Saturday, December 8, 2012

Insufficient Data / by Occupy CFS

Insufficient Data
Jennie Spotila/ Occupy CFS
December 4th, 2012

One of the most frustrating aspects of coping with CFS is the lack of
definitive data. A PubMed search for "chronic fatigue syndrome" yields
4,877 results (as of today), but as a patient on the front lines I have to
make treatment decisions based on theory, supposition, and anecdotal
evidence.

Case in point: I'm wearing a heart rate monitor and reducing my activity to
stay below my anaerobic threshold based on a few studies that show CFS
patients have disruptions in their energy metabolism. There is even a
published case study showing that following this pacing method and short
duration exercise leads to improvement in functional capacity and activity
recovery.

But because my anaerobic threshold is so low, I exceed my heart rate limit
just by climbing 12 steps. An expert advised me to reduce my activity to
stay below the heart rate limit, even if it meant stopping halfway up the
steps to rest or using a shower chair. Another expert endorsed the use of
beta blockers to lower my heart rate. That topic is worthy of a separate
post, but there are patients who have benefited from this approach. Sue
Jackson has written excellent posts about her experience doing just that,
and she credits beta blockers with drastically improving her functional
capacity. When I asked the first expert about beta blockers, the expert
responded that beta blockers would not change my actual anaerobic threshold
but would mask when I was exceeding my limit by lowering my heart rate.
So how do I decide what to do?

The full post can be found here:
http://www.occupycfs.com/2012/12/04/insufficient-data/

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