Semi-supervised exercise training program more effective for individuals with postural orthostatic tachycardia syndrome... 2023 Wheatley-Guy et al

Full title: Semi-supervised exercise training program more effective for individuals with postural orthostatic tachycardia syndrome in randomized controlled trial

Abstract

Purpose
Exercise like any medication requires the correct dose; to be effective the appropriate frequency, duration, and intensity are necessary. This study aimed to assess if a semi-supervised exercise training (ET) program would be more effective at improving aerobic fitness (VO2PEAK), exercise tolerance, and symptoms in individuals with postural orthostatic tachycardia syndrome (POTS) compared to the standard of care (SOC).

Methods
Subjects were randomized to either the ET or SOC groups (n 26 vs. 23; age 33 ± 11 vs. 37 ± 10 years; VO2PEAK 66 ± 15 vs. 62 ± 15% predicted, ET vs. SOC respectively, p > 0.05). Composite Autonomic Symptom Score (COMPASS 31), 10 min stand test, and cardiopulmonary exercise test were performed at baseline and following 12 weeks. The ET group received an exercise consultation and eight semi-supervised in-person or virtual exercise sessions.

Results
The ET group demonstrated a greater improvement in VO2PEAK, higher or longer tolerance for baseline peak workload, and more often had a delayed symptom onset with exercise than the SOC group (ΔVO2PEAK 3.4 vs. − 0.2 mL/min/kg, p < 0.0001, ΔWorkload 19 ± 17 vs. 0 ± 10 W; Workload time 63 ± 29 vs. 22 ± 30 s; onset-delay 80% vs. 30%, p < 0.05). Individuals in the ET group reported a significant improvement in orthostatic intolerance domain score (p = 0.02), but there was not a significant difference in the improvement in total COMPASS score (− 11.38 vs. − 6.49, p = 0.09).

Conclusion
Exercise training was more effective with greater improvements in aerobic fitness, orthostatic symptoms, and exercise tolerance for individuals with POTS when intensity and progression were personalized and delivered with minimal supervision compared to the SOC.

Open access, https://link.springer.com/article/10.1007/s10286-023-00970-w

 

No mention of monitoring of adverse events that I could see.

And this is the only mention of PEM/PESE,
"The recommendation is a graded exercise regimen building to a target of 30 min, 5 days a week starting with horizontal or recumbent exercise modalities, but no personalized and progressive exercise training program or supervised instruction is provided. Even for healthy individuals there can be hesitation, anxiety, and unfamiliarity when starting an exercise program. This is amplified for those with POTS or other conditions who worry how to exercise safely given risk of post-exertional malaise or symptom exacerbation. Although for some this recommendation will be sufficient, the majority will not be successful in implementing and achieving 150 min of activity/week for multiple reasons. In the study exercise training was delivered in a semi-supervised manner either in-person or virtually."

 

Which, oddly enough, is actually true. So they're comparing graded exercise with minimally supervised exercise, pretending that they need just the right supervision, because I guess patients can't figure out how to *checks notes* exercise. But all that's needed is minimal supervision. I guess they're pretending that graded and progressive mean something different here. And they seem to attribute all of this to anxiety, in part about PEM. So the exact old fear of exercise nonsense. The same as PACE. And FINE. And hundreds more. And hundreds of programs run at various clinics over the world.

So biopsychosocial medicine is gearing up to be this odd mix of blessing priests / Goldilocks / quantum mechanics where you need to find the balance that's just right, and all that's needed for that is minimal observation from a gentle blessing hand, one that can be automated by a small program, but is also "personalized". Nothing at all indicates any personalization, it simply follows a basic fitness formula that can fit on a card-sized chart:

What this shows more than anything is how utterly unreliable the process of clinical trials is, where you can easily "find" whatever outcomes you want. But of course they can't see that. What is observed in those trials never matches what is experienced in real life. They pretty much explain their attribution of improvements on dosage, and all the language attributes it to a higher dose, meaning that they're indirectly saying that more exercise works best, without saying it. But that's not what people experience in real life.

Well, actually they're saying it (although why bring diabetes here?!, this isn't a diabetes study):

So they can claim this, but real life shows otherwise. If it worked as well as they claim, obviously people would dutifully apply it and stick to it. They don't, so obviously something isn't right here. But they prefer the artificial results that look good so whatever, fear of exercise chestnut strikes again!

Although obviously they're just making stuff up about this being some new idea that no one had thought of before, there have been literally hundreds of pragmatic trials with supervised exercise and it's exactly what every clinical program does, with very poor results:

Some of those trials and programs have been heavily supervised, some going on for months. So if higher dose worked best, more supervision adding up to higher dose, more supervision would work better. But it doesn't. So obviously something doesn't add up, but I guess that reasoning out contradictions with real life isn't something they're interested in working out.

 

Oh the old reframing because you can't deal with reality trap.

Exercise isn't a drug, and so the whole 'dosage' stuff is nonsense, much as they'd like to use it as crappy marketing spiel.

And it's even more crappy given that drugs and dosages have damned more strict licensing and regulations on their research: so they first and foremost are checking for harms, and then side-effects with dosages. ie they wouldn't be allowed to be doin their research this way and the focus of output would have to initially be the very bit glossed over as if it doesn't matter here.

They've created a circular fallacy whereby the very thing that 'better health' is almost a pre-requisite for ie a dependent variable is used as an independent variable and I cannot believe how often this has now become the rhetoric that noone has put their finger on this being why it feels like it doesn't make sense them saying it - nor that most of them aren't saying "hang on a minute this doesn't feel liek what we are saying when you are spoon-feeding this phrase to us isn't just craziness"

And you can use the ad populus or 'look at diabetes' fallacy to try and sell it further, but the principle is the same isn't it.

And whether you can push your way through a short-term programme and not become a drop-out isn't actually curing or improving POTS long-term ; maybe even if it did improve those symptoms short-term there is still the issue that even if it might work for siloed medicine to e.g. rot your teeth to improve your health or vice versa with some special acidic or sugar-laden nectar and pretend the vice-versa doesn't matter 'because it's not your domain' but on this occasion it is all pretty inter-related.

Robbing Peter to pay Paul and produce some short-term effect is just manipulation of people as puppets for your own credentials and not 'wellbeing' or health.

And yes they've got an issue because you can't compare those who could do 2hrs of exercise a day with those who couldn't do 10mins as a 5yr follow-up and say that wasn't apples-and-oranges. And they won't -although I hope that the latest physiological testing in the home methodology from @PhysiosforME inspires those who are scientists rather than 'in it for the industry and rhetoric' to think differently about how you can e.g. use the natural setting and natural habits to find a way to match pairs at point zero (both can do similar exercise and health), rank any 'significant health events' (eg virus, overwork etc), and compare those who perhaps did decide to 'push through' for the first six months with those who didn't and see whether at 1,2,3,4,5yr follow-up it made a difference to function overall.

 

As expected, the patients in the exercise group got fitter but this did not improve their postural orthostatic tachycardia according to the 10 min stand test (which the authors omitted to mention in the abstract):

Neither their dysautonomia related symptoms nor their overall quality of life and functional ability improved, and in particular not physical nor social functioning, as shown by the COMPASS, SF-36 and functioning ability scores:

The patients in the exercise group did improve on the role-physical subscale (“degree to which one’s physical health is affecting work or other activities”) of the SF-36, with a borderline p-value of 0.03, but this was again to be expected from reconditioning deconditioned patients, which nearly all of them were at baseline, and it did not reflect an improvement in symptoms.

The authors’ conclusions therefore seem unwarranted.

 

“Even for healthy individuals there can be hesitation, anxiety, and unfamiliarity when starting an exercise program. This is amplified for those with POTS or other conditions who worry how to exercise safely given risk of post-exertional malaise or symptom exacerbation.”

In the context, I read this as;
“healthy individuals”, get nervous in face of trying to learn how to do something new, and that’s okay.

Little pat on the head. Designed to be compatible with mainstream platitudes along the lines of;

‘Its okay to ask for help!’

‘It’s okay to admit you’re unsure!’

‘The secret of being a truly successful individual* is learning from others.’

The invitation.

“There can be”, “hesitation” the ‘normal’ kind. You still have to exercise as when and how I tell you to.

We decide if you’re healthy or not, We’ve granted ourselves that authority over you. If yes you are indeed “healthy”*, you may be nervous, it is allowed. For a little while anyway. Before you submit yourself to our program. Ultimately comply with our ‘prescribed dose’ of exercise. Or die of your obstinacy. Your choice.

The Warning.

If, on the other hand, we think you’re not, actually “healthy”?

In this case you’d better ‘Man up!’, day dot if not before.

Or else we’re gonna be forced, (perhaps reluctantly perhaps not), to write expert opinion after expert opinion about your ‘Abnormal’ perceptions and character formations.

Until, eventually, after reading our words often enough, everyone falls into such a prolonged snooze that nobody can remember why they started reading.

The basic physical characteristics of your ‘unhealthiness’ will be long forgotten, lost to time. But your “worry”, this will be etched forever in their minds. Never to be forgotten. Hearts will feel heavy at the mere mention of your condition……

 

PS I love how the same people then cite the biopsychoscial model saying they are being 'holistic' when they can't even see so far as too treat someone's health problems as a cumulative health instead of imagining what you'd do if you had some imaginary disease where you just needed to increase the blood pressure on standing issue. Because it isn't the latter. And so you'd expect a bit more of a discussion of the specific demographic of those who do have POTS and what/who is and isn't included within that.

Insead it feels like an excuse to imagine 'all bodies are the same' and then if it doesn't work it must be best tackled by passively aggressively insinuating some tosh about 'mental health' and basically weaponising that to hurt people - because yes we are allowed to say it, making up nonsense about people is harmful and unkind and that pretend intention of help needs to be removed. And if it wasn't harmful in itself the last people who should entitle themselves are wholly unqualified people who haven't done any proper critical sudying in scientific psychology, but someone from another area just indulging their own presumption of thinking they know 'anxiety'.

It's so inappropriate for HCPs/allieds to be entitled from 2 day spoon-feed courses to think they can go around thinking they can diagnose and label others, and removes what is really encumbent on them which is empathy and ability to observe and ask questions and take responses respectfully. Assuming others are 'anxious', or putting it down to that in your mind as an excuse to yourself when you don't get everything going as you want is just misogyny not psychology and we need to be allowed to start calling it out as just that. I know hearing, observing and real empathy (understanding what shoes that other person is in) some find 'extra work' but it always was a basic part of every job and being human, that some entitled themselves to remove and not the other way around. And not wanting to or being unable to do that is their deficiency to be treated, not something for the patient to have to be put into a play-act to pretend it doesn't exist as the issue.

You can't just label all patients as anxious because your manner is one-way and your treatment doesn't work and you don't want to/can't hear and observe to see why or even acknowledge it. People are supposed to want to educate themselves and learn when it is their job area.

It's a basic, essential skillset - one might say 'a pre-requisite for science' as exampled by the nonsense about PEM and utter inappropriate phrase being that 'the worry should be addressed rather than the safety'. That's, to me, as foolish as a theme park suggesting that they will tackle the reduced visitor numbers following a number of accidents by 'addressing anxious customers' with a mindfulness course instead of fixing their rides and providing certification to prove the safety.

I've never seen the likes of it as an attitude, talk about deaf ears.

It's a shame because it could be such an interesting area for them to do forensically and work out who x works for and who x on balance is a bad idea for and what to look out for and so on. You know, in the area they could be qualified to be doing.

 

I would love to have access to some good quality physiotherapy. Of the variety that wasn’t going to be at best tainted and at worst totally derailed by a fixation on a recipients mental state rather than physical state.

I am right now horrifically physically de-conditioned.

This since adding in LC 2020-present day. Worsened DA, through not confirmed yet as POTs.

Absolutely terrifying.
So much more terrifying to dramatically and rapidly lose the majority of one’s muscle mass and with it basic, minimal, fitness level -minimal fitness levels painfully fought for and clung to over decades of ME-, than it’s to do a tiny wee little bit of exercise.

It’s just so insufferable and insulting of them. Polish up claim credit for and inflict upon us the same old same old, stale, unhelpful, harmful, inaction able or unsustainable plan, and then to point the finger at our minds as the obstacle to the success of their plan, for us.

 

Uh. I had noticed that they mentioned improvements in autonomic symptoms, but missed this.

And since they're using heart rate as evaluation for their target during exercise, and heart rate is more elevated in this patient group... What does it even mean? Oh they talk about a delayed symptom onset. Woopdidoo.

Hiding the only objective test of the condition, by emphasizing some independent variables instead. Typical. Oh, actually, no improvements. I kind of looked throughout the text but they admit it in the results:

So it looks similar to CODES, in that there is no actual difference, but some change that could be construed as a difference. And they are arguing that because, uh, it looks good to them? Good grief. Is there anything legitimate in non-pharmaceutical trials? Like, at all?!

Pffft. Even when they have some minimal results, it's less than underwhelming, and they have to cherry pick everything. Ridiculous. Non-serious.

 

Also, as noted by @cassava7:

So, this is worse. Do they understand that this means worse? I guess not. They talk about an increase, but this is a problem of tachycardia, where a decrease is sought. And a decrease in resting heart rate is the mark of better fitness, not the opposite.

So they actually got worse? I mean yeah this is basically what should be expected of doing the wrong thing. Unless I missed something here.

Meanwhile after some prolonged rest, a change in diet and trying some supplements, my resting heart rate has been plummeting. With data, and charts and stuff. I still have POTS, but I see the drop over time and it is very significant.

 

Aw, screw it, this deserves a meme:

(Text is kinda blurry so it reads: "In the tolerance of positional changes assessment using the 10 min stand test, those in the exercise group demonstrated a 4-bpm increase on average in their resting supine heart rate (77 ± 15 vs. 81 ± 13 bpm, baseline vs. 3 months post, p = 0.0022).")