Saturday, April 27, 2013

Slightly Alive: Thoughts on FDA Workshop April 2013

I don't know how to get around this one, but those of us who have been really sick for a very long time may require a long period of treatment before we show much improvement. That's expensive. But it needs to be taken into account nevertheless.
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Some treatments tried in the past were deemed "only works on people sick less than 5 years".  Which raises the question, does it really only work on newer patients, or does it only work on newer patients in the short time of the clinical trial?
When I had the opportunity to meet Dr. Murphree, he warned us that "Rome was not built in a day" and our sleep deprivation wouldn't be cured overnight, either.  His assessment was it would take one year of good sleep to heal for each year of poor sleep, and that was pretty much on target for me.
So it's entirely possible that some of the other treatments that work in 6 months on someone who's "newly sick" might take a couple of years to work for someone who's been sick longer.  But research trials are about getting fast answers, not about waiting for years for results on the long-term patients.
Of course, then there's the other problem, that some of us who've been sick for many years have started to develop other problems (e.g., cardiac insufficiency) that may not be curable.  But we won't know if we don't try.

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