reduced, there would be another sympathetic response due to additional need to maintain blood pressure, ie to restrore normal preload

    its a very silly way of explaining in my opinion -
     
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  8. JaimeS

    JaimeS Senior Member

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    Another article talked about how orthostatic intolerance is predictive of QOL in ME. Rather than because dizziness is a terribly debilitating symptom, it may be because it is a predictor of severity. Very interesting.
     
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  9. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    OH = dizziness is a bit like saying ME = fatigue.

    Primary POTS patients can have a list of symptoms almost as long as (and very similar to) ME (here is a good list : http://www.dinet.org/index.php/information-resources/pots-place/pots-symptoms) and quite a high level of disability. the only major difference is PEM and response to exercise

    which is to say autonomic dysfunction in itself can be quite debilitating.
     
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  10. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Thank you.
    You get a prize for parsing that truly impenetrable sentence :trophy:
    ;)
     
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  11. Gijs

    Gijs Senior Member

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    The exaggerated sympathetic nervous activation is the key problem of this disease for a subgroup not all ME/CFS patiënts. This subgroup can be objectively indentified and must get another name. There symptoms are not subjective but can be measured by bloodflow problems, tachycardia etc... The one million dollar question is; what causes this overactivity? This is the central issue for POTS/ME. I think it is autoimmunity against Beta receptors and Alfa. This subgroup has an autonome vasculair disease.
     
  12. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    The study population was consecutive patients at one clinic, and apparently 100% of them had OI. It looks like the only exclusion was severe OI (inability to stand up quickly). Its of course possible there is selection bias in terms of who attends this clinic, and how they diagnose, but this study seems to be suggesting some level of OI is universal, not a subgroup

     
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  13. Gijs

    Gijs Senior Member

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    OI can have many causes not all with OI have overactive ANS, this is a hall mark for a subgroup. You can notice this if you never feel 'relax' like you are running even when you lay down or have taken a sleep. If you don't have this symptoms and feeling relax you don't have overactive ANS. This is a big difference between CFS patiënts.
     
  14. BurnA

    BurnA Senior Member

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    Do you have more information on this ?
     
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  15. JaimeS

    JaimeS Senior Member

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    Sure. Here is the article. Note that it's one of Newton's.

    Orthostatic symptoms predict functional capacity in chronic fatigue syndrome: implications for management

    Uh, something's wrong with the attachment button? Okay, here's the url:

    http://qjmed.oxfordjournals.org/content/103/8/589.long

    -J
     
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  16. BurnA

    BurnA Senior Member

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    Can you point out or explain where you got the bit about predictor of severity from ?

    For me, the result below does not suggest this.

    The results confirm that worsening autonomic symptoms are independently associated with increased functional impairment, whereas worsening cognitive impairment or fatigue is not.

    Thanks.
     
  17. JaimeS

    JaimeS Senior Member

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    Sorry, @BurnA , we misunderstood one another.

    I was suggesting the possibility that orthostatic intolerance in ME might be associated with functional impairment or illness severity. This article doesn't set out to prove that one way or the other; instead, it demonstrates that OI symptoms are most associated with QOL.

    -J
     
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  18. Firefly_

    Firefly_ Senior Member

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    Huh, my parsing went a bit more like this; the blue pelicans intuited in their executive umbrellas that the Damn Greek gobbledygook was in actuality a big steaming pile of jackalope dookey. course I've had a couple of drinks so I may be a bit mistaken. Don't take anything I say to be medical advice.
     
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  19. Dolphin

    Dolphin Senior Member

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    From the discussion:
     
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  20. Dolphin

    Dolphin Senior Member

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