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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I'm really grateful to Rebecca and all she's done for us. This is an excellent interview, Cort. You did a great job. It was very informative and I learned a lot.
I wish there was more education happening about PWC who are severely ill. Many of us would be there on the hill if we could be. We need to be believed by our own about this situation.
The CME materials Rebecca gives her doctors do those of us who are severely ill a great disservice as you know.
They're fine for PWC who have a milder case or are in a milder stage of this illness.
starry
I think the NIH is really trying to help, and I truly believe that Dr. Eleanor Hanna is the reason we have any most CFS funding from the NIH. She is a real champion for this illness. I dont know that I can say the same for the CDC.
What was missed in the discussion of the SPARKS document was that it did, for first time, portray CFS as a serious disorder - and that did help. The Vermont group, for instance, was finally able to the New Jersey Consensus manual adopted by New Jersey because the new wording on the CDC website convinced lawmakers and doctors that CFS was a real and serious disorder.
Were not refuges, the illness isnt an STD, were not cute. Watch And the Band Played ON and see how the AIDS community changed thing. Thats what we need to do. When they had Advisory Committee meetings the room was packed. I dont think we had more than 10 patients in the room at one time at the last dozen CFSAC meetings...
Because were not like AIDS patients were not dying in droves its more difficult for us. If people with HIV werent dying wed still probably not know what causes AIDS. One staffer on the Hill actually told me that this disease doesnt matter because its not sexually transmitted...
The NIH responds to the number of grants they receive and those grants reflect researcher interest. If, for instance, 90% of the grants are for cognitive behavioral therapy (CBT) and those are the best written grants, those are the ones that will be funded. The CDC spending on CFS remains a mystery to me.
Ive also been trying to convince them that they need a paid Executive Director. As our professional organization theres so much they could be doing but right now theyre an all volunteer organization staffed by already very busy people. Theyve agreed to hire an Executive Director if I can come up with the money. So one of my next projects is raising about $50,000, if you have a few thousand dollars you would like to donate to this project, please contact me at pandorarebecca@aol.com.