Hope123
Senior Member
- Messages
- 1,266
One of the funnier aspects of the videocast.......at one point, the blue screen was playing techno!
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I just got viral test results back from Dr. Rey (Klimas' partner), and the tests distinguish between old and active positive results. The doctors are right that most people test positive.......but not for current activation.After hounding the doctors for over two years, I did finally have a tilt table test: it was 'normal', but it was done by cardiac people, who were mostly looking for heart problems, which I don't have. So far I haven't been able to test viral titers. The doctors just say, "Almost everybody tests positive for those viruses". I'm slogging through the ICC Primer. If it says something about viral titers, maybe that would help my argument.
Dr. Lee, the designated federal official, is overstepping her boundaries. It's ridiculous to NOT draw upon the experience of clinicians and scientists experienced with this illness to come up with an ME/CFS definitions. She's saying that the rest of the medical profession needs to come up with the definition.That would be like the blind leading the blind! Medical professionals who we know already aren't educated about ME/CFS and have a bias against it are going to come up with the case definition?!
I would not want to trust my future on this group.