Didn't White do quite a lot of research on post EBV fatigue, and comparison with those who recovered?
The IOM (and now CDC) diagnostic criteria start off with loss of function: "A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities". Only after loss of function are fatigue and PEM mentioned.
That's a lot better than starting with fatigue ... and I like the emphasis on "ability" rather than just doing less.
The entire second visit (which I completed last week) is dedicated to studying PEM. A week of pre-tests, an exercise challenge, and then a week of timed repeat tests. The design was put in place after NIH listened to a patient PEM focus group. At set points after the exercise test, a researcher asked if I felt the exercise had exacerbated any physical, cognitive, or emotional symptoms. She gently nudged me to try to separate effects of being in the hospital (travel lag, bad sleep) from the effects of exercise. Blood was drawn at 1 hour, 4 hours, 24, 48, and 72 hours after exercise, and spinal fluid taken at 48 hours. I also did pre- and post-exercise cognitive tests, fMRI, EEG, and other tests. All of this to characterize PEM and map the shape of it over time. It's a really smart design and the patients who contributed to the focus groups should be thanked.
Sixteen patients have completed visit one and two patients have finished visit two (so are done with the study). About the same number of healthy controls have been run.
I had no idea they were studying PEM in such a way. Should you come across any of these patients who helped steering the study in this direction, @B_V , please extend them my sincerest thanks! And my thanks to you if you were one of them. So we now have a "Team Post-Exertional Malaise" and I am quite happy...
Now I am waiting for the PwME band “Team Critics” to break up. After reading Brian’s posts, it’s clear to me that the NIH is doing way more than I realized. I withdraw all of my previous critical remarks, about the NIH study, because my US tax dollars are helping to fund the most comprehensive scientific study of ME, ever! And that make me... quite happy!!!
