Andrew
Senior Member
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- Los Angeles, USA
Even though I think the new name and criteria will work to our advantage, I think a mistake was made with the diagnostic tree. Here is my email to IOM.
Hello,
I am looking at the diagnostic algorithm posted on your website here: http://www.iom.edu/~/media/Files/Report Files/2015/MECFS/MECFS_DiagnosticAlgorithm
The first statement is not supported by the IOM diagnostic criteria, nor is it supported by what I heard said by the panel at the February 10 webcast. The first line says "patient presents with profound fatigue." I see nothing in what I've read and heard from the panel that supports this. They have made clear that this is not a fatigue-centric illness, yet profound fatigue is the starting place for a diagnosis to be made. I didn't even mention my fatigue to the first doctor I saw because the orthostatic intolerance and cognitive problems were overshadowing everything else. Remember, it is not just fatigue that gets worse with activity. It is all symptoms. And fatigue is not required to be the prominent presenting symptom.
I ask you to consult with the panel and raise this issue. I believe that the first line of that decision tree is an oversight that is not supported by the findings of the panel or the spirit of what they told us at the presentation meeting. I also expect that if you check with the panel they will want to correct this.