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Article by Cort Johnson: "The Exercise Intolerance in POTS, ME/CFS and Fibromyalgia Explained?"

Discussion in 'General ME/CFS News' started by Sasha, Jul 5, 2016.

  1. Sasha

    Sasha Fine, thank you

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    Interesting (though largely over my head!):

    Read the rest at:

    http://www.healthrising.org/blog/20...-fibromyalgia-chronic-fatigue-pots-explained/
     
  2. anciendaze

    anciendaze Senior Member

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    Please note that we already have a thread on this publication, (but not about Cort's blog.) I posted a comment about the paper some time ago, when I wasn't in my current crash. I want to reiterate my opinion here that the common idea that blood vessels are inactive pipes which just need to be tightened up by vasoconstriction in POTS is seriously misleading. The process by which blood is pumped back to the heart by check valves in veins is highly dynamic, alternating between vasoconstriction and relaxation. If there were no change in vessels there would be little or no flow. Muscular activity provides the trigger for this return flow, and evidence is accumulating that the normal process by which the dynamic changes take place near muscles is defective in ME/CFS patients.
     
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  3. lnester7

    lnester7 Seven

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    In my case ls a good explanation. I Walked about 3.5 miles ( i was crazy and haven't done that in a while ) but I was w mom and is a long story.

    So I just crashed very badly and took my vassocontriction drug and I am back up in a few minutes.

    Midodrine makes the difference from bed to up for me. I do have Cfs and POTs also.
     
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  4. anciendaze

    anciendaze Senior Member

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    @lnester7,

    You would be in the group for which this paper applies directly. In saying that most ME/CFS patients would not meet strict clinical standards for tachycardia and dyspnea I was not dismissing your problems at all, I was simply trying to say that waiting until patients have trouble breathing before you take problems seriously is only slightly better than waiting for them to collapse.

    I did not mean to imply that midodrine is worthless, just that it is not a complete solution. It will help to compensate for the hypovolemia and low blood pressure many experience, but if you read the paper you will discover that even preloading patients with IV saline did not restore performance fully because a specific mechanism of compensation remained defective. I've now read too many reports of patients given your combination of beta blockers to reduce tachycardia and midodrine to boost blood pressure who still have low pulse pressure (systolic - diastolic) while upright, suggesting poor cardiac output. The numbers look better than before, but this status resembles health in much the same way that the wax figures in "Famous" resemble living persons.

    It happens that you can estimate variations in cardiac output using heart-rate*pulse pressure as a proxy for invasive measurements like those used in this research, once you have a more reliable measurement to calibrate things. You cannot simply assume that homeostatic mechanisms are compensating for things you cannot measure, as in healthy people, because these may be broken. If you do this you will discover that patients who had "low normal" cardiac output while supine, as most such measurements are made, experienced a drop while upright which puts them temporarily in the same state as a patient with actual heart failure. It is not considered heart failure because the problem resolves when they lie down. (I can report that if a patient does so, to prevent syncope, in say, Walmart, they will elicit an official response which doctors dismissing the problem don't consider.)

    It is also possible to see changes in the shape of the atrium under orthostatic challenge which directly indicate low inlet pressure. Dr. Cheney calls this atrial cavitation, but I'll warn you that most doctors say this does not happen. I've run some video clips of the changes past doctors who say there must be some mistake in the way they were obtained. Maybe this research will cause them to revise opinions.
     
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  5. panckage

    panckage Senior Member

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    That sounds very positive. Does the midrodrine keep working to stop the whole PEM episode?
     
  6. lnester7

    lnester7 Seven

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    It depends and there is no way to predict. If I am doing better in general ( like a 7 as base) it will stop the PEM episode vs when I am on a 4 or 3 but I am so unpredictable that who knows. It usually gives me about 4 points of 10. I would be definitely bed ridden without it.
    @anciendaze I understand your point and agree. But I think we have some vascular issue ( egg or chicken is another discussion). While they figure it out, for those who tend to have low BP is a great alternative to sustain a somewhat normal live. But I hear you we need to dig, this is just a patch to the overall issues.

    If we get this validated at least can mean a bit of hope for many( so doctors can prescribe and at least patients to try and have options)
     
    panckage likes this.

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