If a ME/CFC diagnostic test has to be made available, what success rate of separation of CFS from non-CFS patients do you expect realistically?
- 50-70%20%
- 70-90%47.6%
- 90-100%32.4%
466 votesFinal results
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At this moment, we are at the mark of 75%. Where are we failing? We are mostly missing the mark with mild CFS patients. With controls our failure rate is 10% and that is mostly with EBV positive non-CFS patients. Long way to go as we are testing many different parameters.
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I still don't understand how we differentiate general fatigue from CFS. I see lots of people claiming fatigue, but they are still working, etc, which to me see seems like something else.
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I agree with the other replies, PEM is the difference. My first time on the merry-go-round I managed to return to work full time. I was lucky and my threshold for triggering PEM increased over ~3yrs until I was about 90% well. I could still trigger PEM, but it took more to do so.
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How are the mild cfs patients in your study initially diagnosed? Via symptoms or blood testing? Thank you for your great efforts!
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That's a million dollar question for which I do not have any full proof answer. At this moment I am working with patients who are evaluated at different German CFS centers by specialists and are officially diagnosed as CFS. So that means we are working with blinded samples.
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That's sounds great to me, certainly an improvement on the status quo. If I understand correctly:
- a 25% false negative in mild CFS
- a 10% false positive in controls (if they have EBV)
Thank you so much for your persistence & innovation. & patient engagement
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Thank you for your hard work. I suspect disease progression is important when using the diagnostic test. Perhaps damage is not significant enough to be detected at mild cases. (I may be talking nonsense).
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May not possible. It will be puzzling to think why we humans have actually learnt to live with herpesviruses almost for our entire life. Is it actually beneficial? Is not it true that we feel the full force of these viruses, when we take them out from latency.
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