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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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This can't be emphasized enough. So many horror stories in our community of misdiagnoses, false negatives, etc. That's partly why I've been gratified to see VIPDx state explicitly that they MAY have false negatives for XMRV. They've really helped me to do my due diligence, by being very honest that their test is not yet 100% accurate. If you're positive, they're pretty sure you've got XAND. But if you're negative... may need to shoot at the basket another time. And that's OK with me. They also have suggested that patients only re-test in 3-6 months. Forums like this help hugely when patients choose to post their lab results - and then share what they have learned about interpretation. Not the same as an expert interpretation. Altho sometimes better!In the meantime, if you ever question a lab result, don't hesitate to have it repeated!
Think back now to those lovely 20-year old tubes of blood that the British Medical Journal used for their XMRV/CFS study. Were the pre-analytical methods as robust then as they are now? Makes you wonder what they're smoking, huh?Don't want to rain on this thread's parade but I'm well aware of poor results that can come out of MANY labs due to pre-analytical issues (specimen drawn at wrong time, specimen drawn in wrong tube, specimen not properly handled (needed to be drawn in a pre-chilled tube, drawn , place on ice, centrifuged in a refrigerated centrifuge, etc. etc ) in addition to basic testing procedures.
Julius, what changes do you mean?