Welcome to Phoenix Rising!
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.
To become a member, simply click the Register button at the top right.
It's funny - ERV (aka, Abbie Smith) seems like a nice, calm, non-aggressive person when talking in front of an audience (and certainly intelligent regardless.)
Yes, the decision to use antiretrovirals is between a patient and his/her physician. But the vast majority of physicians, even CFS clinicians I suspect, will be hesitant to use antiretrovirals without some of the evidence that ERV says is needed: a way to measure viral activity, testing in CFS animal models, and/or ways to measure what effect the drug is having.
In her current blog, Abbie stresses over and over the point that there is no quantitative way to measure whether antiretroviral drugs are having any effect on a person. And she is correct. For now. But her argument won't be correct for long, because a quantitative test for XMRV (a plasma assay) is coming out of of the NCI this summer.
Good point, dipic. I would never have guessed that the person in this video is the same person who, on her blog, once told someone to "go f--- yourself sideways with a rusty knife."
Judging by her blog I thought ERV was a kid and it's kinda' shocking to see she is not. How does one account for such aggression directed at sick people and professional scientists?
One of the criticisms of ERV in this thread (and others) is that the writing on her blog is rude and disrespectful, etc. But in this thread, more than one poster has said ERV is childish, mentally disturbed, a troll, and I don't even know what else.
How does this help us? Doesn't this thread bear a resemblance to some of ERV's posts and the comments on her blog? Critiques of ERV's posts would be stronger if they stick to substantive issues. Otherwise, the back and forth is just personal sniping: ERV says something nasty and people respond by calling her names. Does anyone think this approach is productive or helpful?
JSpotila, I challenge YOUR neutrality on this issue. If this continuous spew was being directed towards Suzanne Vernon and her projects, would you even be addressing her. Do you think ERV is some lonely voice, crying in the wilderness?
If you think that she has something valuable to say why not ask the CAA to arrange a webinar with her?