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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. Daffodil

    Daffodil Senior Member

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  2. lansbergen

    lansbergen Senior Member

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  3. omerbasket

    omerbasket Senior Member

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    I don't even want to read "erv".
    Let's just ignore that writer.
     
  4. Adam

    Adam *****

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    ERV is a very sad person.

    I pity her.
     
  5. Elliot

    Elliot

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    I don't see what is wrong with suggesting taking anti-retrovirals right now when there is no science to back up (yet) that they are effective is an attack? More of a wise decision? I get that people are desperate but taking anti retrovirals which have no evidence to show that they can get rid of XMRV- which we don't even know has a causative effect with CFS/ME yet, is wise? Especially considering antiretrovirals can have some pretty nasty side-effects such as liver or kidney failure! I'm trying to see the other side of the argument but I'm really struggling here chaps. :/
     
  6. pollycbr125

    pollycbr125 Senior Member

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    I believe DeeTee is one of the posters on the bad science forum which probably explains the negativity
     
  7. lansbergen

    lansbergen Senior Member

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    It seems like badscienseblog and evrblog teamed up.
     
  8. redo

    redo Senior Member

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    She begins her post with an example showing that she knows nothing about CFS.

    Not only is it wrong, I find it offensive. CFS patients aren't simply "not feeling well". The majority have a quality of live so bad that every day is miserable. Many have such intense symptoms that they think about ending their life daily - and many do. I would be glad to simply be "not feeling well".

    CFS is a diagnose where you have to rule out everything else. Everything else isn't ruled out if you simply go to the doctor one day, because you aren't feeling well.

    There's a significant difference between deciding to give a treatment a go when you have intense symptoms that makes your life unlivable, compared to if you're "not feeling well".
     
  9. V99

    V99 *****

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    Certain anti-retrovirals have been shown to have an effect on XMRV, I think it was a study by John Coffin. I'm also pretty sure, well not sure, could be wrong, will most definitely be wrong, going to say it anyway, but he didn't say this so skip ahead, no truth in the first part of this sentence, that he may have said if he were in this position he would consider taking them himself. So some experts disagree with student Abby (erv).

    POST ALTERED TO REFLECT ERROR.;)
     
  10. Elliot

    Elliot

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    But I think what erv is trying to explain is that there's not been a causation proven between XMRV and CFS, and also antiretrovirals are specially suited in dosage and such. Could you link to the study by John Coffin if possible where he said he would consider taking them himself? Sounds a little..bad to say that, considering the effects of antiretrovirals and the lack of clinical research into its use for treating XMRV. As you said there hve been a few studies showing certain anti retrovirals have been shown to have an effect on XMRV, but there's not been any clinical trials and such on animals/people.

    E: Also to the people taking antiretrovirals, all the power to you and I hope they work for you all.
     
  11. Hope123

    Hope123 Senior Member

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    Dr. Coffin said (paraphrase here) that the quickest way to see if XMRV was the cause would be a trial of antiretrovirals but he did NOT say that he would take them himself if he were in our situation. This was from Rrr's informal interview with him here during which he also said he was reluctant to give interviews because of the risk of being misquoted. If you got this somewhere else, pls. tell us. If it was from a personal e-mail, I'd be cautious about disclosing it without his permission since it gives our detractors more ammo to hit us with.

    I know we're limited by brain fog here but we need to be careful when referencing what some one said.
     
  12. omerbasket

    omerbasket Senior Member

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    This annoys me. Who the hell is "erv" to tell people what to do with their own life? Antirerovirals are dangerous? Well, so is skydiving. And people are allowed to do that. So why wouldn't very sick people be allowed to take antiretrovirals, even the science right now is far from being completed? It's their life and their choice. Would "erv" agree to suffer all those years until the research is completed instead of them - letting them to live a healthy life for those years? Why doesn't erv strike so rigorously the use of antivirals, which many ME/CFS patients recieve for years without finalised science on that issue as well? ME/CFS patients that decide to take antiretrovirals are agreeing to make a clinical trial on themselves. It is absolutley their, and only their, choice.

    Now, besides that: erv's blog is always against the XMRV research regarding ME/CFS. It's as if Wessely himself writes it... Because it has new negative posts regarding XMRV and ME/CFS many many times in a month.
     
  13. Elliot

    Elliot

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    Of course it's their life and their choice, I was not arguing that. Erv seems to be trying to explain the dangers and lack of scientific evidence to support taking antiretrovirals at the current moment. People under desperation can do really rash things. Some people may completely wish to take antiretrovirals to see if they will help but I'm betting there's a subset of people who are grabbing anything they can..and that's really dangerous. This isn't paracetamol, it's really toxic stuff that can make you seriously ill; so you could end up with being seriously ill from the antiretrovirals, and seriously ill on top with ME/CFS, which hadn't been treated by the antiretrovirals for whatever reason (wrong drug, wrong dosage, xmrv not being causative, etc).

    Thankyou for the correction too Hope123, people really need to be careful not to mis-read/mis-quote what the experts say.
     
  14. mojoey

    mojoey Senior Member

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    Elliot,

    I think if you ask people what their take is on ARVs, you'll get a much more mixed response. It's because this advice is being tied to the source that people simply do not want to lend her words merit by discussing them, whether or not her advice is sound. Just read some of her earlier comments/posts about WPI, Andrea Whittemore, and Judy Mikovits. The most objective part of her entire blog is her url.
     
  15. acer2000

    acer2000 Senior Member

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    The issue with ERV isn't that her points don't have some valid basis, its that she's really immature and obnoxious about it in her posts. They read like a post on TMZ.com or something. Even if she believes XMRV has nothing to do with CFS (which is her right), she should respect the fact that people with CFS are really very ill and need help.

    Her blog is nothing but sensational link-bait in my opinion. She could just as easily state her points intelligently and back it up using science and leave it at that. But instead, she goes out of her way to insult ill people.

    Its sad, really... because she probably could have something to add to the discussion if she'd tone it down.
     
  16. Robyn

    Robyn *****

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    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
     
  17. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    I second that emotion!!! go robyn!
     
  18. Daffodil

    Daffodil Senior Member

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    well the ARV's are working on people....so....not much more to say is there lol
     
  19. dean

    dean

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    Hi. Did I miss something....What is your source for the evidence on this....
     
  20. V99

    V99 *****

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    Sorry guys, it wasn't Coffin, it was Goff. Someone kindly gave me the correct bit from his interview with Vincent Racaniello. TWIV broadcast on 4/4/2010 - http://www.virology.ws/2010/04/04/tw...tephen-goff/):


    -19:30
    VR: This virus seems to be sensitive to AZT,

    SG Correct

    VR: But I don’t think any of the other anti retrovirals, right?

    SG: I think there’s a little paper surveying the RT drugs, that’s right. AZT is the one that’s best. It tracks with the behavior of all of the murine leukemia viruses in that regard.


    VR: ”A number of people with the disease (cfs) have wondered if they should take AZT, even now when still we don’t know exactly but is there any up or down side to doing that?”

    SG: “So, the people that I’ve talked to say they think that the side effects of AZT, at this point anyway, out weight the benefits, the potential benefits.”

    RV: So you’ll feel worse.

    SG: You’re more likely to have difficulty just taking the AZT as of course many people do. It’s not as thought you couldn’t live with it. People do, but?

    RV: With HIV, which was fatal…

    SG: You took the side effects.

    RV: Here? Although people with CF would say that their lives are ruined without something , so…you could almost equate it to being HIV fatality, so maybe they’re willing to take the risk.

    SG: Right

    RV I get a lot of e-mail about this and a lot of comments

    SG: I certainly wouldn’t take AZT without knowing that I was viremic at least. If I was convinced firmly that I was actively replicating virus, and I was at the end of my rope with the disease, I guess I might consider AZT as a treatment of last resort.

    RV: As long as you understand that the side effects might be terrible.
     

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