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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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oh, and to the extent that the previous CDC failure to follow DeFreitas' methods changed the approach at the CDC this time, we can thank Hillary for that. Her book exposed it. Without that exposure and the patient anger afterward, then they might have done XMRV same as they did DeFreitas. But there are thousands of eyes watching this time, the challenge is on them, and all of this because we know what happened with the DeFreitas virus research. And the reason we know is because of Hillary. She not only served us, her work was a public service.
Tina
While practicing in Charlotte, NC and based on continued evidence of unusual immune disturbances by flow cytometry including CD4 depletion (ICL) in 15% of CFS patients which was investigated in my clinic and dismissed by the CDC as clinically irrelevant and continued high RNAse-L activity (1994), I contacted Elaine DeFreitas PhD at the Wistar Institute who ultimately found HTLV-II-like genes associated with CFS (1991). Her work was unfortunately assaulted by the CDC that claimed either an endogenous RV sequence that lighted up in cases and controls using her primers (per Dr. J.W. Gow) or null responses to cases and controls (per CDC scientist). Elaine argued that these two scientists with diametrically opposing results manipulated the magnesium concentration which affects the primer stringency and got whatever result they wanted, to make their opposite claims. Her proposal to physically run the assays side by side with the CDC scientists to see if these results could be replicated was dismissed by the CDC. Dr. Gow would later publish his opinions (1992). Left unfunded by senior administrators at the NIH and the CDC, the search for a retroviral link in CFS dissipated and was lost until Judy Mikovits PhD, operating out of the independent Whitmore-Peterson Institutes, revived the long search. I congratulate her and the Whitemore-Peterson Institute.