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Do we think CFS affects the heart or not ?

Discussion in 'General ME/CFS Discussion' started by ash0787, Nov 20, 2016.

  1. ash0787

    ash0787 Senior Member

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    It seems like if CFS affected the heart like it does our arm muscles etc then we would probably die,
    so is it safe to assume that it doesn't affect it at all ? I know its a different type of cell with more mitochondria etc but also I remembered that it has a different metabolism which prefers not to use carbohydrates ( sugar ) and instead used fat or something, I wonder if this could perhaps explain why it isnt affected because
    there is the theory that we are relying more on amino acids for the energy ?

    I know that our HR does not go as high during exercise but I wonder if that is due to nervous system
    rather than a limitation of the hearts capability.

    Has anyone else thought about this before ?
     
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  2. lansbergen

    lansbergen Senior Member

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    When I was at my worse my heart stopped several times for a few seconds. @anciendaze had an explanation for it.
     
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  3. alex3619

    alex3619 Senior Member

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    The answer absolutely has to be yes. However its not clear exactly what is happening either, and may not fit conventional notions of heart issues, and it may even be secondary to other issues.
     
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  4. TigerLilea

    TigerLilea Senior Member

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    I've never had anything show up on EKGs and my blood pressure is good. Maybe for some people there are heart issues, but I don't think that is the case for all of us with CFS/ME.
     
  5. AndyH

    AndyH

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    Dr Cheney, who used echos, stated that his patients had lowrer than normal cardiac output with 30% having an output in the cardiac shock range and the more severely affected, the worse the output. Perhaps it's difficult for a cardiologist without the right knowledge to detect subtle differences at the milder end of the spectrum. I'd be interested to know more.
     
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  6. charles shepherd

    charles shepherd Senior Member

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    A number of cardiac abnormalities have been reported in ME/CFS in research studies - these are summarised and referenced in the Research section of the (2016) MEA purple book (abstract below). We can send a copy of this book to your GP, or your consultant, if you live in the UK and supply the MEA with contact details.

    One reason why some people with ME/CFS have abnormalities relating to pulse rate (especially palpitations) and low blood pressure (hypotension) is because a key part of the autonomic nervous system (that regulates pulse rate and blood pressure) is quite often involved in ME/CFS. And in some cases this also results in a specific problem called POTS (postural orthostatic tachycardia syndrome) - which produces dizziness, palpitations, feeling lightheaded and sometimes even fainting.

    Again, there is detailed information on the diagnosis of POTS, and a summary of key research papers in the MEA purple book

    We also have a new MEA information leaflet covering all aspects of POTS relating to ME/CFS

    From the Research section of the MEA purple book

    5:5 Cardia Function

    Although cardiac symptoms, such as palpitations and postural hypotension, may be the result of autonomic dysfunction, new research indicates that there could also be a role for impaired cardiac function.

    Using magnetic resonance cardiac tagging – a novel technique that assesses myocardial wall function in vivo – Hollingsworth et al (2012) found that patients with ME/CFS have markedly reduced cardiac mass and blood pool volumes, particularly end-diastolic volume. This results in significant impairments in stroke volume and cardiac output compared to controls.

    A ‘small heart syndrome’, with small left ventricular size and low cardiac output, has been suggested to lead to poor physical stamina and chronic fatigue (Miwa and Fujita 2011; Peckerman et al 2003).

    Autonomic symptoms, including orthostatic intolerance. Autonomic symptoms are very common in ME/CFS, and orthostatic intolerance refers to an inability to sustain upright activity. Symptoms of orthostatic intolerance occur after standing up from a recumbent or resting position or after prolonged standing. They include light-headedness, spatial disorientation, feeling faint, sweating, palpitations and fainting. It is important to identify postural autonomic symptoms in patients because these patients are more likely to become bed-bound due to the fact that standing up makes them feel much worse.
    Autonomic symptoms can be assessed using the Orthostatic Grading Scale, which allows a quantification of symptoms in relation to standing. Scores of 4 or above are considered to be consistent with orthostatic intolerance. Scores of 9 and above are consistent with orthostatic hypotension. Orthostatic grading scale: http://www.meducator3.net/algorithm...thostatic-grading-scale-schrezenmaier-et-al-0

    Those who have postural dizziness together with a history of loss of consciousness should be assessed, diagnosed and managed according to the NICE syncope guideline (National Institute for Health and Care Excellence 2010) and the European Society of Cardiology guideline (European Society of Cardiology 2009). This may involve formal autonomic testing and tilt table testing. Ideally, this should include continuous beat-to-beat heart rate and blood pressure measurement in order to detect subtle blood pressure changes.




    Table 9

    Postural orthostatic tachycardia syndrome

    Postural orthostatic tachycardia syndrome (PoTS) sometimes forms part of autonomic nervous system dysfunction in ME/CFS (Hoad et al 2008). PoTs is defined as symptoms of orthostatic intolerance associated with an increase of heart rate from supine to upright position of > 30 beats per minute (or 40 beats per minute in the 12-19 year age group) or with a heart rate of > 120 beats per minute on standing. Clinical evaluation should therefore include a response to standing.In the recent British Journal of Cardiology review of patients with PoTS and their experience of healthcare in the UK, Kavi et al (2016) found that 81% of respondents were between the ages of 18 and 49 years and 92% were female. The most common symptoms at presentation were fatigue (91%), light-headedness, dizziness or presyncope (90%) and palpitations (86%). Syncope or blackouts were experienced by 58%. Other commonly presenting symptoms (in over 40%) included difficulty thinking (often described as brain fog), physical weakness, visual disturbances, breathlessness, vertigo, shakiness, chest pain, sweating, bloating, symptoms of anxiety, poor sleep, daily headache, acrocyanosis (purple-blue discolouration of hands and lower limbs), tingling in peripheries, nausea, abdominal pain, heat and exercise intolerance and ‘coat hanger’ pain (thought to be due to ischaemia of neck and shoulder muscles).Research aimed at characterising ME/CFS patients with or without PoTS found that those with PoTS were younger, less fatigued, less depressed and had reduced daytime somnolence (Lewis et al 2013a). They also had greater orthostatic intolerance and autonomic dysfunction. Those with PoTS may require further investigation and consideration for therapy to control heart rate (Lewis et al 2013a).Further evidence relating to the important subgroup of ME/CFS patients who also have PoTS comes from Nijs and Ickmans (2013). For a review of PoTS, see Benarroch (2012) and Kavi et al (2016). NB: In patients presenting with chronic fatigue and/or orthostatic intolerance, low ferritin levels and hypovitaminosis D may be present, especially in those with postural tachycardia (Antiel et al 2011).




    Dr Charles Shepherd

    Hon Medical Adviser, MEA
     
  7. AndyH

    AndyH

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    I can't say I know anyone without cardiac symptoms of somexsort, so not surprised by the high percentages quoted. Useful info. Thanks.
     
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  8. Groggy Doggy

    Groggy Doggy Senior Member

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    Symptoms of ME can be similar or different among us. It depends what system or systems are failing.
     
  9. *GG*

    *GG* Senior Member

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    Think my Heart rate hit almost 200 during my exercise testing. How much higher could it go?

    GG

    http://forums.phoenixrising.me/inde...s-from-2010-ithaca-college.47906/#post-786396
     
  10. Sushi

    Sushi Senior Member Albuquerque

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    It isn't necessarily the arm muscles that make using our arms difficult for many of us, it may be more related to autonomic issues triggered by using the arms--particularly when they are higher than heart level.
    My cardiologist (electrophysiologist to be specific) is ME/CFS/Dysautonomia aware and she feels that my dysautonomia played a part in me developing atrial fibrillation. There is a lot of literature relating Afib to the autonomic nervous system. This is a cardiac problem you do not want to have! So, yes there can be related cardiac complications.
     
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  11. ash0787

    ash0787 Senior Member

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    I'm not sure everyone quite understood what I meant, since the heart is a muscle why isn't it subject to the same problems other muscles have, like weakening significantly after use, gradual loss of muscle mass over time.

    Why doesn't having a high heart rate cause PEM if using the leg and arm muscles does ?

    It doesn't seem possible that you could say lift a small weight once every 15 seconds all day long with CFS and not quickly incur some sort of problem that stopped you from continuing that activity

    If the same biological process that is weakening the rest of our body to a great extent affects the heart, how can the heart continue to function near-normally ?
     
  12. erin

    erin Senior Member

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    My heart beats more than it should, my cardiologist is sure this is not due to a defect of my heart. He says it's a neurological or hormonal problem. Probably due to ME (I say to myself).
     
    Last edited: Nov 20, 2016
  13. charles shepherd

    charles shepherd Senior Member

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    That's a very good question and (as a doc) I don't have a simple scientific answer

    The best guess I can make is that there are significant differences between heart/cardiac muscle and skeletal muscle (which is involved in ME/CFS). Some key differences:
    • Skeletal muscles are voluntary muscles; a person has complete control of their movement. Cardiac muscles, on the other hand, are involuntary muscles; the muscles contract and relax subconsciously.
    • The nerve supply for skeletal muscles originates from the central nervous system. This explains why skeletal muscles are voluntary. Cardiac muscles are supplied by the brain and autonomic nervous system, explaining the involuntary control of said muscles.
    • Skeletal muscles are distributed throughout the body; they are attached to bone via tendons like biceps, triceps, quadriceps and hamstrings. Attachment can also be achieved via aponeurosis (a sheet of pearly white fibrous tissue which takes the place of a tendon in sheet-like muscles having a wide area of attachment) like in the case of abdominal muscles. Cardiac muscles, on the other hand, are exclusively located along the walls of the heart.
    • Skeletal muscles are important in body movement like sitting, walking, and lifting. Cardiac muscles function solely for pumping blood away from the heart towards the lungs and throughout the body.
    • Skeletal muscles can contract rapidly but get tired easily. On the other hand, cardiac muscles can also contract rapidly but never get tired.
    • Skeletal muscles have no branches, unlike cardiac muscles that have branches.
    • The cells of skeletal muscles can have one or more nucleus per muscle fiber. In cardiac muscle cells there is one nucleus per fiber.Source: http://theydiffer.com/difference-between-skeletal-and-cardiac-muscle/


    So heart muscle contractions are largely under (involuntary) autonomic nervous system control whereas skeletal muscles are under direct (voluntary) control

    And there are also differences between mitocondrial content and function in cardiac and skeletal muscle

    What might help to increase our understanding as to why ME/CFS appers to involve skelatal muscle but not cardiac muscle might come from microscopic examination of cardiac tissue - to see if there are any changes in peole with ME/CFS

    My gut feeling is that the answer would be no

    Anyway, I still think we ought to probably add this to the list of investigations that are carried out when post mortems occur

    More info on differences between cardiac and skeletal muscle:
    http://www.differencebetween.net/science/health/difference-between-cardiac-and-skeletal-muscle/

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
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  14. Barry53

    Barry53 Senior Member

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    Sarah Myhill mentions this:-
    See http://drmyhill.co.uk/wiki/CFS_-_Th...output_secondary_to_mitochondrial_malfunction.
     
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  15. ash0787

    ash0787 Senior Member

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  16. Barry53

    Barry53 Senior Member

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    I think of it a bit like a car engine; the engine itself actually consumes a lot of its own power just to keep itself going. To me this is akin to maintaining its own life support systems. The power that gets out of the engine to the transmission (its brake power) is what is left over, after the engine's own demands have been fulfilled.

    So even when the car is not moving at all, if the engine is running then it consumes power. If for some reason the engine power is severely restricted, there will nothing to spare to move the car itself.

    And of course if the available power falls below what even the engine needs to "survive", it will die. But you can restart an engine. I imagine that for those poor ME sufferers who have not made it, some may simply have lost too much available power to even maintain life support.

    But do please note this is only my own idle thoughts, nothing more.
     
  17. taniaaust1

    taniaaust1 Senior Member

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    Many of us cant stand for long due to having low blood volume with this illness. When we stand blood is struggling to get up to our brains.
     
  18. ash0787

    ash0787 Senior Member

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    Yeah I get what you mean barry, I'm really good at understanding complex systems though to the point where I do it for entertainment so the analogy isn't necessary in this case for me to understand it, but I couldn't necessarily think of a better analogy than that one.
     
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  19. Sing

    Sing Senior Member

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    Dr. Paul Cheney has made a particular study of the heart in his ME/CFS patients. He finds unusual problems that cardiologists don't look for, which is serious. Worth listening to that lecture in the archives or via google

    And certainly if you are one of those who blood pressure is often very low, neither the heart nor anything above it is getting normal oxygen or circulation. My bp is so low that I go into chest pain, shortness of breath, incoordination, dimming of vision, lack of an ability to think or remember. The only reason I would ever still be standing is for survival, such as when in places where I can't stop or sit down without someone calling an ambulance. So I tough it out to the bitter end. I think this is unfortunate, not only because it is a painful ordeal, but also because I think I am giving myself brain damage and maybe some heart damage.

    I read that the Japanese study that called what we have "small heart disease" was seen as a kind of misunderstanding. Due to incomplete filling of the left ventricle, the heart appears small but is not actually so.

    As with Dr. Myhill's thoughts or findings, Dr. Bell also found low blood volume, so this increases the strain on the heart and all points north, especially the brain.

    Recently Leonard Jason, doing one of his statistical surveys and questionnaires found that heart disease or failure was the leading cause of death for those with ME/CFS after suicide, and that it kills people at substantially younger ages on average than is the norm in the general population.

    ME/CFS is not good for the heart and once again, what cardiologists typically look for and view as problems may not include our problems so we may pass their tests and still come up very short. While I am excited about the various areas of promising new research, what I wish more than anything is that all these questions about the heart in our illness would be thoroughly examined.
     
  20. Skippa

    Skippa Anti-BS

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    I have a handful of small heart "defects" on echo and electro, but sitting on the doctor's chair my heart rate is strong and "perfect" (like that of an athlete) and my blood pressure is "better than my doctor's I'm slightly jealous" so go figure...

    Every. Damn. Time. *checks vitals* you are young and healthy, more than most, go out and enjoy life.

    Grrrr.
     

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