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At CFSAC last month, Dr. Beth Unger seemed determined to quash PEM as a requirement for ME.
At CFS Central
www.cfscentral.com
Mindy Kitei
At CFS Central
www.cfscentral.com
Mindy Kitei
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(my bold)CDC's head of CFS research Dr. Beth Unger said at last month's Chronic Fatigue Syndrome Advisory Committee meeting that she couldn't figure out how to measure post-exertional malaise (PEM)--the hallmark of ME--and thus believes problems would ensue if PEM is a mandatory symptom.
"My concern about making post-exertional malaise an absolute criteria for diagnosis is if you don't have a consistent, validated way of measuring it that clinicians can use easily, it's big barrier," Unger explained at the meeting. A few minutes later, when committee member Donna Pearson asked again about PEM being included in the criteria, Unger replied, "I think everybody agrees that it's very characteristic and a very important symptom, and clinicians will tell you that they can recognize it, they can illicit this information from patients, but to make that quantifiable and to make it easily implementable is another question...."
...Thus, Unger knows how to measure PEM. So why is CDC trying to bury PEM? After all, PEM is the most important symptom of the disease--and PEM distinguishes ME patients from people diagnosed with CFS who in reality are just depressed. But maybe that's the point. To lump bona fide ME patients in with the depressed. That way you don't get meaningful data or treatment, and the band plays on...
So true, Esther. Therefore, fatigue should not be one of the required symptoms for diagnosis.We don't have a consistent validated way of measuring fatigue either.
We need to replicate the study over and over so they cannot refute. This should be our priority.
Can we start writing to every senator, send letters. What can we do???@inester7 It doesn't even sound like they are refuting them, it sounds like they are IGNORING them!
It seems like the more evidence that comes out to prove PEM actually exists in ME patients, the more the CDC insists that it's nothing.We need to replicate the study over and over so they cannot refute. This should be our priority.
It seems like the more evidence that comes out to prove PEM actually exists in ME patients, the more the CDC insists that it's nothing.
@Scarecrow What about those who are bed bound? They could have PEM just by rolling over or trying to have a conversation if that is the state of their body and puts them over the anaerobic threshold. There needs to be an alternative way to measure the oxygen and other gasses to demonstrate PEM without such a physically demanding test.
There probably is. Gas analysis can do a lot, even without exercise. Indeed I had that kind of gas testing done back in 1993 for CFS! That was Dr Andriya Martinovic. My metabolic function was consistently low. Indeed, not exercise physiologists but metobolism researchers use this kind of testing. Emphasis on exercise testing is because it shows the day-after crash, and because they are exercise researchers.
I think that we are essentially in agreement @Gingergrrl43 except with respect to the exact relationship between a CPET and PEM.@Scarecrow I read all your posts but do think that PEM absolutely must remain in the definition and diagnosis of CFS or it will become even more watered down until it is unrecognizable.