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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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Nature article about Judy Mikovits and XMRV

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Jemal, Mar 14, 2011.

  1. asleep

    asleep Senior Member

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    Good point. If anything, the opposite of Nature's implication is true, since it was the refuters (Towers and Wellcome Trust) who put out a press release stating outright that XMRV does not cause ME/CFS. That's an interesting form of "suggestion."
  2. Esther12

    Esther12 Senior Member

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    It's definitely implied that the Levy study will be negative. Anyone who has been criticised by Mikovits or the WPI will enjoy having the P attached to another negative study.

    Seeing as the Lipkin and BWG studies are going foreward anyway, I kind of wish other studies were put on hold. They seem to be adding more heat than light at this point. I'm quite negative on XMRV, but it seems clear that if it is related to CFS, it's a surprising bug, and we're not too sure exactly how to detect it. Testing pro-XMRV labs under blinded conditions seems like the best way to work out exactly what's going on and if there is any correlation.
  3. dannybex

    dannybex Senior Member

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    Hi Esther,

    Where did you get that? Can you quote the section you're referring to? I must be reading a different article...?

    d.
  4. kurt

    kurt Senior Member

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    The word 'claimed' in the scientific sense is not a suggestion the claimant is unprofessional. A scientific 'claim' is a statement based on a researcher's data. This is jargon that unfortunately does sound like the claim is something dubious. But researchers understand and the writer probably used the word correctly. However, I agree that if an article is written for a more general audience, as this one was, the terminology should be less ambiguous to the lay reader. It does sound bad. I think in part this is due to the outside researchers feeling stung by the way Mikovits has responded to them (she can say their studies are flawed, but nobody can say Mikovits' study is flawed, etc). The writer obviously picked that up. And I believe Mikovits is feeling all the support from patients so is not being very delicate in her statements either.

    In my opinion, much of this debate and flack could have been avoided if WPI had handled their discovery as an early stage finding, a hypothesis, and not started testing patients and suggesting they should all be on ART, raising hopes of a cure before there was any confirmation (which we are still waiting for over a year later). In fact, even if there were confirmation, there is still no clear evidence of a causality, that would take additional studies. In other words, if there are MLVs in even a small subset of CFS patients, they might be there as a result of broken-down immune function and not causal of the primary CFS pathology.
  5. Esther12

    Esther12 Senior Member

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    dannybex:

    "As for his motivation to team up with Levy: "I'm just trying to get to the truth. It's my only motive, because this is such a deserving group of patients who need to know what's going on." "

    Hard to pick out a bit when it's so related to tone and implication, but I took the above sentance to indicate that the study was coming out negative. Such a sentance would sound strange coming from someone whose work was about to validate the link between XMRV and CFS.
  6. dannybex

    dannybex Senior Member

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    Well...I kind of get your point, but coming from Peterson, who's worked so hard for 25+ years, I guess I didn't have that initial reaction. We do want the truth, whatever it is, don't we?
  7. Jemal

    Jemal Senior Member

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    There's a few things that suggest to me that the Levy study will turn out negative:

    The bolded part sounds really negative and suggests to me that an infectious cause is not likely, because Levy hasn't found it yet.

    Immediately after that:

    A "response" sounds negative to me.

    And immediately after that:

    So Peterson, who left the WPI because he didn't like their singular pursuit of XMRV, is now helping Levy with this study.

    All in all, the implication seems to be that Levy's study is going to turn up as a negative.
  8. dannybex

    dannybex Senior Member

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    Hi Jemal,

    It's really interesting how different people pick up or zero in on different specific words in their reading of this. :)

    I'll bold a few that stuck out for me, which gives me a positive impression.

    If Levy is using the 'same cell-culture techniques to detect the virus and using samples from the same patients'...wouldn't that mean that this will be an attempt to (finally) replicate their results?

    I don't think Dr. Peterson is helping Levy because he was slighted. He simply (and I think wisely) didn't agree with their 'singular pursuit' of XMRV, because he knows from his long experience that there are many other factors involved -- and all of them deserve to be studied as well.

    ???
  9. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Kurt
    if people are slowly dying from a horrible disease which has no specific treamtent...then taking ARVs or putting "magic" crytals up yer ase while howling at the moon as you hanglide, naked over the CDC, are all just as good as rotting slowly to death in pain at home, eh? ;)

    flippant way of pointing out that at least the WPI are doing somehing *useful* in giving us hope, encouragement, stirring up actual major sh*tstorm that gets funding/researchersinterested, hell maybe even an actual answer/treatment, and fighting against those DAMNABLE psychobabblers burying us under a deliberate blanket of their ludicrous unscientific religous fanatic bullsh*t!

    When yer backed into a corner and going down, it's better to go out fighting. In our cases, it's better to die on our weak knees scremaing bloody murder, than on our belly in silence! ;)
    This is about a LOT more than mere "ivory towers" of science, sigh.

    To paraphrase and adapt from , iirc an Alan Dean Foster book: It's like we've been in a pillow fight, sitting on a log over a precipice, fighting a an army of faceless ghosts exchanged at times for a handful of armoured ogres, each armed with a pillow stuffed with low-grade poison gas!

    300 thousand papers all showing phsycial aspects that ME is real, brutal horribel disease and it's achieved JACK SH*T! What does that tell you about our vaunted "science? It is utterly worthless in the face of "competign interests" that's what :(

    not mad at you, sigh, far from it, not your fault at all and you do a lot of good :)
    I'm just blowing off steam, mad at this ludicrous, sick world we humans have built for ourselves where such an outrage, such stupidity, such waste, such inhuman lack of compassion has occured :/
  10. markmc20001

    markmc20001 Guest

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    asleep wrote:

    Great comments.

    When I read an article like this one it is upsetting because i know the average person might be fooled into thinking incorrectly about Judy or XMRV studies. However, I then see the article picked apart by sharp people here and understand the glaring biased political article for what it is. A biased article like this makes me all that much more confident that the political forces working to derail XMRV science are alive, well, and showing their true intentions to the informed and aware citizens who can see through the propaganda.

    To me this is very telling.

    Kind of like the CBT and GET excercise cures CFS articles, and the dates they are released. Very telling.
  11. Ernie

    Ernie Senior Member

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    You're right. There's always 2 sides to every story as well. I'm afraid we've only heard one version of it and it's coming from a reporter from the UK. Time will tell what the actual facts are regarding all of this and what is fiction I'm sure.
  12. SOC

    SOC Moderator and Senior Member

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    Wait a cotton-pickin' minute!

    This article was not published in Nature. "Focusing on the needs of scientists, Nature (founded in 1869) is the leading weekly, international scientific journal."

    It was published in a British publication, Nature News. "Online, nature.com provides over 5 million visitors per month with access to NPG publications and online databases and services, including Nature News and NatureJobs..." They are published by the same company, but that are not the same journal.

    As a British publication, does it not get the same vetting by the Science News weenies in the UK government that have been screwing up ME/CFS media reports all along?

    I have no idea what the integrity of this journal is but I, for one, am relieved that this was not cleared for publication by the respectable journal Nature.

    Thanks to Mindy K for alerting me to my misapprehension.

    Was I the only one confused?
  13. Ernie

    Ernie Senior Member

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    Yes and we know how the UK likes to report on ME/CFS in the media or so I've heard. Does Wellcome Trust and their articles ring any bells? I can't imagine how this science site could be much different in how they report. Here's the news their blog site likes to promote:


    http://wellcometrust.wordpress.com/about_us/
    About us


    This blog is about science and biomedicine, their crossover with arts and history, and the many other activities related to the work of the Wellcome Trust.

    As a global charity committed to realising the full potential of biomedical research to improve health, the Trust funds a wide variety of people and activities – from new PhD students to senior researchers, from genetics to neuroscience, from museums to plays, documentaries and films.

    We aim to bring you stories from the scientific fields that we are interested in, the “brightest and best” minds that we support, and reports on the range of events, research and other activities that we are involved in.
  14. insearchof

    insearchof Senior Member

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    Sickofcfs and Ernie, thank you for the clarification. Saved me the trouble. Ah The Welcome Trust. Say no more.
  15. markmc20001

    markmc20001 Guest

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    You have a link for that "about us" description Ernie.... a link showing how that news site is linked to/promoting that welcome trust blog?
  16. insearchof

    insearchof Senior Member

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    To clarify

    I believe your correct sickofcfs - but nature online, is part of the Nature Group and is governed by the same publishing house.

    Ernies comments were, I believe in relation to a blog associated with the Welcome Trust here http://wellcometrust.wordpress.com/about_us/ and how they like to report online.
  17. SOC

    SOC Moderator and Senior Member

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    Yes, I said same publisher. :) I'm more tuned to the fact that Nature News is not the reputable journal Nature and is not subject to the same kind of editorial review, so the idea that this was published in "a reputable scientific journal" is not what we thought it was.
  18. insearchof

    insearchof Senior Member

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    Hi Kurt

    In your response to your reply to me at post 97, I agree that clarity is important Kurt, so let us try to find it.

    1. I said Judy *may have* made a simple un emotive statement of fact, I don’t know, I wasn’t there.

    2. I do not recall though, ever having said that Judy has not addressed criticism of her work. She has in Science etc. That is expected of scientists. It is, as I am sure you know having a scientific background, how it delivers us with good science. It is I believe, in part, why there has been the sustained interest in this area. Good science works this way and need I remind you, it cuts both ways as we have seen.

    3.
    What are you referring to exactly in the Nature article and where has she repeated these remarks?

    Please also remember, what has been written is an attribution and not necessarily a fact.


    4. What do you mean by ‘’attacking her critics?’’

    Do you mean pointing out scientific flaw or deficiency in their studies or methodology (which has been addressed), or do you mean personal attacks? If you meant the later, could you please provide source material demonstrating the attacks and on all the persons involved (I assuming there has been more than one, given your employment of a plural term).


    5.
    Then could you kindly explain this remark you made at post 65 to me where you stated:

    6. I refer you further to your post at #65 where unless I am mistaken, your comment there stated that should I trail through everything she has said in the past 17 mths that I would probably find or conclude, the belief you attributed to her there. However, unless Judy has specifically and publicly stated this as her belief, then you are asking me to infer and attribute it to her, which I am not prepared to do (and I must say, I would prefer to use my limited energy to understanding the scientific papers than trying to track down everything Judy or any other scientist has said in the last 17mths, as you could appreciate).

    7. You then go on at post #65 to state that Mikovits *appears* to have generalised the out rage of CFS patients and is directing it at other researchers. Your own words (*appears) suggest that you are engaging in speculation.

    In your most recent post to me (post #97), you refer to ''insinuations''. Let me just say, my view is that insinuations are attributed to material by the reader. They cannot be relied on or promoted as facts.

    I don’t mean to be harsh, but for the purposes of clarity and fairness, unless you can back up your claims here, it will leave me with an impression that you are responsible for the very error you are levelling at Mikovits: speculating on the motives of others.

    Unless you can provide me with some source material in which Judy clearly states what you have attributed to her, then I am afraid that I might have to conclude that what you have attributed to her is also speculation and spin.


    8.
    .

    Who is to say that she has not and it is isn’t being scrutinized by an editorial committee of a more prestigious scientific journal who are not inclined to rush to print? Who is to say, it has not been deferred for publication for any one of a number of reasons?


    I hear your aggravation kurt, but I question whether it is as wide spread as you would like to have me believe. My own observations are that many in the CFS community are grateful for the diligence, and dedication to the through exploration of this one area of science associated with CFS by the WPI, in the face of a great number of challenges. Keen as those of us are for more answers, I think there are those amongst us, that understand that there are many factors at play that precludes answers being delivered in accordance with our expectations and on our time table.

    Finally, Judy and or the WPI cannot be held responsible for what other labs research and or how they chose to spend their dollars. When science dollars are scarce, and politics in these labs/research institutions is fierce- (clamouring for every spare research dollar in support of their studies), their motivations for having undertaken research in this area will have been multi factorial, some of which will undoubtedly also have been self serving.


    I am not sure what this means or who you speak for Kurt,(though I would like to know) but I would like to be clear and say, that you do not speak for me.
  19. Cloud

    Cloud Guest

    Lol, I found it curious that everyone was referring to it as "the prestigious journal, Nature".

    I agree that a lack of defensive response from Dr P does not indicate anything definitive. As I stated earlier, I believe Dr P wouldn't give the article a second glance, much less a defensive response. He has been insulted, attacked, and threatened by much more powerful influence than this journal, and he didn't make a fuss, nor lose stride. I could be wrong, but I doubt he would say a word about this article, even if the statements are untrue. People with integrity tend to not feel threatened as easily.

    Kurt...I know that Dr P has been adamantly against the use of ARV's (for most) from the start, and I haven't heard the rest of WPI stating anything as you say...... "suggesting they should all be on ARV's". They have expressed support for the use of ARV's in certain situations at this point, but to the best of my knowledge, they have not (as you state) suggested that all patients need to be on them. Nor has the WPI led people on with "false hopes" as you state. The WPI made it very clear from the start that they were not saying xmrv causes CFS. They went out of their way, in bold print, to avoid creating such false hopes.
  20. Ernie

    Ernie Senior Member

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    Oh sorry by posts was a bit confusing. I was just showing how the UK science news sites like to mirror their messages it would appear. Not that they were actually connected. But did insearchof figure out they are under the same publishing house? That would be quite a coincidence I would think.

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