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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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Great to hear. I could't get myself to wake up early for it so will wait for recording.I thought all three speakers did a great job.
My understanding is that the IOM committee briefed congress before releasing their findings to the public
I hadn't heard this info before. I'd love to read about it. Where did you hear/read about the IOM briefing congress?
Solve on FB said:During the Q&A, Dr. Clayton points out that the IOM's job is done, having been called to create a report, which is completed. Through the process, she has become very endeared to our cause and is thrilled that SMCI has held the DC event to help move things forward.
This is a new beginning...
lol Even cranky old Bobs have a sentimental side when they see people like Dr Ellen Clayton and Morgan Fairchild advocating for us!I think I like when cranky old Bobs become sentimental...
Clayton started off stating that the IOM process was started in response to. CFSAC recommendation to convene a workshop of stakeholders to work in criteria. She stopped at that. She didn't ginish the full recommendations - starting with the CCC.
If she was stating that this was in response of the recommendation, she should have read the recommendation in its entirety.
She did in fact say that what CFSAC wanted wasn't what the funders commissioned IOM to produce, and she acknowledges that that has been a source of contention.
The IOM's job wasn't to do what CFSAC wanted - they weren't employed by CFSAC - but what their funders told them to do. I think it speaks highly of Dr Clayton's integrity that she made it clear that there was a mismatch there and that it has caused dissent. She didn't need to mention it at all, let alone read out the full list of CFSAC recommendations and indeed, a focus on that would have distracted from and undermined the advocacy that she was trying to do at the meeting.
I've watched so far Dr Clayton's presentation and Carol Head's, and I think that both of their presentations were spectacular advocacy for us.