Tuesday, September 17, 2013

Mary's new blog post -- GET, PEM, CDC and CPET

In my latest blog post I have added my voice to many others as to why CDC must use two-day CPET testing - and why specialists must define the disease, not bureaucrats. Here is an excerpt:

The amazing thing Staci Stevens and Chris Snell found was that high-functioning patients may score the same as deconditioned controls (the afore-mentioned couch potatoes) in one day of exercise - but on the SECOND day, the controls' scores don't change, whereas the patients' scores plummet IN HALF.

Which makes sense if you have a good understanding of this disease. But is really quite an astonishing finding for outsiders.

AND it is the best argument we have with which to make the case that graded exercise programs can hurt patients. Can make them worse. In some cases, can leave them paralyzed (something no one in government wants to talk about).

So if you want to measure that cardinal symptom of our disease that is often called post-exertional malaise (PEM), or post-exertional worsening of symptoms, you need a TWO-DAY test. Otherwise, we don't come off any different than someone who is not in shape.

Which means that by refusing to do the two-day test, CDC's results will make it look as if graded exercise was a good idea.

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Read the entire post at http://slightly alive.blogspot.com/

Mary Schweitzer

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