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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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Let's just suppose HIV drugs become a viable treatment option for this disease. What about those of who have such a hard taking any type of pharmaceuticals, herbs, supplements, etc.
Well if XMRV actually causes CFS, and the drugs in question actually shut down XMRV, then I'd probably expect us to have no more toxicity than the average person who would take the drug. A bunch of "ifs"...
aside from the potentially serious immune reconstitution syndrome, don't AIDS patients fare well on antiretrovirals? surely our system is no more sensitive than theirs right?
I'm wondering if using antiretrovirals could excaserbate symptoms initially for most cfs patients because their body begins to actively fight the infection and other coinfections. If most patient have secondary coinfections, the increase in immune system activity could generate a herxheimer reaction. I hope that studies run on the antiretrovirals span enough time to see the long term benefit of the medication if there is one. One of the most difficult hurdle for research related to CFS has been the confounded relationships between effective treatments and symptom severity. Many treatment that are helpful in eradicating infection and boosting the immune system don't show immediate improvement because the actual process of killing of the pathogens makes symptoms worse.