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Careful Recumbent Exercise as Therapy for POTS vs ME/CFS - Unraveling the Contradiction + POLL

Discussion in 'General Treatment' started by Jesse2233, Jan 16, 2018.

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How do you respond over the long term to careful (recumbent or water based) exercise?

  1. I have primary POTS and exercise improves my condition

    0 vote(s)
    0.0%
  2. I have primary POTS and exercise worsens my condition

    0 vote(s)
    0.0%
  3. I have primary ME/CFS and exercise improves my condition

    1 vote(s)
    3.1%
  4. I have primary ME/CFS and exercise worsens my condition

    8 vote(s)
    25.0%
  5. I have both ME/CFS + POTS but don't know which is primary and exercise improves my condition

    1 vote(s)
    3.1%
  6. I have both ME/CFS + POTS but don't know which is primary and exercise worsens my condition

    18 vote(s)
    56.3%
  7. I have never tested exercise / I don't know

    4 vote(s)
    12.5%
  1. Jesse2233

    Jesse2233 Senior Member

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    There seems to be a huge contradiction in reported patient experiences in regards to the effectiveness of exercise for POTS vs ME/CFS patients.

    Many POTS patients report full or near remission with careful recumbent / water-based exercise over 3-9 months. This is even reported in post-viral sudden onset POTS patients with strong fatigue and post exertional malaise (who would likely qualify for ME/CFS under the Canadian Consensus Criteria definition).

    And we of course know that ME/CFS patients can relapse horribly with the most gentle aerobic activity (regardless of bodily position).

    -----------------

    We know that the PACE study is bullshit (severely flawed and dishonest), that forced exercise of ME patients without careful consideration of their true condition is akin to an act of evil, and that exercise is not a one-size fits all treatment.

    But we also know that Drs Qi Fu and Benjamin Levine's POTS exercise study showed remarkable results, and did not seem to fall victim to PACE's methodological errors (1).

    From their study:

    -----------------

    What to make of this? Some possibilities:
    1. Primary POTS is a wholly separate condition from primary ME/CFS even if symptoms appear to overlap

    2. There is an overlapping subset of POTS and ME/CFS diagnoses that responds positively to exercise

    3. There is a post-infectious condition (A) that is driven by primary mitochondrial dysfunction and there is a post-infectious condition (B) driven by preload failure (perhaps due to adrenergic / muscarinic autoantibodies). These two conditions are separate, clinically indistinguishable, and do not conform to traditional definitions of primary POTS and primary ME/CFS.

      Both A & B have POTS and temporary worsening after exertion, but A is permanently worsened or not improved by exercise because there's not enough ATP for recovery, whereas B is improved because exercise improves venous tone and blood volume.

      It is possible for a person to have both A & B, and thus be worsened by exercise in the long run, even if it helps certain aspects.

    4. Myalgic encephalomyelitis (in the Ramsay / Hyde model) is a distinct condition that is always worsened by exercise, whereas CFS and POTS sometimes improves.

    5. There is a more esoteric distinction involving immunological and metabolic reactions to exercise induced inflammation (IL6 / eATP / CD39 / mast cells / phagocytosis / glutathione production / microglia activation ?) that is unique to some post-infectious POTS and ME/CFS patients but not others

    6. The conditions may be the same, but a person's unique biological makeup (beyond immunological and metabolic determinants) may determine whether exercise based inflammation in the presence of said condition permanently damages cardiac or neurological tissue. This is perhaps mediated by the location and concentration of a chronic pathogen in organ tissue.

    7. It is pathogen dependent (EBV vs CMV vs Coxsackie vs Lyme) although the anecdotal evidence does not seem to bear this out

    8. It is dependent on severity with mild to moderate patients benefiting from the right kind of very mild exercise, and severe patients being worsened.
    -----------------

    It would be interesting to know if other post-infectious conditions like GBS, PANDAS/PANS, Sydenham's chorea have similar discrepancies in exercise intolerance. The same would be interesting to know for other (likely) non-infectious autoimmune conditions (e.g. Lupus, Crohn's, MS) and other chronic pathogen driven diseases (HIV, Hep C).

    -----------------

    Case in point: My CFS dr (Dr Chia) told me not to exercise even if I felt better, but my POTS cardiologist told me exercise was the next step in getting better.

    -----------------

    SEID as a unique diagnosis superficially clarifies this issue, but does not tell us what's going on under the surface

    -----------------

    Although the ultimate answer is undoubtedly "more studies are needed," I have included a poll to try to sort some of this out...
     
    Last edited: Jan 17, 2018
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  2. Murph

    Murph :)

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    I can't swim much without problems, beacuse it's a fairly arm intensive exercise. Closest I've got to recumbent exrcise is a yoga move called Plank that I do to work on my core. but I feel like tensing myself in that position gets too much blood presssure in my head and makes me feel weird. I can't do it for very long.

    For me the kind of exercise that works is one that involves short bursts interspersed with rest. I can't jog but I can do some fairly gentle sports/games where you get to stand around a bit with intermittent moments of rushing around at times of your own choosing.
     
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  3. Jesse2233

    Jesse2233 Senior Member

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    Interesting Murph. What's your limiting factor for other kinds of exercise? And do you think your limitations are due to metabolic or cardiovascular dysfunction (or both)?
     
  4. Murph

    Murph :)

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    the limiting factor for the other kind of exercise is definitely payback. I could probably run 2km in one go. I'd probably get an endorphin rush and feel great. hours later I'd be doing my best vampire impression.
     
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  5. Jesse2233

    Jesse2233 Senior Member

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    There's also Dr David Systrom's iCEPT research to consider:
    Perhaps this is the subtype smoking gun.

    The next question is how these might respond to various treatments (immune modulation vs antimicrobials vs mestinon / POTS meds vs exercise vs mito cocktail vs CRISPR)
     
    Last edited: Jan 16, 2018
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  6. Jesse2233

    Jesse2233 Senior Member

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    Interesting... how do you experience payback? Worsening of usual symptoms or temporary onset of new ones?
     
  7. Jesse2233

    Jesse2233 Senior Member

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    This is an information rich video summarizing exercise as a therapy for primary POTS (must be watched on Vimeo's site)

     
  8. Sushi

    Sushi Moderation Resource Albuquerque

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    I'm in a category that you missed @Jesse2233. I have both ME/CFS and POTS, ME/CFS is primary and aerobic exercise makes me worse, though I can tolerate short sessions of anaerobic exercise. I get next day or second day payback.
     
  9. Jesse2233

    Jesse2233 Senior Member

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    Hmm my understanding is that the careful recumbent exercise recommended for primary POTS patients qualifies as aerobic (I should’ve made that explicit in the poll), so in that context you’d be option #4 right?
     
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  10. Sushi

    Sushi Moderation Resource Albuquerque

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    Not sure I understand as I also have POTS but it developed later after decades of ME/CFS.
     
  11. Jesse2233

    Jesse2233 Senior Member

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    Interesting, was aerobic exercise possible for you before POTS?
     
  12. Sushi

    Sushi Moderation Resource Albuquerque

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    For very short sessions like a few minutes of swimming or riding my bike slowly. I am listening to the video and am struck at how different this doctor at Duke is from my autonomic specialist--almost could be working with two different diseases! And my autonomic specialist had POTS himself.
     
  13. Jesse2233

    Jesse2233 Senior Member

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    Hmm what does your autonomic specialist recommend?
     
  14. Gingergrrl

    Gingergrrl Senior Member

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    Jesse, I am probably not reading all of your options right... but is there a choice in which someone develops POTS as post-viral but it shifts into autoimmunity (with proven adrenergic / muscarinic and other autoantibodies) but in addition to having Autoimmune POTS, the autoantibodies also cause muscle and breathing weakness which make it impossible to exercise?

    I had 3-4 cardios and several neuros give me a rock-solid POTS diagnosis but then said I had muscle weakness (pre-IVIG) that exceeded what they saw in any other POTS patient. But I have no issues with energy, fatigue, or PEM no matter how much I try to put myself into that box. But zero chance that I could do any kind of exercise and my HR would probably go to 200 and I'd get severe SOB and chest pain. But I can now do things that I consider "exertion" vs. exercise that I could not have done for a million dollars 1-2 years ago. So, basically, I have no idea which group I am in... :D
     
  15. Sushi

    Sushi Moderation Resource Albuquerque

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    Just wanted to say that I felt like punching her when she said with the full weight of her M.D. that everyone should exercise! She may not have patients who have ME/CFS as well as POTS.
    For one, he almost never gave beta blockers feeling that that masked the problem and did more harm than good. He didn't recommend exercise, he gave medications tailored to what was happening in your autonomic nervous system. For me, that meant boosting the sympathetic system as the parasympathetic was dominant. So I did really well with norepinephrine re-uptake inhibitors. I don't know if I still would though as my autonomic profile seems to have changed. He also recommended compression garments and salt--very individual recommendations after extensive testing.
     
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  16. Jesse2233

    Jesse2233 Senior Member

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    Lol hmm I guess the last option

    That’s interesting. Maybe a good term is POTS / MCAS plus. You’ve got whatever causes other autoimmune POTS cases (possibly the CellTrend stuff), but also something extra (almost MG-like). The combo of mold, EBV, and abx must’ve created some sort of very unique molecular mimicry (or something).

    Remind me you had GAD ABs right?

    I wonder... the second Levine study does show a ~50% drop out rate. She seems to chalk it up to fortitude, but maybe they worsened on a metabolic level

    Wow he sounds like a great doctor. What kind of testing did he do to arrive at his recommendations?
     
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  17. AdamS

    AdamS Senior Member

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    What you’ve just described is exactly what I experience when doing exercise. I can also relate to your earlier point about swimming, using my arms triggers symptoms fast!
     
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  18. ryan31337

    ryan31337 Senior Member

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    I would fall into primary ME/CFS (whatever that might be) and secondary POTS, at least chronologically anyway.

    I couldn't accurately answer the poll because at some points over 23 years of illness very gradual and 'PEM-aware' recumbent exercise (swimming) has benefited me greatly and i've built up to high levels of tolerable activity (subsequently reset by crashes), at other times I haven't been able to tolerate it at all.

    I cannot say how or why this is the case, I could speculate that some active disease process goes into remission and at these times I am more able to exercise, but that would just be conjecture.
     
    Last edited: Jan 17, 2018
  19. ukxmrv

    ukxmrv Senior Member

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    I'm not sure how to answer either. I have ME and POTS and the symptoms are quite obvious (to me) and different. My ME is worse as a disease than my POTS (as in level of disability).

    Exercise such as swimming or exercising in an recumbent position doesn't improve my ME and it doesn't improve my POTS. I get severe post exertional symptoms from even non-aerobic exercise.

    My POTS developed as a teenager and preceded my acute viral onset ME. I could aerobically exercise with POTS.

    Being allergic to pool chemicals and getting post exertional symptoms from the trip to and from a pool doesn't help. I've tried gentle exercise in a non-chemical pool but found getting there, changed and back home knocked me out.

    The exception to this would be sea bathing in cold water which helps my POTS. Some PWME report that cold water immersion helps their ME and I've tried this but I usually get too sick from viral symptoms or bad colds to continue and I've not seen long term strong benefits. There is something with cold that does help my ME but I can't seem to be well enough to try this for long.
     
  20. Diwi9

    Diwi9 Administrator

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    Dysautonomia International just had a webinar with Dr. Systrom about POTS entitled: "Exercise Research in POTS: It's not Deconditioning!" I wanted to attend, but the webinar was full. Hopefully they will post the content soon.
     
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