Editorial: What is Safe Long COVID Rehabilitation? 2022 DeMars et al

[Andy]

Long COVID is a term coined and preferred by people with the condition that describes persistent effects of Coronavirus Disease (COVID-19) [1]. Long COVID is known by other names including “Post COVID-19 Condition” (World Health Organization (WHO)[2] and “Post-Acute Sequelae of COVID-19” (United States). Long COVID is estimated to affect more than 145 million people around the globe[3] and results in wide diversity of symptoms,[4] episodic disability,[5] reduced quality of life,[6] and work loss,[7] irrespective of hospitalisation or acute disease severity [8]. Improved understanding of appropriate health care and rehabilitation interventions to reduce the burden of Long COVID have been identified as an international research priority.[9].

In September 2022, the patient-led association Long COVID Physio organized the two-day online Long COVID Physio International Forum, bringing lived experiences to Long COVID, disability, rehabilitation, and research. Long COVID Physio is an international, patient-led association of physiotherapists (physical therapists) living with Long COVID and allies, working internationally across peer support, education, research, and advocacy [10]. At the Forum, a discussion session was held to address the question, “What is Safe Long COVID Rehabilitation?” This topic was of critical importance given that some have experienced complications such as acute events, symptom exacerbation, or deterioration following traditional approaches to rehabilitation (i.e., involving progressive loading, physical or cognitive activity, or exercise), as well as perceived lack of support from health care providers who at times question the validity of symptom reports.

Open access, https://link.springer.com/article/10.1007/s10926-022-10075-2

 

[BrightCandle]

The input from 10 different "experts" is really present in this one. Recognition of biological underpinnings of ME/CFS as post viral, but also plenty of BPS undertones for social and Psychology impacts. Recognition of PEM as a problem with heavy exercise, screening for it but also checking patients after you have streniously tested them and still the default of exercise for those patients just below threshold. Its coming from the same sort of place as all the rest of the BPS nonsense really they still don't have any evidence any of this helps but they are at least recognising up front they hurt patients! Would be nice if they also admitted that harm was because they breached the guidelines laid out early in the pandemic that said do not exercise Long Haulers, they still haven't justified why they are even doing any of this.

 

[RedFox]

Going in the right direction, but could be more explicit about why GET is a bad idea. The probably didn't detail the rationale behind all this because it's a group of non-BPS clinicians who are all on the same page.

 

[RedFox]

Recognition of PEM as a problem with heavy exercise, screening for it but also checking patients after you have streniously tested them and still the default of exercise for those patients just below threshold.

The authors of the paper don't believe PEM only happens after what a health person would call exercise. They even recognize mental PEM:

This topic was of critical importance given that some have experienced complications such as acute events, symptom exacerbation, or deterioration following traditional approaches to rehabilitation (i.e., involving progressive loading, physical or cognitive activity, or exercise)...

 

[rvallee]

Nevermind safe. Homeopathy is safe. So what?

Safe and effective is what's needed. All evidence clearly shows that unless there are unrelated problems, and it's good for rehabilitation specialists to know this but no further, there is no evidence that rehabilitation has any benefit on outcomes. It's a complete waste of not only resources but it also distracts from the real work that is still not happening because the whole house was bet on this one thing.

There are good reasons why most pwLC mock and reject the rehabilitation clinics as a joke: they are a joke, a cruel one. They're all fully local, they don't operate in broader networks, don't cooperate or share information, there is no research happening at those clinics and they are effectively a waste of resources.

And still after having lost the bet several times and re-rolling, medicine is betting everything on what is clearly a useless paradigm built out of pseudoscience and fraud. It's the inability to learn and adapt to information that is absurd. It's completely turned off for chronic issues. There is no feedback loop, no concern over everything being flawed and no ability to reconcile how most recover without help, but those who don't should need motivation and coaching.

End the damn death of expertise because it's going to basically ruin everything for everyone. This pandemic has been so badly botched that the next one will be massively worse since all reasonable measures are now basically pure evil and will not be used again. This failure will be studied for centuries, all hubris and extreme arrogance.

The best thing rehabilitation specialists can learn here is that their expertise does not apply other than for unrelated issues. For that it is good that they don't make the patients worse, but this was never an issue of motivation, lack of coaching, not being able to figure out what exercises to do or any of this.

 

[SNT Gatchaman]

At least three of the authors have LC: DO, IA, MV-G.

 

[Wonko]

I thought we knew, definitively, how to cure LC.

Scuba diving, cycling around large Victorian parks, and lots, and lots of interviews - totally cures it 100% of the time, for one person, without any rehabilitation at all.