Possible chronic viral infection in ME/CFS (& other illnesses inc Long covid). Discussion.

I think this analogy works: If we imagine a person walking down a steepening slope; at some point they are caused to fall and tumble for some distance out of control. That they suddenly 'flew' into the air would be for most of us a hugely disturbing view and we inevitably look for immediate explanations - tripping over an object, a pothole or entanglement etc are explanations which fall into our usual expectations of the world and we are prone to readily accept them. And if we can find that there was an object or hole etc that could have caused the fall, this will provide reassurance because it is an explanation of 'normality'. Random flight through the air not required.

A more challenging idea might be that our fall started before we 'tripped', that we were already unsteady or imbalanced or weakened, despite our having no cognition that our ability to walk was in anyway impaired. After all it makes no sense to go looking for some arcane unsteadiness when there's a damn great rock which you caught your foot on.

Ironically science starts with a principle of parsimony - the meanest explanation suffices ! If you fall after an encounter with a rock, there needs to be some additional reasoning to reject the rock/foot contact as the initiating event of the fall. In the case of ME/CFS this additional reasoning comes from the fact the we have no adequate explanation of why the rock is there, and that not every case requires the existence of a rock at all. In the absence of definitive scientific explanations PwME are going to use explanations that work for them, but I think it matters for research that we don't accept at face value the idea that identified infection is the certain precipitator of ME/CFS.

 

A useful article on the limits of knowledge about Long Covid from Stuart Richie - a psychologist but note he quotes the JoHP special edition on PACE with approval ! https://unherd.com/2021/06/does-long-covid-really-exist/

"And, as we wrote, there’s also a risk of “Long Covid”. We linked to a Chinese study from January 2021 showing that many people hospitalised for Covid tended, six months after being released from hospital, to have persistent symptoms: a majority of them reported fatigue or muscle weakness, for example, and almost a quarter reported anxiety or depression. This, surely, is reason enough to take Covid seriously.

In rhetorical terms, Long Covid seemed the perfect stick with which to beat the Covid Sceptics — it added extra weight to our case by bolstering the already scary death statistics, and was the perfect comeback to a breezy “let it spread” attitude. So perfect that I hesitated while typing it out. Could it be too good to be true ?"