This poll is a follow-up to last week's CDC Conference call with Dr. Beth Unger and Dr. Ian Lipkin.
It is a hypothetical question (unless you actually ARE enrolled as a participant in the study!) about assessing how many among us, IF we were participants in the CDC Multi-Site Study, would agree to take part in a 2-day cardiopulmonary exercise test [CPET] (Stevens Protocol) -- and if not, why not. **The assumption is that if we were in the study, we'd already have agreed to and be signed up for the 1-day CPET.**
If you participate in the poll, and you vote "No", please consider posting a reply, listing the concerns that would prevent you from partaking in a 2-day test. If you vote "Yes", additional comments are also welcome.
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More Information:
Only 2 consecutive days of CPET testing (approximately 8-12 minute test) provide PEM and metabolic data -- data not available in a 1-day test. Dr. Unger outlined her concerns on the call about the hardship a 2-day test would place on patients in explaining the CDC's decision to exclude the 2nd day of testing:
As I mentioned on the CDC Conference call thread, it might be interesting for the CDC to see our poll results, too, no matter what they are. My own opinion is that the 2-day test is an imperative. I wonder if the CDC could consider including 2 subsets -- those who do only Day 1 and those who do both Day 1 and Day 2.
If you are not familiar with the Stevens Protocol (2-day CPET), you can read this Phoenix Rising article by PR member aka "Lannie in the Lymelight", who underwent the 2-day test and described it wonderfully -- with photos of each part of the test!
Also, see PR member Jennie Spotila's excellent 4-part article series on PEM on CFIDS.org -- especially Part 2 of the Series that describes the results found by using the Stevens protocol.
It is a hypothetical question (unless you actually ARE enrolled as a participant in the study!) about assessing how many among us, IF we were participants in the CDC Multi-Site Study, would agree to take part in a 2-day cardiopulmonary exercise test [CPET] (Stevens Protocol) -- and if not, why not. **The assumption is that if we were in the study, we'd already have agreed to and be signed up for the 1-day CPET.**
If you participate in the poll, and you vote "No", please consider posting a reply, listing the concerns that would prevent you from partaking in a 2-day test. If you vote "Yes", additional comments are also welcome.
_____________________________________________________
More Information:
Only 2 consecutive days of CPET testing (approximately 8-12 minute test) provide PEM and metabolic data -- data not available in a 1-day test. Dr. Unger outlined her concerns on the call about the hardship a 2-day test would place on patients in explaining the CDC's decision to exclude the 2nd day of testing:
"The two-day test would require an additional overnight stay for those patients who travel long distances to attend clinic and excludes those who are most severely affected because of the heavy physical toll. In developing the protocol, we strived to find a balance between testing that would yield meaningful data in the broadest representation without placing an unnecessary burden on the patients." [ transcript reference from Jennie Spotila's Occupy CFS blog.]
As I mentioned on the CDC Conference call thread, it might be interesting for the CDC to see our poll results, too, no matter what they are. My own opinion is that the 2-day test is an imperative. I wonder if the CDC could consider including 2 subsets -- those who do only Day 1 and those who do both Day 1 and Day 2.
If you are not familiar with the Stevens Protocol (2-day CPET), you can read this Phoenix Rising article by PR member aka "Lannie in the Lymelight", who underwent the 2-day test and described it wonderfully -- with photos of each part of the test!
Also, see PR member Jennie Spotila's excellent 4-part article series on PEM on CFIDS.org -- especially Part 2 of the Series that describes the results found by using the Stevens protocol.