If someone has an analogy for their experience of illness that is meaningful to them, then I don't see how that can reasonably be deprecated. None of us can go into another's mind to know what the other person actually feels and if we are to value the exerience of people with ME/CFS then we have to accept their description of their experience of an illness. If jet lag is what ME is like for someone, then surely that is just as valid as if they said it was like meningitis or malaria - of course jet lag happens to be something that more people can empathise with but that's a separate issue. There's no way to know how disabling or distressing one person finds jet lag compared to another, nor breaking a leg, or having a tooth drilled, or intestinal surgery. We each look to find references that are meaningful to us and hope others relate in some way - for patients to deny the validity of other patient's experience because the semantics don't fit would be an unhappy situation IMO.
My basic reference if I need to explain it to someone, is that my base line is like when you've had influenza (proper, not a heavy cold) and then there's that in between stage after about 3 to 5 days after the worst fever, where you can stand up, you can think a bit, you can eat a bit, but everything still hurts, your head feels like it's full of cotton wool and there's a general sense you've been sandblasted. I'd also say (as far as I can remember having one) it's a bit like having a hang over, and bit like the feeling of having been on 50km hike a couple of days ago - or shifted 5 tonnes of top soil, and maybe of having been done over with a baseball bat (of course that's an exageration - I've never had that precise experience but I've been on the end of enough falling object and agressively intended impacts to guess at the likely out come). And at times I'd say'all of the above'. On the scale of things does that not match the level expected for 'having M.E' ? - Would I not qualify as an ME patient because my refrences are not terrible enough ?
I thought Julia Newton's joke was just fine - I don't want there to be researchers who feel they have to constantly genuflect towards the misery of the illness they are looking into. As I see it, everbody gets to be a bit like us a bit of the time even if it is just wo/man flu or self inflicted alcohol toxicity or a bit of over work. Our 'tragedy' is that for us it's not a 'bit' or a bit of the time' - but our being precious about that tragedy doesn't help non patients relate to us, so permanent jet lag seems not a bad starting point when it come to explaining the crappiness of it all.
