Individually tailored exercise in patients with postural orthostatic tachycardia syndrome related to post-COVID-19 condition... 2024 Svensson et al

[Sly Saint]

Abstract
Postural orthostatic tachycardia syndrome (POTS) occurs in approximately 30% of people with highly symptomatic post-COVID-19 condition (PCC). It involves several symptoms that limit physical and psychological functions and cause reduced quality of life.

Evidence for different treatments of POTS and PCC is limited, and this study aimed to evaluate the feasibility of individually tailored physical exercise. The secondary aim of the study was to evaluate the preliminary effectiveness of this intervention.

Twenty-six participants (81% female, median age 41 years) were enrolled and performed individually tailored endurance and strength training, with progression, for twelve weeks. During the intervention period, the participants had weekly support from a physiotherapist. Feasibility was evaluated with good compliance, with 76% adherence to exercise prescription and 96% completing the study protocol. The treatment was safe, and the evaluation methods (questionnaires, physical assessments, and accelerometer monitoring) were judged to be feasible.

After the intervention, improvements in symptom burden as well as in psychological and physical functions were observed. In conclusion, future randomized controlled trials can be performed with only minor adjustments and could include questionnaires, physical assessment and accelerometer monitoring, which were demonstrated as feasible by this study.

https://www.nature.com/articles/s41598-024-71055-5

eta:

Since there is uncertainty and imprecision in the probability of adverse events from previous studies in both POTS20,21,22 and PCC11,12,13, this study adds new insights and few patients reported increased symptoms, that were considered low/moderate risks or safety concerns. These symptoms are part of the disease and can thus be expected to fluctuate over time. One might speculate whether increased symptoms were caused by the intervention itself or by other possible triggers in daily life.

As reported by the participants several factors in their private lives affected their possibility of carrying out the intervention. Our clinical experience with PCC-POTS patients emphasizes the importance of pacing strategies during physical exercise. This strategy has previously been used in patients with similar symptoms to PCC-POTS, for example in populations with myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). Pacing and slow progression have successfully been applied to reduce negative effects, post-exertional malaise (PEM), and worsening of symptoms within these populations53,54,55.

For the participants in this study, a slower progression and/or lower intensity might have reduced the described negative effects further, warranting a longer period of intervention in future randomized controlled trials56. What appears in the participants' feedback is that activities and events in their everyday lives also affect them, hence it may be important to include support to manage their symptoms in daily life as a part of the treatment.

Symptoms that were frequently reported, during the intervention as well as at pre- and post-assessment, were mental fatigue and PEM. The only fatigue score that was part of the data collection was FSS—however, the scale did not fully seem to capture the complexity of fatigue. The results of FSS showed a tendency towards ceiling effects, which makes the instrument difficult to interpret for the population indicating that the instrument might not be sensitive enough to identify relevant changes in fatigue within this population.

The study from Gibbon et al.20 used the Krupp Fatigue Severity Scale and reported similar difficulties with severe and persistent fatigue, and discussed whether the fatigue symptom is resistant to the graded exercise intervention, in contrast to patients with ME/CFS54. However, reduced fatigue was not the main objective of this study, but still seems important to assess in studies of PCC and POTS, since fatigue has a major impact on daily life16. Interestingly, during the post-intervention assessment and at the weekly follow-up by the physiotherapist, many of the participants reported that they experienced increased muscle strength in the lower extremities, although in this study no appropriate evaluation method for this domain was applied. An evaluation of muscle strength would be valuable to measure the effects of exercise interventions in future research.

However, early in the process, it was noticed that the number of measurement occasions as well as the physical tests performed on each occasion were very demanding for the participants. Thus, the decision was made to change the design to a non-randomized feasibility study. The change in design meant a greatly reduced number of measurement sessions for the participants, which probably caused less fatigue and PEM compared to what a single-subject design would have entailed.

 

[rvallee]

A feasibility trial for the treatment that has been dominant for decades and millions have been subjected to, to widespread and acknowledged failure (while at the same time most seem to pretend that it works, somehow). It's been the target of fanatical obsession and controversy literally for decades, and they think it actually makes sense to go "hey, has someone tried that? to check it if works? no, to check if it's feasible?". The someone, somehow, goes "here's some money from the infinite useless-trial tree".

Health care professionals can be the absolute biggest trolls in the world when they completely turn their brains off about something. You could not possibly conceive of a more trolling behavior than this in any context.

 

[bobbler]

A feasibility trial for the treatment that has been dominant for decades and millions have been subjected to, to widespread and acknowledged failure (while at the same time most seem to pretend that it works, somehow). It's been the target of fanatical obsession and controversy literally for decades, and they think it actually makes sense to go "hey, has someone tried that? to check it if works? no, to check if it's feasible?". The someone, somehow, goes "here's some money from the infinite useless-trial tree".

Health care professionals can be the absolute biggest trolls in the world when they completely turn their brains off about something. You could not possibly conceive of a more trolling behavior than this in any context.

there was a sort of joke when I was a youth where lads would do something annoying, continually, like poking you as you tried to have a conversation with others, and either say 'are you annoyed yet' or 'does it make you laugh yet' or something other.

This is like that joke on harrassment but without the joke bit really isn't it. Except you know from past methods that they'll tweak what they measure to 'nothing' and change the participants as far as they get away with to those most vulnerable to the coercion and suggestion ie newbies who aren't that ill to have crashes immediately and are in situations where they 'have to hope' that maybe even if it causes their health to seem to get worse short term then maybe the promise will work long term.

The problem with these feasibility trials is that it's a foot in the door in an abusive relationship sense because it is merely testing 'if this magically started being something that xxxxx promise, do you fancy it as something to try' and then not mentioning the instead likely outcome based on a history of it always ending up with people 'dropping out' because they got much worse and even then they won't measure past 6months cos you know... well I'm sure those patient surveys are just anecdotes because they are crazy fools who can't think of any other way of spending the energy they don't have than reporting things.

'howabout if it didn't hurt you this time?' well er, given I've been trained to be called someone negative who is ill because of my lack of hope if I don't say yes, then I guess that would be different?

Is it just me that feels why aren't others picking up on what this behaviour smells of?