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Can You Come for a Visit? My ME/CFS Says No
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Anti-XMRV Blog -New post

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Daffodil, Jun 14, 2010.

  1. garcia

    garcia Aristocrat Extraordinaire

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    It really beggar's belief why anyone would do this.
     
  2. Cid Zeke

    Cid Zeke

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    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:



    Truth hurts, I guess.
     
  3. dipic

    dipic Senior Member

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    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.)

    In any case, posting a link only "ups her ratings" if someone on here clicks said link. If you're so vehemently against the blog, don't go to it. I, on the other hand, will continue to frequent her blog as I like to hear what the "opposition" has to say. Again, as I said, if you look past all the venom she spits, she makes some very valid points. This information is important to me, as it should be to anyone else who cares about the current situation surrounding XMRV and it's potential link ME/CFS.

    If you have any suggestions for another blog or website that 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, I'm all ears (or eyes, I guess.) Extra points if it isn't written by, as the poster above me nicely put, (paraphrasing) "someone who doesn't act nearly half their age."

    To be fair though, in retrospect, I did not need to post the link again. I could have pointed Gert and others to the first post, where a link to the blog already sits. I have edited my previous post to hopefully rectify this oversight, but not because I could care if ERV gets a couple more hits from people who come to this board, but out of respect for members such as yourselves who don't condone it.

    Apologies,
    Ben
     
  4. natasa778

    natasa778 Senior Member

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    hhhhmmmmm, no, not really. She does have some BIG gaps in basic virology knowledge - I've noticed a few without even trying to dissect her words of wisdom LOL. Judy would have a thing or two to teach her on retrovirology 101 to put it mildly :D.


    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.
     
  5. redo

    redo Senior Member

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    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.

    The reason why wikipedia is almost always in top is because wikipedia has got a lot of links to it...

    An easy way to circumvent this problem is to use a link shortener link, such as "TinyURL", or "BitLy".
     
  6. V99

    V99 *****

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    Don't agree, you have a mix of people in both areas. Not everyone is emotionally frail, and not everyone is ignorant. It's no different then the general population.
     
  7. dipic

    dipic Senior Member

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    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.

    Ah, okay, sorry for that. That is something I did not know. I thought she was referring to the "hits" a page gets.

    Great advice with the link shortener sites and such. I'll have to try to remember that. Thanks. :)

    Ben
     
  8. ixchelkali

    ixchelkali Senior Member

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    Where do I go to rant and rave?

    Yes, I do think its helpful. Ive had years of people in positions of influence like Stephen Strauss, William Reeves, Simon Wessely, et al, deciding what research gets funded and only funding studies that imply Im not physically ill. Those same people are publishing articles that convince the doctors I see that ME/CFS doesnt need to be taken seriously or treated. The CDC sees to it that my insurance wont cover the tests that might show what viruses or immune deficiencies I may have, because they dont cause CFS, but encourages them to pay for psychological help. I have Psychology Today publishing Mark Boriginis assessment that CFS patients are terrorists of health, in full jihadist mode. And I have bloggers like ERV trying to discredit the scientists whose research might be the breakthrough that would lead to living life again.

    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.

    The things these people are saying have, and are still, obstructing our ability to get research funding. They have, and are still, adding years to our suffering. When we are here among our friends, our ME/CFS comrades, we NEED to be able to rant, rave, call names, and say nasty things about these people. If Im singing Ding, dong, the witch is dead when Bill Reeves gets a job transfer, who the heck else would even know what it meant?

    Sometimes I just need to be able to scream at the injustice, the insanity, the cruelty of it. Sometime I need to rant and rave about what has been done to people with this disease. And so, yes, sometimes saying nasty things about people like ERV is helpful to me.

    Thats a very different thing from making nasty, cutting remarks to one another, in my opinion.





    For the reasons above, I dont agree that we should argue this out on a website like ERVs. Plus, we would only weaken our arguments (as she does) if we posted insulting remarks on her blog...not that she would allow it.

    I agree that we should show one another consideration, that we should argue with one another on points, not on personalities. But if Elliot (for example only, nothing personal) were to say that ERV is absolutely right and brilliantly smart, and I were to say that ERV is a flaming misanthropist who doesnt know her env from her elbow, I would be insulting her, not him. ERV and our respective opinions of her are the point we are arguing. Does she or does she not deserve to have her mouth washed out with soap and to be given a time-out without her toys?

    Okay, thank you, I feel better now that I've gotten that off my chest. :innocent1:
     
  9. ixchelkali

    ixchelkali Senior Member

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    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.



    Good comment. Too bad she wouldnt let you post it. It seems that shes not interested in a free exchange of ideas, I guess.



    Amen to that!
     
  10. jspotila

    jspotila Senior Member

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    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.
     
  11. bluebonnet

    bluebonnet

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  12. ixchelkali

    ixchelkali Senior Member

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    I know. That is the rub. It's a problem, but it brings me back to my question, if not here, then where? I think we need a place where we can be honestly ourselves among others who "get it." We need a place to express our righteous anger. If other people come to read this forum, they are coming to "our place," even if it is public.

    I honestly think that journalists and others are just as likely to decide we are crazy from reading our descriptions of our symptoms, and our talk about taking supplements and using alternative medicine, as they are from our ranting about Wesseley and the psych lobby and people like ERV. Heck, our symptoms sound crazy to me, and I KNOW they're real because I have them. And I don't think we want to limit discussions about those things here.

    It's not just because sometimes I think I have to rant and rave or I'll explode. It's because when I read other people's anger at these things, I feel validated. Yes! This is something I have a right to be angry about. That person is talking about me when he calls patients names. That other person is impeding research that could give me my life back. That doctor is using his position to harm, not heal. That journalist is making remarks that are going to cost me the support of friends. I have a right to be angry. I should be angry! That's the value to me of reading other patients' angry rants about these things.

    I think the risk that a journalist or others reading our righteous anger will use that as evidence that we're crazy is outweighed by the benefit of the support and validation we give one another. The ones that would decide on the basis of our anger that we must be crazy have probably already come to that conclusion. The fact is that we are not crazy. We don't want to drive ourselves crazy by trying to make sure that we appear sane. Not here, anyway, IMO. I think it's enough that we try to be pleasant and reasonable when we're posting responses to news articles, blogs, and such.
     
  13. muffin

    muffin Senior Member

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    PAGE 16 for comments that someone who doesn't deserve a minute's worth of our little energy has now gotten. STOP!!! NO MORE OF THIS KID!!!!!

    HIT CONGRESS, THE CDC, DHHS, THE MEDIA AND NOT THIS STUPID KID!
     
  14. ixchelkali

    ixchelkali Senior Member

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    I agree, but I think the conversation has drifted away from being just about ERV. At least, some of the conversation has.
     
  15. usedtobeperkytina

    usedtobeperkytina Senior Member

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    You can be angry and still be reasonable.

    Tina
     

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