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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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It's funny - Ms.Smith and Ms.Mikovits are near opposites in such interesting ways.
While I believe Judy lacks adequate knowledge and the ettique of a professional scientist, she has an overwhelming amount of empathy for those who suffer from ME/CFS and related or similar illnesses.
Abbie on the hand, knows what she's talking about regarding erv's but clearly has no empathy for people with ME/CFS. Or if she does, you would not be able to tell from her blog posts.
I don't know why there is so much aggressiveness toward those who come on here (people like Sue.) They may be ignorant but that makes it all the more tragic. And instead of politely pointing out the negative consequences of their actions and trying to educate them, for some reason ERV and the majority of her fans belittle and ridicule these persons who are so physically and emotionally frail. And they do it knowingly.
It's pathetic. It's disgusting. As an ME/CFS/WTF sufferer, and someone who opposes much of what the the WPI, but mostly what Judy has said and done regarding XMRV, I come to this site for unparalleled insight into the world of retrovirology. Unfortunately, I have to do it begrudgingly because I have to filter through the words of a 27 year old grad student with a PhD who ironically acts practically half her age. (Not to mention, again, a good chunk of her followers who seem to have the same maturity level. "Don't mind me, I'm just here for the lulz." ...seriously?)
Yeah, yeah, it's your blog, freedom of speech, you can say what you want - but it isn't becoming of any of you.
I commend KevinS above me (and others alike) who have been able to speak intelligently and rationally without feeling the need to be rude, condescending, or outright malicious to people that they realize are struggling just to get by in a scary, confusing world. It's sad that such intelligent people can't be more civil and compassionate toward others.
Your behavior is an embarrassment and you should feel ashamed.
dipic why are you still posting links to her site after it has been said over and over that it only ups the rating?
I think it was pretty clear in my post why I did so. (By the way, you'll have to excuse me, as I typically never read these threads, so I have little knowledge of what has been said in them in the past.)It really beggar's belief why anyone would do this.
Abbie on the hand, knows what she's talking about regarding erv's but clearly has no empathy for people with ME/CFS
They may be ignorant but that makes it all the more tragic.
these persons who are so physically and emotionally frail.
Cool, I haven't been able to delve into it as deep as I'd like to but I do try to get as much of the basic and most important stuff as I can and just keep an eye on whatever else is in the peripheral. Hopefully, if/when my health ever starts improving I'd certainly like to be more involved in other threads here.Thanks Ben, as for somewhere "analyses and critiques the current situation on XMRV replication, potential ARV treatment for those of us who are XMRV+, the WPI's (in my personal opinion) poor PR, etc. on a frequent basis..." you are at the right place on Phoenix Rising.
Ah, okay, sorry for that. That is something I did not know. I thought she was referring to the "hits" a page gets.redo said:Dipic, what she means about the links giving her ratings is that the more links a site get, the more "valuable/important" Google (and other search engines) think the site is. The more importance, the higher up the site will be in the search engine results page.
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?
Moderator: All persons deserve consideration in this forum. Or at least they deserve not to be torn apart and insulted. My suggestion is that if people feel a need to argue with someone's blog on another site, that they do so on that other site. Our concern is with what happens here, so please don't force moderators to have to step in and do our thing. Argue on points, not on personalities.
Asking for civility is not the same as defending someone. It is not a case of "for us or against us." It is a case of applying the standards that this forum asks of us all. If ERV wrote her stuff in this forum, she wouldn't last ten minutes before we would be onto her and almost certainly escorting her to the door.
Youre probably right. We have bigger fish to fry. But even a lightweight like ERV can cause damage. She can reach the next generation of researchers and convince them that ME/CFS is not worthy of study. Still, I guess you're right; I've given her more energy than she deserves.Again, just ignore this child. We have adults with MDs and PhDs and decades of clinical/research experience that have to be dealt with since they are the ones that can and have done real damage to CFIDS research/funding and our image. Our image -- you know, crazy, lazy, depressed, and all the rest that our real enemies, the educated sociopaths Reeves and Weasel et al, have used against us for 30 years.
Since I have tried twice now to post a comment on ERV's blog but not had either of my posts approved, I thought I would share them here
Amen to that!Thinking calmly, I'm rather glad ERV is not on our side. One intemperate supporter can do more damage to a cause than large numbers of opponents.
And the horrible Catch-22 of that situation is that if I respond in kind, I may sound crazy and convince people that they are right. So when I am able to respond, I exercise restraint. I try to sound reasonable. I dont even describe the full array of my symptoms to my doctors, because I need to sound sane and rational, and my symptoms are so widespread and bizarre that they would sound crazy.
So where do I get to vent? What do I do with my anger against these people? I agree that when were presenting ourselves in public as it were, when were writing letters to the editor, or commenting on blogs that have a general readership, we dont want to call names or stoop to their level or say anything that will confirm or justify our bad press. We need to be credible.
But if we cant vent our anger here on this forum, among our fellow sufferers, to the very people that these jerks are maligning, what are we to do? For many of us, this forum is the only place we have where we can talk to other people who have this disease. Its the only place where we can find anyone else who gives a damn what ERV or Wessely or Borigini might say. Its the only place where we can call them names without people thinking it proves we are nutters.
A very thoughtful post, ixchelkali, and I think you've captured how we feel about this forum as a place to talk to other people who get it. The only wrinkle is that this forum is public. We know that members of the media have read discussion here (because they've quoted it). So I think there is a chance that when we vent to each other, those conversations are not just among us friends. Other readers, whether journalists or others, could draw the conclusion from angry discussions here that we are nutters, especially since they are unlikely to understand the context of our anger.