That many of the well-known journals refuse to publish ME/CFS research, so the researchers must use alternative publications. She implored the committee keep in mind that there is quality research in those locations.
Schweitzer is good. emphasizing viruses; anaerobic metabolism shown by CPET; Keller noding her head; emphasizing NO GET. will be bedridden again if Ampligen taken away.
Letter from 50 experts mentioned, yay!
let's use biomarkers we have, don't go back to the drawing board for symptom definition, don't loose another generation to the disease. Let's study the disease already, it's been 30 years!
Casey Fero died at 23 from myocarditis because he exercised and got a job like he was told to by the 'experts.' how many other Caseys are out there. Don't go back to the drawing board to do another definition, study the disease already!
Jennie mentioned the need for a sensitive and specific definition. Patients with other treatable diseases are harmed by being thrown in the Fukuda CFS wastebasket, which results in a delay in an accurate diagnosis.
Overall Jennie's was weak, I have to say. Sticking together and insisting on expert's demands- adopt CCC would have been infinitely stronger and better for patients. But like she says, she was only going to speak for herself. The only person speaking for herself that gets 7 minutes.
Yay, Mindy Kitei, talking forcefully about 50 expert letter; Reeves fake definition is 'insanity'; PEM is the hallmark; Unger intentionally not doing 2 day CPET to hide the epidemic. IoM recommends CBT and GET for MECFS; IoM must recuse itself! Excellent!