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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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Speaking of NJCFSA, does anyone know why Ken Friedman's 2009 CFSAC testimony was pulled from youtube? His testimony was so powerful, and he risked losing his position to give that testimony. Does anyone know what happened to him?
Living here in Jersey, I've been to a couple NJCFSA meetings. They were coordinated and attended by a savvy group of fellow patients who were eager to provide insight and direction and compassion even as they struggled with their own illnesses. I would have gone to more but the distance was too great. I have nothing for admiration for them and believe they represent a fine model. I even retained my legal council because of their influence.
kit, I think this might be the video of Ken Friedman you are looking for. If not, it's somewhere else on this YouTube Channel (look on their playlist).