Harvard Health Publishing: Chronic fatigue syndrome is rising

quotes:

Bone-deep exhaustion not eased by rest, lasting six months or more. Brain fog. Pain. These and other symptoms are hallmarks of myalgic encephalitis/chronic fatigue syndrome (ME-CFS). People who have it find their symptoms often spike after minor daily tasks, work, and other exertions.

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Below we share a few moments from the experiences of Lili, a basketball-loving, hard-charging college student juggling theater roles, sports, and a heavy course load with apparent ease until crippling fatigue descended.

https://www.health.harvard.edu/blog/chronic-fatigue-syndrome-is-rising-202312193003

 

I have an issue with the description 'exhaustion not eased by rest', because it isn't strictly true in the way it is summarised to that.

Rest is vital and indeed I often have to rest to then get 'proper rest that actually rests me'. It's just that someone 'normal' gets a level of recovery from tiredness or exhaustion in timeframes that are orders of magnitude off for what we need e.g. they'd do a weekend hiking expedition for charity and find maybe they'll recover within the week and feel seriously better after one heavy night's sleep.

But you can't sleep off a medical condition.

So... we get exhausted, and tired even in our 'relative terms for our ill bodies at the level they currently are' and to ease this it is rest that is required - just we do need a lot more following a lot less, and it isn't going to miracously return us overnight to before we got ill. But would you expect any different for someone with RA or PA or lupus or anything else?

I don't think this confusion (I suspect what is intended, and it is a somewhat conflated medical history type question) helps the vile tripe 'taking to your bed' or 'lying in bed all day' (which are done to insult and denigrate as the accurate would be 'locked-in' equivalent terms, and acknowledgement of how it isn't choice or personal failing). I'm also not sure it doesn't underly the misleading advice like sleep hygeine that is generically pushed - as it drives a narrative 'fake it til you make it' or 'act normal, body becomes more normal'?

Now we've at least some science showing and describing PEM is it time this phrase was updated to be more specific and focused onto what we now know?

 

I have at times used the terms "metabolic cripple" / "metabolically crippled".