Travel and ME/CFS

[Guest guest]

I know this is slightly off-topic, but perhaps not in the way I'm asking it.

Many ME/CFS patients can't travel, and I have always had a difficult time

explaining to people -- including other ME/CFS patients who *can* travel -- why

this is so. For me, it has been purely experiential: when I first got sick, I

began crashing for longer and longer periods of time from any trip by car,

train, plane, you name it. It didn't matter who was driving, how well I blocked

out noise or other stimulation, what medication or supplements I took, if I was

lying down the whole time using supplemental oxygen, etc., the crashes became

more catastrophic and irreversible. However, explaining the physiology of this

has been difficult.

In one interview, Hillenbrand talks about crashing for more than a decade

from a simple road trip. To my knowledge, she never recovered.

But what is the physiology of this, and why *can* some patients travel? That's

the part that baffles me, why some patients seem to not crash *permanently* from

attempts to see ME/CFS experts or even travel out of country to get treatments,

etc. I have seen it explained in terms of hypovolemia, but I don't think that's

the whole story.

The infectious disease specialist who diagnosed me with ME/CFS seemed well aware

of all of this, before I was. That was in the early years when I could travel

without inducing permanent disability. About five or six months after traveling

(travel was incredibly difficult then, but I did it), I saw her in her office,

and said I didn't know why I was so much sicker. She calmly stated " you're

still crashing from your trip many months ago. "

From Dr. Myhill's mito testing and the metabolic analysis profile (MAP) test, I

know I'm extremely mito-impaired. But again, I'm not sure that captures the

picture of what travel does to me or to others with ME/CFS who can't travel.

In my experience there are two groups of patients: those who crash but know

their crashes won't result in additional permanent disability, and those who

know additional permanent disability is the norm for pushing much out of bounds

at all. But what physically separates us, as some in the former group are very

sick?

Peggy

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