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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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I certainly didn't say that. Please reread my statement - actually I deleted it out of concern that it could be construed that way . But anyway, that was absolutely not the thrust of my statement.
Cort said:I think its unfortunate that she was not invited to give a talk but what I'm more concerned about, after thinking about it, is William Switzer giving a talk on how to use assays find XMRV....That is the big issue now...that is the issue CFS needs to overcome...Why give it to him and not to the WPI assayist? She was actually able to find it.
Furthermore, while I welcome and encourage the involvement of the CDC in research into XMRV, Mr. Switzer, the guest speaker on Assay Development, to date has been unable to detect XMRV in any blood samples. While exploring why methods do not work contributes valuable information to the field, so does information on methods that do work.
The original Science paper, along with Response to Comments on "Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome on methods of detecting XMRV, demonstrate that Dr. Mikovits and Dr. Ruscetti are the leaders in this area right now. They have published studies detecting XMRV in blood and other studies have corroborated these findings. Drs. Mikovits and Ruscetti should also be presenting on "how to find XMRV and Assay Development.
It is possible that Dr.M realized that it would be better (in the grand scheme) to have Dr. Ruscetti speak. He is a much bigger name and would be, at this juncture, a bigger draw.
Yes, she want to present, but she has been told she is not allowed to because she is a patient advocate.Did someone actually get confirmation that she applied and was "not allowed" as opposed to opting out.
William Switzer giving a talk on how to use assays to find XMRV!!! Is insane.
but the threads did not achieve any concensus that I could see, so there's no simple summary, unfortunately.
I think your wrong, we're all very ill people trying to muddle through and sort something out, something which means a great deal to us. We are following our hearts. We simply can do nothing more then try our best, we all want the same thing, an end to this illness and I understand you might not see much point of this thread but I saw a great deal more.
Prostate Cancer
(keynote lecture) Dr. Eric Klein, Cleveland Clinic, Cleveland, USA
I cannot go into detail, but I would caution you that these letters are not helping their position.