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Lessons from ME/CFS: Finding Meaning in the Suffering
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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. V99

    V99 *****

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    Hope 123.
    Don't read this in the wrong way, it's getting late and I have no intention of being rude, honest. It's just a sum up of what I was thinking. eekkk
    I didn't say I remember correctly, and this is a discussion, so I'm not bothered right now that I thought it was Coffin. I didn't use a quote either, as I didn't have one, and was hoping it would jog someone else's memory. Sorry Coffin. Always prefer to use quotes, let them speak for themselves in full. Again sorry Coffin, you are the man. he he.

    As for ERV, got to agree with acer2000 & Robyn. She's got a Mikovits bee in her bonnet, and wants to swat it. It's don't matter that the bee may come with a sting. I say it's your body, do what you want. No one has the right to dictate the future for any of us. Personally I wouldn't take the ARV at the moment, but no one is offering anything else. As for her fear of drug resistant super XMRV, true that could happen, so wouldn't she be better off asking why they haven't banned blood donations yet? and when will they spend good money on research into the CFS XMRV association? After all, what happens if a patient with CFS needs ARV for another retrovirus? What if any of those 4% of controls take ARV's for anything else? Same problem.
  2. V99

    V99 *****

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    Just before I say goodnight, I will go and alter the bit in my first post so it is really obvious I wasn't sure. Night.
  3. Kelly

    Kelly

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    link provided

    Dr. Coffin has done considerable work regarding anti-virals as it relates to HIV, but not regarding XMRV unless it is not yet listed in PubMed.

    Dr. Ila Singh who is working with Dr. Bateman in Utah has. See "Raltegravir Is a Potent Inhibitor of XMRV, a Virus Implicated in Prostate Cancer and Chronic Fatigue Syndrome"

    http://www.plosone.org/article/info:doi/10.1371/journal.pone.0009948

    However, note the wording, "If XMRV proves to be a causal factor in prostate cancer or CFS, these discoveries may allow for rational design of clinical trials."

    No one has proven a casual connection between XMRV and any human disease at this point in time. That isn't a conspiracy, it is simply a fact at this time. Good science takes time and money.

    As for ERV, if doctors started doing chemotherapy without specific parameters and protocols on anyone who walked into their office people would also correctly question that. ERV makes some good points as well as some points that are opinion based because she lacks a full knowledge of the biomedical research regarding CFS. ERV has stated that she does not question whether CFS is an actual disease or not - just the conclusions drawn based on the research she is familiar with thus far. Enlighten her using peer reviewed research.

    I think it fair to say that if you want the freedom to express your opinion you have to give others the same right. Opinions are like belly buttons - everyone has one. If you disagree with ERV prove your point citing peer reviewed research. Bitch slapping may feel good, but it reflects on the person doing the slapping just as much as the person slapped. It also makes the person slapped less inclined to support your point of view or to listen. That's not just ERV that is human nature.

    That said there are however studies regarding the use of valcyclovir against those cases of CFS caused or perpetuated by EBV. Query PubMed under J. Montoya or AM Lerner for starters.
  4. lululowry

    lululowry Senior Member

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    Athens, Georgia
  5. Daffodil

    Daffodil Senior Member

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    my evidence is that i feel better and so do others i speak to who are on the drugs. there are only a few people so far, though.
  6. Elliot

    Elliot

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    That is anectdotal evidence Daffodil, but I'm glad it is helping you. I'm assuming you're being supervised by a doctor throughout this, yes?
    And an excellent post Kelly :) As you said it's better to counter others opinions with facts and evidence, preferably scientific journals. It's a lot better than just going into blind fist throwing rhetoric which doesn't reflect well on the fist thrower!
  7. ixchelkali

    ixchelkali Senior Member

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    Sure, ERV presents some sound arguments against taking anti-retrovirals until more research is in. And if that were all she did, maybe I could agree with you, Elliot, but that isn't all she does. Surely you noticed that she also takes some very strong potshots at the WPI, Judy Mikovits, and ME/CFS patients. I find that unwarrented and unbecoming, and it undermines her arguments. Not to mention, she's arrogant, condescending and snide.





    I have to agree with Acer2000 (post #15), that ERV goes out of her way to insult sick people and that has nothing to do with the science.

    Exactly. That's why I find it hard to give credence to what ERV says.
  8. Robyn

    Robyn *****

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    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
  9. ahimsa

    ahimsa Senior Member

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    The issue that I have with erv's blog has nothing to do with the arguments and everything to do with the attitude and tone. I understand that people have widely varying views on the research that has been done regarding XMRV and ME/CFS. That's fine.

    I have no problem with someone being skeptical of the XMRV connection to ME/CFS or being opposed to treating it with anti-retroviral drugs. I do have a problem with someone who refers to ME/CFS by the phrase "Chronic Fatigue", who does not seem to know even the basic case definition for CFS (any of them!), and who calls folks some pretty nasty names (e.g., she called Mikovits a c***).

    The blog entries display an incredible immaturity in someone who is supposedly a grad student. If I were in a position to hire her I would decline based on the tone and style of what she has written on her blog even if I agreed with her arguments. Mature scientists can generally argue their point without having to use swear words and name calling.

    In short, this erv person is not someone who is dispassionately analyzing the science. As someone else said, there must be some underlying issue that is bugging her (a "bee in her bonnet") but who knows what it is. At any rate, I would say that there's not much point in reading her blog and even less point in trying to have a discussion with her.

    Better to let it go and ignore her. I won't even bother to click on any links - why give her blog more hits?

    Just my two cents.

    Marjorie
  10. acer2000

    acer2000 Senior Member

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    Even if she was... she's not being factually accurate. She's just as guilty of bending the facts to get a rise as anyone she criticizes. For example: in comment 27 someone asks how - if XMRV doesn't exist - did the germans find it in BAL from 3% of healthy people and 10% of immunocompromised patients?

    ERV responds:

    So besides the over the top obnoxious tone, there are some issues with ERVs response. She is acting like she is certain that it is idiotic to look in Bronchoalveolar lavage for this virus. Well basically, I doubt that is the case. The Emory study where they infected monkeys and then looked in the tissue explicitly stated that they A) couldn't find it in the blood past about 1 week of infection, and B) that study showed that the infection indeed disseminated to the lung tissue. So it seems *totally reasonable* for someone to look in lung for this virus. Bronchoalveolar lavage gets at the lung and XMRV was found by Emory in the lung.

    See: Organ and Cell Lineage Dissemination of XMRV in Rhesus Macaques during Acute and Chronic Infection

    In fact, given the monkey model basically didn't find it in the blood, I think it would be great if someone looked in those other tissues as well. (GI, Lymph node, cervix, etc..) Perhaps thats where they will find the "free virus" that ERV claims nobody can find anywhere in XMRV infected patients. Well... they haven't looked anywhere but the blood - so you can't state that at this point.
  11. onebush

    onebush Guest

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    I stopped reading aftger the first paragraph! We do not need to read this kind of crap!
  12. Forbin

    Forbin Forbin

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    The best way to respond to erv...

    [video=youtube;2h2ZixoCCWI]http://www.youtube.com/watch?v=2h2ZixoCCWI[/video]
  13. garcia

    garcia Aristocrat Extraordinaire

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    Elliot this was the same kind of argument that Wessely et al. used to justify their quick & dirty negative study on XMRV in CFS. "We are just trying to protect the patients". I have nothing against the argument per se. I have everything against the people making the argument though since they are the very people who choose to denigrate us at every turn, which makes me somewhat suspicious of their true motives to say the least.

    Personally I get my health advice from the ME/CFS experts, not from failed psychiatrists and misanthropic bloggers with "mother issues".
  14. V99

    V99 *****

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    Kelly
    Yea I couldn't remember who it was that had looked at ARV's & XMRV. There was the AZT study: Xenotropic murine leukemia virus-related virus is susceptible to AZT. Sakuma R, Sakuma T, Ohmine S, Silverman RH, Ikeda Y. http://www.ncbi.nlm.nih.gov/pubmed/19959199

    I don't believe any one here has said that XMRV has been proven to be the cause, or even mentioned a conspiracy. However, it is obvious that the three negative studies have not cleared up the issue, and we need a replication study. After all patients aren't looking to be diagnosed incorrectly. Kelly you some it up in one line, good science takes time and money, unfortunately this is the problem throughout CFS research. Little money and little good science.

    Usually that would be an excellent suggestion, but she's not interested. She started her attack because to her the science did not add up, she couldn't understand it. At that time it seemed she was only going after a small research institute. Then when much bigger names were used to show some of her arguments were illogical she took this attack to another level, kind of like a bully. The funny thing is that even now she finds it difficult to take on the bigger names in her blog.

    She's confused.

    I don't think any one has said that she should be gagged, but when her mouth starts spouting hatred & bigotry it's not the same game any more. This is not about freedom of speech. After all she censor's many who try to cite peer viewed research.
  15. natasa778

    natasa778 Senior Member

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    Amen.


    Forbin thanks for that :tear::tear::tear:


    To whoever posted the link first: please delete that link, having it here ups her rating in search engines
  16. floydguy

    floydguy Senior Member

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    I have to disagree with this sentiment. You are making a major assumption here that the world is a rational place. Most things get done based on passion or resolve, not on what comes out of the New England Journal of Medicine. I've spent a lot of time in politics and business and I can tell you that MOST things don't get done based on rational analysis. A pretty powerpoint based on emotion beats out a rambling ugly presentation almost every time (or something from a medical journal that most people have never heard of).

    I have to admit I really don't understand people who are seem so "concerned" with what others are doing. Don't you have enough to worry about concerning your OWN health? Maybe you'd like to lay out your own treatment strategy so others can analyze it for cost, safety and effectiveness? Or are you okay with being ill - perhaps even afraid to be well again?
  17. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Don't mind the opinion, but my being a southern lady, I would think some respect and gracious words would bring more to her viewpoint. Her vernacular is just over the top, and unfounded allegations of unethical conduct does not lend credibility.

    As we say in Alabama, she sure is rude, bless her little heart.

    Tina
  18. Kelly

    Kelly

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    You are correct, the world is not a rational place - that would be the human factor and yes, passion drives science, but the scientific process like the journalistic process has strict protocols that when adhered to bring order and consistency to the process. Is the process perfect? No. Once again the human factor. But, as you know from your own area, when making an effective argument the best course is to use the "language" of the opponent. In this case not ERV's snarkiness - that is just rude and sophomoric - but rather the language of the peer reviewed scientific process.
  19. V99

    V99 *****

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    I understand what you are saying about journalism Kelly, but this is a forum, not a blog or newspaper.
  20. Elliot

    Elliot

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    Compassion? Empathy? Concern for my fellow ME/CFS sufferers who are in a very dark place and reaching out to anything that could potentially make them better, whether that be from snake oil merchants or from unproven medicine. The side effects can be very serious, in regards to antiretrovirals and have no evidence yet that they'll stop XMRV; we don't even know that XMRV causes CFS yet!
    It's nice that you're insinuating I would like to remain ill, yes of course. ME/CFS is a breeze and watching my health deteriorate is hilariously exhilerating along with watching my family's horrored faces fills me with the utmost glee. But taking antiretrovirals that have not a shred of evidence they could help but could give me serious side effects making my ME even WORSE, is rational of course.

    Also N'thing what Kelly said ^

    Can't people have a discussion without 'shouting down' rhetoric? I'm getting quite fed up with it to be honest. You question or try and think critically and you are accused of not having me/cfs or not wanting to get better. There is a gray area, a veritable mid-point to debates and discussion, perhaps you should learn that in future.
    And as I have said before, whilst I don't agree with it, I hope the antiretrovirals work for any of you who are taking it and you see your illness improve or even go completely!

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