I managed to catch a couple of hours of the FDA Workshop for ME/CFS this afternoon after my nap. Wow.
This is truly an amazing thing happening - between the patient panel and interactive discussions with the entire audience of patients and public testimony, the FDA is spending two days listening to dozens and dozens and dozens of patients and doctors talk first-hand about their experiences with ME/CFS. This meeting is going to be a game-changer!
If there is any way you can tune in for at least a portion of the meeting tomorrow, you should! Here is the agenda and here is the link to the live webcast.
I am wishing now that I had gone to the meeting myself. I was asked to be on one of the patient panels, but I have been struggling a bit lately and didn't think I could manage it. But I am definitely going to submit my comments (FDA will accept them until August 2).
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Sounds very hopeful!!
ReplyDeleteAgree with Renee, seems hopeful!
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