Atlantic: ‘If Exercise Could Cure This, I Would Have Been Cured So Quickly’, 2024, Katherine Wu

https://www.theatlantic.com/health/...ovid-exercise-post-exertional-malaise/677242/

 

Paywall? Meet ladder: https://archive.is/aSfrg

 

Sorry about that!

 

Thanks @rvallee !

 

I suspect the norm in ME is for people to do as much as they are able at that point of their illness, and if their health does improve at all they do more. Unfortunately as ever the BPS researchers/clinicians confuse association with causation and arbitrarily decide on the direction of any causation in line with their beliefs regardless of any evidence. (Indeed if anything any intervention may be better aimed at getting people with ME doing less rather than more.)

I have had a relapsing and remitting form of ME for some thirty years, I even had a period of several years where I believed I was recovered (some twenty five years ago). However each relapse has been worse and longer than the previous and each remission achieved less recovery and was less enduring. I am now ten years into my current relapse.

So overall the amount of activity I was able to undertake was correlated with my overall health but I would argue that it was that improvement in underlying health that allowed any increase in activity. Certainly my trips to Tibet and later to Antarctica offered no inoculation from subsequent relapses and those relapses have invariably been associated with maximal increases in activity.

I suspect the BPS researchers would argue my variability is evidence for their beliefs of a psychogenic origin, but that then means their explanations are unfalsifiable and therefore unscientific and placed outside any experimental investigation. Certainly no one can convince me that the secondary gains from spending over 75% of my time lying down, only getting out maybe once a month to visit a café, that is if there is no hospital visit or dental appointment that month, are greater than the primary gain from visiting my goddaughter in Osaka which I did achieve in the lead up to my current relapse or visiting my godson in NewZealand which would be my current dream even though just travelling to the nearest airport has been beyond my capacity for ten years.

 

That article managed to miss the obvious point that for many, ADLs are the maximal exertion that can be tolerated. On an average day, I walk to the bathroom, sit down and brush my teeth, stand up and walk back. On a bad day, I have to be helped to shuffle to the lavatory. On a very bad day, I have to be wheeled to the lavatory. On a good day, I walk to the sitting room and lie on the sofa for lunch. On a very good day, I dress myself.

Exercise regimen sorted.

 

It's true that many people w/ME aren't able to do anything beyond the basics, and some need help with the activities of daily living. I'm sorry to hear you're in that boat.

Still, I was encouraged to read an article, in such a well known publication, discussing the reality of PEM, and acknowledging the severity of it. I don't think they totally missed your point:

"PEM, first described decades ago as a hallmark of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), is now understood to fundamentally alter the body’s ability to generate and use energy. For people with PEM, just about any form of physical, mental, or emotional exertion—in some cases, activities no more intense than answering emails, folding laundry, or digesting a particularly rare steak—can spark a debilitating wave of symptoms called a crash that may take weeks or months to abate. Simply sitting upright for too long can leave Letícia Soares, a long-hauler living in Brazil, temporarily bedbound."