Jesse2233
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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).
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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:
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What to make of this? Some possibilities:
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).
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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.
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SEID as a unique diagnosis superficially clarifies this issue, but does not tell us what's going on under the surface
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Although the ultimate answer is undoubtedly "more studies are needed," I have included a poll to try to sort some of this out...
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:
Short-term (i.e., 3 months) exercise training increases cardiac size and mass, blood volume, and VO2peak in POTS patients. Exercise performance is improved after training. Specifically, stroke volume is greater and heart rate is lower at any given VO2 during exercise after training versus before training. Peak heart rate is the same but peak stroke volume and cardiac output are greater after training. Heart rate recovery from peak exercise is significantly faster after training, indicating an improvement in autonomic circulatory control.
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What to make of this? Some possibilities:
- Primary POTS is a wholly separate condition from primary ME/CFS even if symptoms appear to overlap
- There is an overlapping subset of POTS and ME/CFS diagnoses that responds positively to exercise
- 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.
- Myalgic encephalomyelitis (in the Ramsay / Hyde model) is a distinct condition that is always worsened by exercise, whereas CFS and POTS sometimes improves.
- 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
- 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.
- It is pathogen dependent (EBV vs CMV vs Coxsackie vs Lyme) although the anecdotal evidence does not seem to bear this out
- 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...
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