Dr David Tuller: Trial by Error: Why Are Exercise Studies for Long Covid Still Failing to Address PEM Adequately?

[Countrygirl]

Dr David Tuller: Trial by Error: Why Are Exercise Studies for Long Covid Still Failing to Address PEM Adequately?

https://www.virology.ws/2023/03/29/trial-by-error-why-are-exercise-studies-for-long-covid-that-overlook-post-exertional-malaise/?fbclid=IwAR2jKw6XLaFvC5092mA4UrpAH2onkePrCFfdVVDc56tT62Kx5L_z2EqyRYw

29 March 2023 by David Tuller Leave a Comment
By David Tuller, DrPH

I have written previously about the issue of exercise studies for long Covid patients. As with the discredited PACE trial for the illness or cluster of illnesses currently being referred to as ME/CFS, the theory behind these studies posits deconditioning as a central cause of patients’ disability. This approach tends to overlook the phenomenon of post-exertional malaise (PEM) or post-exertional symptom exacerbation (PESE), which is characteristic of ME/CFS and reported by many patients with long Covid.

When such studies do mention PEM/PESE, it is not clear they have properly distinguished it from the tiredness that often accompanies exercise and is exacerbated in those who are in fact decondition. In December, for example, I wrote a post about a study called “Effect of using a structured pacing protocol on post-exertional symptom exacerbation and health status in a longitudinal cohort with the post-COVID-19 syndrome.” Among many other methodological issues, some of the PEM episodes documented lasted just one to three hours. Were these examples of PEM, or just standard fatigue?

 

[BrightCandle]

As far as I can tell the BPS crowd have always excluded the inconvienent symptoms and made it all about fatigue. Has any one ever read a paper that isn't a complete symptom study that does contain the real details of the disease? I sure haven't. Most of the symptom studies also seem to miss things many of us talk about and know occurs. Those are the ones that are trying to capture the diseases presentation and even they aren't capturing it.

For the BPS lot however all these other systemic aspects including PEM are very inconvienent as they want to use exercise to solve fatigue and the fact everything else gets worse when they exercise the patients is best not captured. But as far as I can tell this has always been the case in ME/CFS research, we have only recently bothered to even begin to capture the basic symptom list and its still lacking on the picture of the full way in which this disease presents. I have never read research that gets it all, just flashes of them getting little bits of it. Only other sufferers seem to know.

 

[Wishful]

How long does it take for significant deconditioning to occur? If I had been bed-bound for several months, I suppose I might not immediately return to my previous levels, but I think I'd feel driven to push my limits. After having to avoid past-2 PM physical exertion for around a year, I can now go for walks in the afternoon or evening without triggering insomnia, and it's such a pleasure to be able to, that I am going for long walks every afternoon or evening.

I agree that the bad researchers cherrypick their data and twist or misuse definitions to fit their theories. ME's "fatigue-like" symptom is not normal fatigue. Unfortunately, neither symptom is clinically measurable, so bad researchers can twist it how they desire.