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Exercise Guidelines for Postural Tachycardia Syndrome, De Wandele, Low, Rowe, Simmonds, 2020

Discussion in 'ME/CFS research' started by m.patriarca, Oct 25, 2020.

  1. m.patriarca

    m.patriarca New Member

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    Location:
    Germany
    Preview: https://link.springer.com/chapter/10.1007/978-3-030-54165-1_26

    It is a chapter from an anthology. CFS is also mentioned in other chapters. I have quoted this chapter because of the recommendation for exercises. (Please forgive me, if something like this does not belong here, this is my first contribution).
     
  2. Mithriel

    Mithriel Senior Member (Voting Rights)

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    I like the way it says that you have to be careful with CFS, though ME or ME/CFS would have been better so it makes me wonder if they know enough about us. It is an uphill struggle but a promising first step.

    Interesting.
     
  3. Mij

    Mij Senior Member (Voting Rights)

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    8,204
    "In particular people with overlapping pathologies such as Hypermobility Spectrum Disorder, Ehlers Danlos Syndromes, fibromyalgia, chronic fatigue syndrome or overtraining scenarios need to be carefully managed to avoid exacerbation of symptoms and to enable steady progress".

    Enable steady progress for ME? :emoji_rolling_eyes: Please leave ME out.
     
  4. MEMarge

    MEMarge Senior Member (Voting Rights)

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    2,733
    Location:
    UK
    Hi @m.patriarca thanks for the reference to POTS and welcome to the forum.

    In one of the parents' Facebook groups I am on, it seems that some of the youngsters diagnosed with ME respons and improve with POTS medications, and can tolerate soem exercises.
     
  5. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Location:
    betwixt and between
    Have no access to the chapter, but the abstract looks like the authors recommend some sort of GET, just in some cases accompanied by medications?
     
    Michelle, Wyva and Peter Trewhitt like this.
  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    13,269
    Location:
    London, UK
    The abstract looks as if it has just been made up like the BPS people do.
    I very much doubt there is a scrap of evidence for any of it.
    'thought to counteract' - who by? - seems like people who muddle lots of things together to me.
     
  7. Sid

    Sid Senior Member (Voting Rights)

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    1,051
    I am skeptical of these claims. I have not kept up with this literature recently but a number of years ago a neurologist who diagnosed me with POTS referred me to an exercise programme that was specifically designed for POTS. Being the vexatious zealot that I am, I went and read the primary literature on Pubmed. Needless to say, the study had a huge dropout rate and pretty modest improvements in the remaining participants. It all seemed very PACE-y to me.
     
  8. rvallee

    rvallee Senior Member (Voting Rights)

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    From the few comments I have seen over the years, exercise does seem to somewhat help some POTS patients, but is usually so demanding that it's basically a full-time job to keep at it, at least for many. It doesn't make them particularly functional and the time demands basically seem to cancel most benefits. Seems about the same with fibromyalgia. It "helps" to keep the patients slightly less ill, just not any more functional.

    The research and evidence frankly don't seem that much better than with ME, very little to no objective benefits other than keeping the patients occupied and struggling without significant help or support. The benefits are probably from the fact that POTS usually resolves itself within months, as we can plainly see with LC. Many have had severe POTS for 6-10 months that eventually goes away. I'd bet the vast majority of the "benefits" are the usual natural recoveries that the HCPs attribute to their work. As is tradition.

    It's frankly hard not to conclude that evidence is completely irrelevant in evidence-based medicine. If there's science for it, EBM is unnecessary. If there isn't, well, EBM is simply useless and mostly serves to block real progress by discouraging research on the basis that there is (awful, misleading) evidence already what more could you possibly want?
     
  9. Nightsong

    Nightsong Senior Member (Voting Rights)

    Messages:
    139
    The chapter in question is from "Postural Tachycardia Syndrome: A Concise and Practical Guide to Management and Associated Conditions" (link). I've just skimmed it; here's a sampling:
    x.png

    Unfortunately, while there's acknowledgement that PEM can occur in response to exercise, there's no real consideration that PEM might represent an organic, non-cardiovascular limiting factor, only that patients "perceive physical activity as adversely affecting their condition in the short term".

    Some of the other chapters may be of interest - I see Julia Newton has written a short one on CFS.
     
  10. Dolphin

    Dolphin Senior Member (Voting Rights)

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