1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
Discuss the article on the Forums.

Dr. Mikovits to answer questions Science!

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Lesley, Mar 20, 2010.

  1. Lesley

    Lesley Senior Member

    Messages:
    188
    Likes:
    0
    Southeastern US
    Dr. Mikovits to answer questions in Science!

    From the WPI Facebook page:

    Hopefully this will clarify some of the questions about the methods and cohort.
  2. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    439
    Raleigh, NC
    Good for her! Great idea. (Probably should have done it awhile ago but still a great move :)). That will be helpful in a number of ways I think. It will clear up the questions about that study - and maybe it will contain information that will assist other groups in studying XMRV. It should help settle the ground and reassure the research community and should, I would think, allow researchers to bore in on key factors in the hunt for XMRV (methods?) and not worry about other factors (cohort?) - a good thing. Nice to see.
  3. Gerwyn

    Gerwyn Guest

    There is more than enough info available in the public domain now to carry out a replication.

    If you have a recipie for baking a cake and dont use it you cant blame the person supplying the recipie when your cake turns out to be a failure

    Even worse if you then also use different flour and then blame the people providing the recipie for not saying where they got their flour from
  4. Esther12

    Esther12 Senior Member

    Messages:
    5,262
    Likes:
    5,439
    When I mess up my baking, I always find someone else to blame.

    It will be interesting to see what this new Science piece says.
  5. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    439
    Raleigh, NC
    :) Nice come back Esther.

    Is there or isn't there? Dr. Mikovits in Santa Barbara said they had to search multiple times over multiple samples from some patients to get a positive. That wasn't in the paper. I realize it is in the public domain but I don't think patient conferences are necessarily where researchers go to get their data. Some will miss that. Getting it out in one place in Science will get everyone's attention. I hope they will state why culturing is necessary.

    I know she says it's because of low viral loads but everyone knows that and no-one else has felt the need to do that yet. That makes me think that they or we are missing some information. I think researchers doing project read the original project closely. They saw that culturing was there and chose not to do it. I can only assume that they didn't feel it was necessary. It'd be great to hear either why they didn't think it was necessary or why she thinks it IS necessary.

    There are two scenarios here I think;

    XMRV is more difficult to find than expected - so you do need to use certain techniques to find it
    XMRY is not more difficult to find than expected - WPI made a mistake somewhere. The DeFreitas things went down the mousehole where if it wasn't frozen blood that was the problem, then it was the enzymes, or the DNA extraction or the types of patients...it kind of went on and on. I'm not suggesting that the WPI is doing that; if more and more studies turn out negative, though, its going to be harder and harder to figure out how they ALL went wrong. Hopefully that won't happen.

    We've heard rumors of a nice April surprise - hopefully so. I don't think anyone has a really good explanation for everything thats happened. One would think that one positive study using certain techniques would turn it all around.
  6. Kati

    Kati Patient in training

    Messages:
    1,972
    Likes:
    1,289
    I think any extra information or clarification information should be welcome at this point. Scientists that have very little knowledge about ME/CFS and reading about 3 non- so-said -replication studies have to know. I am thankful that Science is willing to go deeper in the topic of XMRV and decided to do this. I am looking forward to read what "our" Dr Mikovits has to say.
  7. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    5
    Gerwyn has explained several times why they should have known, as virologists, that they would need to do some of these procedures.

    And WPI says they have always been available to talk with other researchers if anything needed clarification. Dr Mikovits has explained to the public why the culturing is necessary. I can't imagine that she or one of the others would not have been willing to talk to any of those European researchers, had they asked.

    So, unless Gerwyn is wrong, which could be true, and Dr Mikovits is lying, which could be true (I don't believe either statement is true), then those FAILED studies had more than science behind their failures.

    Like the politics of the psych lobby? The money of the disability insurance companies such as UNUM that have funded so much of the Wessely groups "research" and is at this moment, "advising" the UK government on Welfare and Disability? UNUM, the disability insurance company that is reported upon elsewhere on the forum by news outlets in Scotland, as having offered "Vulture Awards" for employees who denied the most claims and which company has been described in UK newspapers as a "rogue firm"?

    Google "fraudulent research" and you get over 4 million hits. http://www.google.com.ni/#hl=en&sou...udulent research&gs_rfai=&fp=2f41a9b28dd30e75

    A former editor of the British Medical Journal says:
    Even when journals discover that published research is fabricated or falsified they rarely retract the findings, according to Richard Smith, who was also chief executive of the BMJ publishing group.

    When journals decide not to publish studies because they suspect misconduct, they often fail to alert the researchers' employers or medical authorities, such as the Department of Health and the General Medical Council, he added.
    http://www.guardian.co.uk/society/2006/may/03/health.medicineandhealth

    http://www.plosone.org/article/info:doi/10.1371/journal.pone.0005738 Even PLoS One is on to the problem. They say that known research fraud is just the "tip of the iceberg".

    The fact that the European studies found ZERO XMRV, while it has been found in some percentage all over the world, ought to be red flag, regards their methods, their cohorts or their motivation. Why were they in such a hurry that they couldn't pick up the phone or send an email to WPI? Why was the "peer review" on the first study done in 3 days? Why did McClure's editorials never reveal that she was defending her own research, while promoting the false idea that WPIs cohort all came from "an outbreak"? Not exactly pure science, IMO.
  8. kurt

    kurt Senior Member

    Messages:
    1,132
    Likes:
    176
    USA.Earth
    What this could mean is that some researchers have submitted rebuttals to the original Science article. WPI then has a certain amount of time to respond. Usually that is six months, and April will be six months since the original article. That probably means WPI has been sitting on the rebuttal response as long as they could, for whatever reason. So if this is a response to one or more rebuttals, we should see both the rebuttals and WPI's response in the April issue. This will be interesting, if this is a rebuttal response, because the researchers who submitted the rebuttals usually also have a chance to answer the responses by the original author. So there could be some back and forth discussion.
  9. Gerwyn

    Gerwyn Guest

  10. Gerwyn

    Gerwyn Guest

    it could mean anything or nothing no factual knowledge available just idle speculation
  11. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    747
    Human nature and the psychology of scientists

    Hi all,

    As an old research scientist (I'll be 68 in April), I would like to speculate on the basis of my experience in similar situations as to what might have motivated the follow-on researchers to do what they did in terms of not contacting WPI or asking for sharing of samples. (When I mention my experience, I'm referring to a few episodes of this sort that I experienced from the inside. One of them was the so-called "Cold Fusion" fiasco that took place a few years ago. Others were less well known outside the particular scientific specialties, but I lived through several of them.)

    Here's what I think went on in the present case: People who work in a certain field of science for a few years begin to think that they are pretty good at it. When something new comes up, as in this case, they often believe that they have a very good idea about how it should be checked out, and they don't think they need to consult with any other research groups. It's really a matter of pride in one's own ability and in the ability of one's immediate colleagues.

    The other factor that tends to prevent scientists from contacting other researchers is that they are in competition with them, often for funding, and always for credit for new discoveries. Even if an individual scientist might feel like it would be a good idea to contact another scientist in another institution to share some information, there is often pressure from their coworkers or their institution not to do so. So scientists often isolate themselves from other scientists, and they share their new thoughts only with colleagues in their own group or with a few others whom they know and trust, often because they were at universities together during their studies.

    It is a strange combination of wanting to share information for mutual benefit, while at the same time wanting to make sure that one (and one's institution) benefits from any discoveries. What usually has to happen is that some larger body or the common funding agency has to institute a coordinated effort to exchange samples or to call a meeting of all the researchers involved, and hash it out together. Otherwise, the various groups tend to "stand pat" on their results.

    In the case of the cold fusion fiasco, the U.S. Department of Energy was the funder for essentially all the labs involved. The DOE put out the word one afternoon that each of the labs was to have a representative in Washington for a meeting at 0800 the next day, and we all hopped onto red-eye flights. That was a very interesting meeting, and things were pretty well resolved shortly thereafter, though there were some hold-outs for a while after that.

    I also remember attending semiconductor conferences at which a researcher from one particular company would give a talk in the presence of representatives of other competing companies, and they would assert that they had solved a certain problem, but they would not divulge how they had done it, because of company proprietary information or patent issues. I wondered why they bothered to get up and talk at all, if they were not going to explain what they had done. But money is a big driver in situations like that.

    Closer to the interests of this group, a few years ago at the IACFS conference a researcher from Japan gave a talk on research to find biomarkers for CFS from spectroscopic analysis of blood. He claimed that they had identified a certain peak in the spectrum that was characteristic of CFS, but he didn't say what substance in the blood it represented. During the Q and A period, I stood up and asked him what it was. Guess what! He wasn't telling! I think they were working on getting a patent.

    I think that whoever it was who said that the explanation for problems of this sort can usually be traced to human stupidity (or other unfortunate characteristics of human nature such as greed or pride) rather than conspiracy was right. Well, anyway, that's my two cents. By the way, I also know that human beings are capable of some very good things, so don't get me wrong!

    Rich
  12. Gerwyn

    Gerwyn Guest

    Yep i go with stupidity and ego it happens so often " my techniques are the best "etc bad science but human

    This is how good the science peer review process is

    Very general journals such as Science and Nature have extremely stringent standards for publication, and will reject papers that report good quality scientific work if editors feel the work is not a breakthrough in the field. Such journals generally have a two-tier reviewing system. In the first stage, members of the editorial board verify that the paper's findings — if correct — would be ground-breaking enough to warrant publication in Science or Nature. Most papers are rejected at this stage. Papers that do pass this 'pre-reviewing' are sent out for in-depth review to outside referees. Even after all reviewers recommend publication and all reviewer criticisms/suggestions for changes have been met, papers may still be returned to the authors for shortening to meet the journal's length limits. With the advent of electronic journal editions, overflow material may be stored in the journal's online Electronic Supporting Information archive.

    Anyone care to read the PloS one criterea. Of course we know that the BMJ has admitted to breaking its own peer review proceedures for the"groundbreaking" Dutch study
  13. Gerwyn

    Gerwyn Guest

    In case anyone is interested these are the Plos one criterea

    "PLoS ONE is built on several conceptually different ideas compared to traditional peer-reviewed scientific publishing in that it does not use the perceived importance of a paper as a criterion for acceptance or rejection." That is certainly different

    "Instead, PLoS ONE only verifies whether experiments and data analysis were conducted rigorously and astutely and leaves it to the scientific community to ascertain importance, post publication, through debate and comment:[2]"

    There we are then all we need to be is rigerous and astute should not be too hard should it!!!! We will publish and worry about it later

    astute (-stt, -styt)
    adj.
    Having or showing shrewdness and discernment, especially with respect to one's own concerns. we should have no problem with that criterea

    “ "Each submission will be assessed by a member of the PLoS ONE Editorial Board before publication."

    Jounalists should be ok to evaluate science shouldn,t they?





















    "This pre-publication peer review will concentrate on technical rather than subjective concerns and may involve discussion with other members of the Editorial Board" There do not appear to be any virologists on the board peer review is going to be a teeensy bit tricky!

    " If published, papers will be made available for community-based open peer review involving online annotation, discussion, and rating.[3] " There we are then sorted we will worry about proper peer review after we have published
  14. Gerwyn

    Gerwyn Guest

    Blaming others for ones own shortcomings seems to be common practice
  15. natasa778

    natasa778 Senior Member

    Messages:
    1,409
    Likes:
    1,208
    London UK
    that would well describe scientists/virologists behind the three negative studies (I do not count psychologists there, who almost def have a big agenda in this issue, ie loss of standing and income even:), PloS Gerwyn described so well, but what about BMJ? For them to publish the Dutch study in the way they did, ie without proper peer review+ they followed the publication with VERY negative weasel comments and an interview that was designed to poo poo WPI without giving them a chance ... in the absence of downright conspiracy being the driving force the only other explanation would be "sheer spite" on the part of BMJ board. And don't forget the neurologist who scorned the Science study in the interview actually sits on the BMJ editorial board, so that was not an accident that her very negative views were aired.
  16. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Once results are in, there will be no hiding place for the BMJ or those like Wessley. If this is the cause, or the cause for some, or even just something we are more susceptible to, they will look like fools.
  17. citybug

    citybug Senior Member

    Messages:
    522
    Likes:
    36
    NY
    Maybe Dr. Mikovits will be going over the sample info we've already read, since study was unblinded, but will be good to see anything published. http://www.wpinstitute.org/research/research_biobank.html

    It must be expensive to do the culturing and also to retest blood over time. Where would these small groups of scientists get the money to do more than a quick try? Also WPI has the blood. Most of my local cfs support group don't want to believe in a new virus at all. I guess that's why I don't want to build up the small negative studies.
  18. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    Rich, I don't know if you were referring to me, but I have been saying for a long time that the whole CFS wrong conclusions has to do more with:

    sexism, arrogance, bias. It is not a malicious conspiracy to keep sick people from getting well. Hillary brought out a good point in the news piece that was posted her not long ago that is from 1996. She said that once the CDC took the position that there was no Incline Village outbreak and the people there had hysteria and doctors overreacted, they could not back track.

    The mind has this way of denying what it can not handle. And accepting responsibility for such suffering is just too much to bear. So denial on the basis of any evidence that you were right in the first place, despite the mountain evidence that you were wrong. Ego, denial, sexism, bias, etc. It is the sad CFS story. But, other illnesses have been down a similar road. We will get to the end maybe sooner than later.

    No matter what Mikovitz says, I think it will be good. She has continually defended and explained and showed corroborating evidence. I see no reason why this will be any different.

    I look forward to seeing what some may have claimed against the study and her response. Hey, if they aren't talking to each other, at least they are talking.

    And I think maybe the suspicious scientist might end up looking at her words and saying, "Oh, I see." Despite the problems with some of the scientists, their curiosity sometimes takes over, not to mention their drive to get credit.

    As has been said before. This became nasty within three months of the Science article with Mikovitz and McClure giving each other jibes in the lay press.

    Someone's career will end over this. And it is all so exciting. Although, it has been much slower in the last three weeks.

    I am looking forward to the April surprise. Hey, maybe it will be even better than the October surprise.

    tina
  19. Gerwyn

    Gerwyn Guest

    yes that is the key issue many heads are on the block over this one.Many stand to lose everything,money reputation academic "lives" and perhaps most importantly to some be the subject of redicule .
  20. Mithriel

    Mithriel Senior Member

    Messages:
    564
    Likes:
    40
    Scotland
    I except the Kerr study from what I am about to say.

    The other two studies were rushed out because the PACE study which has cost over 5milion pounds is due out soon. They are also in a rush to rubbish XMRV because they want CFS to be classed as a somatisation disorder in the new DSM

    The PACE study - which will show that CBT and GET is the best treatment, we have known it would from before it started because of how it was set up )read Malcolm Hooper's "Magical Medicine") will be used to justify all the policy in the NHS and the stranglehold of the biopsychosocial school. This is a world view not directly aimed at ME/CFS but using ME/CFS to show its efficacy.

    When they get their way about the DSM they will be able to say things like MS have a disease component but also a psychological component. Only the physical part will be taken into account so benefits for MS, which costs the insurance companies a fortune in salary protection payouts as they live disabled for years, which be able to be slashed.

    This goes beyond anything about ME/CFS and is deeply political.

    When other, proper studies come along they will simply say that such people have been misdiagnosed with CFS and it will not make any impact on their policies.

    They have been using "medically unexplained" to justify somatisation. When the paper about XMRV came out with such a high number having the virus people began asking if other things now "medically unexplained" might turn out to have an unknown cause. They have successfully diverted attention away from this.

    Those from the US may not realise how deeply involved the BMJ is with the weasely viewpoint. It is deeply partisan and is a mouthpiece for them.

    Mithriel

See more popular forum discussions.

Share This Page