Saturday, May 25, 2013

Slightly Alive: Testimony to CFSAC - May 2013

"City of Hope in Los Angeles was founded to get patients with tuberculosis off the streets. Where is the City of Hope for patients with ME or CFS?"
TB patients are known to be contagious.  It was a public health and safety matter to get them off the streets.  CFS seems to only be contagious in the earliest stages, so a City of Hope would be only for our benefit, not for the benefit of society ... and since we're presumed to be lazy fakers, why reward us with free room and board?
"As Irish patient and advocate Tom Kindlon puts it, "If graded exercise therapy were a drug instead of a treatment protocol, it would have long ago been banned by FDA." There are too many adverse responses, and (frankly) not much evidence of success.

"Post-exertional collapse, post-exertional dysfunction, post-exertional crash, post-exertional relapse – whatever you call it, is there really any debate any more over whether it exists?

"Shouldn't that be the first thing you tell doctors?

"I can tell you that it's the first thing we wish they knew."
Unfortunately, in my experience, when you try to tell them that exercise wipes you out, they latch onto deconditioning as a cause and will argue you into exhaustion that you just have to exercise yourself back to health.
I have led doctors by the hand through the thought process that it is absolutely impossible to become so deconditioned so quickly that within a week you go from able to walk two miles to being exhausted from walking a couple blocks.  And after getting them to admit that such severe deconditioning could never happen that quickly, they promptly lose that thought and go back to the mindset that you just have to get yourself re-conditioned by exercising.
Because, although we patients know this is a hallmark of ME/CFS, doctors don't!  CDC hasn't told them, and when patients tell them, it's brushed off as women don't want to exercise because sweat will ruin their hair and makeup.  "Stop making excuses and go exercise!  You'll feel better."

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