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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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hensue,
I'm curious. I see you say yuck, so i assume you wouldn't want it (have you tested yet?). The way I see it is, you're sick already. The only thing that changes by testing positive is now you know why your sick. And soon there may be ways to treat it. i'm haveing trouble understanding why people think its bad to test positive.
Could you explain your thinking to me, please? I'm just curious
I also don't know that they [NSAID] would impact cytokine/upstream chemokine production at all, and those may be the 'triggers' for the virus she was referring to. I really think she was engaging in pure 'cocktail reasoning' there (as they call it).
Hey Julius, Not necessarily, we just dont know yet. We will have to wait and not worry to much and keep our cortisol down ;-)
Hi Julius and Knackered
Well there is reason not to be too happy; it is not clear at all that people that are sick for a long time, and have xmrv in all their cells, will get better. As dr Mikovits suggested, the later you get treatment the worse chances you get to get better. Medicines that help in initial stages of the disease (stop spread of the infection) may not be helpful in the later stages.
still, I think it would be better to know.
link to the PDF slides from the show, takes awhile to downloadf.
http://www.wpinstitute.org/news/docs/Invest_in_ME_20090529_Mikovits.pdf
yeah I agree, although 'knowing" is pretty relative here since we have no idea of the nature, treatment and implications of the disease. For me; its not that i feel much better knowing, but a bit better I think
'Knowing' what is causing me to feel sick would be a huge relief for me. Even without treatment etc.
I've had so many years of being told i'm crazy, depressed, psychotic, lazy.....the list goes on. Sometime I even start to believe it. Just having that positive test saying 'this is what you have, you can stop searching now'.
Man..that would be a relief.
This is all assuming XMRV is the culprit of course