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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Article: Four Viruses! Alter Paper Confirms Retroviral Findings in CFS

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 24, 2010.

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  1. Dolphin

    Dolphin Senior Member

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    Well I would argue as I just did that it isn't easy to extrapolate from the blood donors in the Lo study to the CDC sample. They weren't heavily screened with a physician examination, detailed blood testing, etc. They may be a bit ill themselves with some condition including CFS, FMS, etc. I can't put my hands on information on the controls in the Lombardi study - can't see much in the supporting material. Other people may have more information - I try to keep up with all the CFS literature which means I can't concentrate on XMRV.

    Time will tell I hope about the XMRV/MLV testing issue, etc.
    One thing I know is the empiric criteria are rubbish. But the CDC have published dozens of papers using them and have largely been unchallenged.
  2. Bob

    Bob

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    I suppose it might be possible that the CDC managed to screen out all cases of MLV-related virus infections before they even tested their samples...
    But, personally, I think that it would be giving them far too much credit to associate them with that level of competence and intelligence!
  3. Otis

    Otis Señor Mumbler

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    That's an interesting consideration, one that I haven't heard raised before....
  4. Sam Carter

    Sam Carter Guest

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    It was the subgroup of patients from Tony Komaroff's clinic that tested 96 % positive (24/25), but that doesn't really help us much because we don't know how the other 12 patients were characterised (ie. what diagnostic criteria, if any, they satisfied) - if they are similar to Komaroff's patients then the figure of 96% looks a whole lot less robust.
    [*]

    Dr. Mikovits (or representatives from the WPI) have stated various figures regarding the rate of XMRV infection in the original Science cohort; until something is published to the contrary, the only reliable figure we have is 67%.

    The paper I've cited before (http://www.landesbioscience.com/journals/virulence/article/MikovitisVIRU1-5.pdf) contains a number of errors that have been discussed previously on the forum.

    ETA:
    [*] or equally, Tony Komaroff's patients could be highly atypical.
  5. Otis

    Otis Señor Mumbler

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    Sam,

    Would that be the problems with the tables not being complete/correct? I think Judy (or come to think of it I believe it was Max Pfost who paid us a visit here) promised to update.

    Thanks,
    Otis
  6. Bob

    Bob

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    Judy Mikovits' 97% figure is a well established figure, and the 96% in the Alter study stands on its own as a reliable figure.
    And the CDC achieved a 0% detection rate.
    Therefore I stand by my original post.
    You don't have to agree with my point of view, of course.
  7. Sam Carter

    Sam Carter Guest

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    Hi Otis,

    From memory, the (perceived) problems were:
    - missing patients (only 93 out of 101 were displayed)
    - percentage positive was wrong: the paper said it was 75% but it is at least 79% (can't be sure because of missing data)
    - How many of the 101 patients test positive for XMRV gag sequences by nested PCR? The original Science paper reports 68 such patients but this has gone up to 73 in Virulence despite the 8 missing patients.(I'm happy to be corrected on this point.)
    - no definition of "positive" eg. is patient 1108 positive? He / she is cDNA +ve but is negative by all other assays.

    Sam

    ETA: no definition of "highly viremic". Some of the issues were discussed on this thread: http://www.forums.aboutmecfs.org/sh...fectious-Agent&p=106278&viewfull=1#post106278
    ETA2: I've reworded point three to match what I wrote in the thread cited above.
    ETA3: WPI 1118 is PCR -ve in Figure 1 of the Science paper but PCR +ve in the Virulence paper.
    ETA4: ETA3 is wrong - my bad. I shouldn't be squinting at pdfs at 2.21am...
  8. cfs since 1998

    cfs since 1998 *****

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    As testing methods are becoming more reliable the MLV-related virus is being detected in larger proportions. "Point your browser and search" is not a legitimate argument or appropriate response.
  9. Cort

    Cort Phoenix Rising Founder

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    V99 is no longer a member of this Forum. I'm sure some people will be upset with that but it just got to be too much. It was my decision alone.

    I have had numerous people complain about her style of posting and several people have intimated they will longer participate on the Forums if its going to be like this. The last straw came when someone asked me to remove his introductory story because he felt, given the way things are, that pieces of it could be used against him.

    While many of V99's posts were initially fine she/he increasingly over the last few months refused to engage in constructive dialogue. In the end the effort to keep V99 engaged in the kind of conversation I, at least, am trying to promote here - was not worth it. If you would like to know what 'rules' she broke - the best would probably be something about engaging in behavior so disruptive to the peace of the Forums that I felt she was damaging them and creating the kind of environment that I (and others) do not want here.

    I take complete responsibility for this - it was my decision alone.
  10. leaves

    leaves Senior Member

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    That is so sad. I loved v99's sense of humor and intelligence , that will be missed. It is very good for the forum to have people that are smart, stubborn and independent thinkers, it improves the information and the quality of the forum. I agree that this thread was terrible. It made me very distressed.
    It's a pity that when people stop communicating and start preaching all this wonderful diversity turns into polarization and intolerance. I watched it happen, but did not know what to do about it. Sad.
  11. Cort

    Cort Phoenix Rising Founder

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    My impression was that she started out as a nice poster. I didn't agree with every one or even quite of few things that she said but she was open....and willing to look at both sides of an issue. At some point,though, I felt she just dug her heels in - obviously not all the time but much more over time. A couple of weeks ago we were in another uproar and I felt she was on verge of leaving - she, basically, so much as said that...I did my best to defuse the situation and we went on.

    When I get emails from people who say they are edge because they might unintentionally use words the wrong way or slip up somehow then somethings really gone wrong. I regret what happened intensely...for V99 and everybody. All I can say is that, although I was very frustrated at times and I'm sure that frustration leaked through into my posts - I know it did - that I tried to interact with her and reason with her in as evenhanded a manner as I could....and in the end it hardly worked at all. Honestly, I'm baffled at the way things turned out.
  12. Lynn

    Lynn Senior Member

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    I think Cort did the right thing.

    I also think it is sad because we want diversity in opinion. I did not understand why V99 could not word her questions and arguments in a way that protected others right to have an opinion. But I think I am not alone in trying to find the science that was understandable by those of us who are not scientist and skipping the vitriolic posts .

    Lynn
  13. leaves

    leaves Senior Member

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    Cort I know that at this point, there was no good solution, things went too far and the forum became damaged, and many members distressed. I hope we can prevent this from happening. As it is we already lost quite a few people to another forum. Nice, smart people, fellow patients. The reason? I'm not sure whether it is the differences in opinion (caa and wpi). I like to see myself as a wpi supporter too, many here do. I think you as well, Cort? Anyway I've always felt comfortable to speak my mind. ( maybe that's just because I don't have any interesting opinions tho, lol)
    I think the difference is the approach; they seem to be in fighting mode, looking for enemies. Cfs patients probably have been docile for too long so that is not neccesarily a bad thing. However this aggression when it is directed to the wrong people, when it is intolerant or unconstructive,, then I don't want to be part of it.
    Anyway, to each his own. We don't all have to hold hands, and if they are happy on their forum that is great. I just hope that patients can somehow work together, look for similarities, respecting differences, cut eachother some slack.
    For many patients this forum serves an important function, threads like these can be very damaging for wellbeing. Although I am always eager to hear different opinions, also from the other forum I hope that they can respect the dislike of antagonism on this forum. Sometimes it felt a bit like they were just, for fun, doing "terrorist attacks" here, without really caring for content, just using it as a tool. I know that this is probably not true, but that is how it felt. Making me feel disrespected.
  14. Wayne

    Wayne Senior Member

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    Hi Cort,

    I don't think anybody rejoices when someone is banned. But nobody benefits when a disruptive poster continues to ignore all kinds of pleas/requests to stop their antics. I think your decision to put a stop to this is a good one, for all concerned, including V99.

    I hope you don't spend too much time agonizing over this. From what I could gather, it almost seemed V99 was goading you into having to make this decision, and almost looked forward to being banned (for whatever reasons). Just my observation.

    Sorry you (and all of us) had to deal with this all.

    Wayne
  15. lancelot

    lancelot Senior Member

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    I am so glad you got rid of V99. BRAVO!!! She brought nothing but headaches to most members here with her never ending bickering, babbling, and sexism. This is the reason why i left prohealth when you have a few bad apples like nofool, gapsych that ruins the forums for very sick PWC that cannot deal with all their (ed - language )crap. Now that she is gone, i can celebrate by joining this forum today! Can you do us all one more favor, Cort, by cutting off the head of the other lockness, awol? Thank you very much! This forum is looking much more lovely now.

    Bye lancelot
  16. awol

    awol *****

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    Wayne, it is posts like this that create the clash. And false accusations about what people have said in trying to make their points. If all of you people who seem to want to do nothing except attack me for articulating some criticisms with Cort would just back off and let me discuss things in a civil manner with him, these situations would not happen.

    The pile-on after Dolphin's mostly well-meaning and well articulated criticism (except for that McCarthyism bit) of what I said was caused by a posse of attack characters, not me. If you do not recognize this, then getting rid of me will solve nothing. Your site will ALWAYS be filled with ridiculous wars.

    Banning V99 is your loss. Actually dealing with the information and criticisms she put forward would have been the mature approach. You are right Cort. She started out as a very nice poster. And on the other forum she is still a very nice poster. Things went sour at one point. When that happens, it is pretty much never the case that a single party is to blame. So colour this however you want. There are reasons why things went sour here and I have tried to explain them clearly and politely. Then the posse of attack characters was set loose on me too. What a site this is.
  17. lancelot

    lancelot Senior Member

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    Why don't you hold hands with v99 and stroll on out of here? Everyone will be at peace and *relaxation* for once. thank you!
  18. Wayne

    Wayne Senior Member

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    I think Cort made it quite clear that the way you've been communicating has NOT been civil. I don't either. Most people here seem to agree with this assessment.

    awol, you and this forum are not a good fit. It doesn't work for you, and it doesn't work for us. Why not just move on, for everybody's sake?
  19. awol

    awol *****

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    No, he said he disagreed with my points. He addressed them partially, and then I responded, again, quite politely. I still do not have a response directly from him after that. How about you try backing off and letting him answer?

    Tell me what was the least bit civil and considered about what Recovery Soon said and then ask yourself why he is not the one being invited to leave.
  20. lancelot

    lancelot Senior Member

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    we are saying this as gently as we can. think of it as a good break-up where no one needs to ever fight again and everyone gets what they want which is PEACE. We thank you for your time here and we wish you the best elsewhere. take care.

    BYE
    lancelot
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