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 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in 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....
Discuss the article on the Forums.

Chicago Tribune: Manipulation alleged in paper linking virus

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by LJS, Oct 3, 2011.

  1. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    432
    Raleigh, NC
    You would preclude Dr. Montoya (viruses), Dr Lerner (viruses), Dr Lipkin (viruses), Dr. Huber (endogenous retroviruses), Dr. Klimas and Dr. Fletcher (Natural killer cell dysfunction, the Lights (dorsal ganglia root infection), Dr. Peterson (NK cell and cytotoxic T-cell dysfunction), Dr. Mella (rituximab treatment), Dr. Peterson (again) (CMX effectiveness), miRNA changes (Brenu/Staines), Dr. Chia (enteroviruses)......from that list? I think they all believe they are doing serious research on the causes of ME/CFS.

    Whether or not she is an official public relations 'officer' is meaningless. Every time she opened her mouth she was representing the WPI as was Dr. Deckoff when she was with them and as does Annette Whittemore now.

    The standard is does she leave the WPI in an empowered position or not? Do you think the WPI is an empowered position right now? I think they were in that a position a couple of years ago...I don't think they are any more.
    jenbooks and LJS like this.
  2. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    263
    Long Beach, CA
    I might agree with you, except that the attacks started before there was a reason to think that it was poor science. You know that when the paper was published, it looked good. It was peer-reviewed and published in an esteemed journal, and it was co-authored by researchers from top-tier institutions. There had already been papers published associating XMRV with prostate cancer, and they hadn't raised a big flap. No, what made the Science paper controversial was the association with ME/CFS, and that was only controversial because it refuted the psychosomatic theories and threatened the blood supply. So, yes, I guess I'm embracing the scenario that those critics who started trying to discredit the paper before good studies were done to refute are trying to discredit ME/CFS patients. My opinion has nothing to do with liking or disliking Judy Mikovits; I've been in the "let's wait and see what the science tells us" camp all along. I've never thought we should believe anything about XMRV just because Judy Mikovits said it (or because John Coffin said it). And I'm still in that camp about the latest brou-ha-ha. I'm waiting to see what the journal Science says.

    I think that most of what's printed in the popular press about ME/CFS is based on ignorance or on the misinformation available from the CDC. But I think there are a few writers who would like to discredit ME/CFS patients, and I think that Trine Tsouderos is one of them. I think that suggesting that she is trying to be impartial does us a disservice.
    OverTheHills likes this.
  3. floydguy

    floydguy Senior Member

    Messages:
    650
    Likes:
    238
    Yes, but some of those things are long in the tooth like HHV-6. If they are so important and need funding perhaps they need a loud mouthed researcher that upsets the apple cart...oh wait a second we can't have that now can we?

    Others are "effects". I am a patient of Klimas and respect her and her work but why is the NK activity dysfunctional - perhaps a nice biomarker but it's not clear if something has caused it like a continuous infection or whether it's a postviral issue. The same can be said of some of the others. I do want to see more on the dorsal root ganglia and some of the other topics.
  4. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    770

    Hi Cort.

    The fascinating point about Dr Mikovits HGRV research is precisely that it unifies many of the diverse findings of the researchers you mention.

    That is why I differentiated between causes and symptoms in my previous post.

    NK cell dysfunction, dorsal root ganglia inflammation, different viral infections, the response to rituximab,.....these are all effects (symptoms, if you like,) that could result from an underlying retroviral infection.

    Retroviruses have now been linked to ME on three separate occasions. It is time they were investigated properly. That process has not even begun yet.

    The retroviral hypothesis also provides a reason for the excess of certain cancers in recent decades, an increase in prevalence for which doctors have no explanation.

    I have no doubt that ME as we know it is a new disease. We need an explanation as to why it has appeared and is becoming so common. Regular viral infections are unlikely to explain this new phenomenon.


    With regard to your other point, I think it is a reflection on Dr Mikovits stature as a researcher that her statements were accorded so much interest, but I do not think she can be held responsible for the lack of a proper public relations department at the WPI.

    (Nor would I criticise the WPI for this. We need to remember they were a very new and untried organisation and they have had a rough time.)
  5. Andrew

    Andrew Senior Member

    Messages:
    1,952
    Likes:
    1,206
    Los Angeles, USA
    Good point. WebMD runs an article that points the the PACE study and describes is as studying CFS as it is defined in the US. The Oxford Criteria is a different syndrome with only a few overlapping features. So why don't journalists ever mention this. It's not because the PACE trial is small in comparison. This treating of different syndrome definitions as if they are interchangeable has been promoted by our own CDC for years. And promoted by many scientists. Why isn't that big news? It's not as if it's a secret.
    ahimsa, OverTheHills and ixchelkali like this.
  6. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    263
    Long Beach, CA
    I think you're right about that.

    But the PACE trial got lots and lots of press coverage, along the lines of "Study shows exercise cures CFS," so it was considered newsworthy. It just wasn't scrutinized to see if the press releases were supported by the study. If the media were really interested in a story, the fact that the British government had spent umpty million pounds on a study that showed...virtually nothing...should have been the headline. That's the kind of thing that makes me think that there's an agenda or that the media just regurgitate science press releases without scrutiny, or a bit of both.

    There's no problem getting a story that supports the psych viewpoint published. It's the medical theories that are automatically considered controversial or, more often, ignored.
    ahimsa and OverTheHills like this.
  7. Wildcat

    Wildcat Senior Member

    Messages:
    636
    Likes:
    574
    .

    ixchelkali wrote: I think that most of what's printed in the popular press about ME/CFS is based on ignorance or on the misinformation available from the CDC. But I think there are a few writers who would like to discredit ME/CFS patients, and I think that Trine Tsouderos is one of them. I think that suggesting that she is trying to be impartial does us a disservice.

    .
    .


    Well said ixchelkali!!!!! I agree with very many of your well considered points!
    .


    Sorry, but am too wiped to be articulate tonight, but I am shocked to the core by what is going on this forum right now in terms of siding with a very dodgy journalist (Tsouderos) and the young lass ERV - who has been getting away with behaving like an eight year old playground bully for a very long time, and who has brought science into disrepute by her out of control and childish behavior. I must say I will never view scientists the same way again after reading ERVs offensive and spiteful juvenile rants. Its the science world that has lost out by giving the young minx ERV credibility.
    .
    Roy S, OverTheHills and ixchelkali like this.
  8. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    263
    Long Beach, CA
    On the whole I agree with you, SOC. But if we're going to put the blame where it belongs, the patient community --or rather, parts of it-- need to accept some of the blame, too, for casting aspersions on the integrity of any scientist whose study didn't support the 2009 Science paper. For suggesting that if they didn't find XMRV in ME/CFS patients, not only was their study flawed, poorly designed, or sloppy, but that they were part of a conspiracy against patients. Or that they had been "got at" or bought. That for whatever reason, they didn't want to find XMRV. They were, in short, vilified. Many people in the patient community have divided researchers into good guys and bad guys, based on whether or not they found XMRV. That hasn't served us well, nor endeared us to the scientists who were trying in good faith to arrive at the truth. Granted, some of the negative studies were flawed or sloppy or even undertaken in bad faith, but it would have been better if we patients tried to judge the studies on their merit, not on their outcome, or as if the researchers were wearing white hats or black hats.
    meadowlark and LJS like this.
  9. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    152
    Essex, UK
    SOC, who do you think are the 'ME' branch of the pseudo-skeptics?

    And are you saying the science world will not give ERV credibility in this issue?
    Wildcat likes this.
  10. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    152
    Essex, UK
    I have to disagree. This community has become highly knowledgeable, and all people wanted was good science. When that didn't happen they critiqued it. That's not unreasonable.
    Wildcat likes this.
  11. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    152
    Essex, UK
    This is a very vague generalisation and categorisation of ME community members as 'baddies' SOC, especially as you do not make clear what you mean. You could, for all we know, be bad-mouthing anyone who ever has made a legitimate objection to any manifestation of poor science, because you have not clarified what you mean.
    Wildcat likes this.
  12. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,311
    Likes:
    1,715
    London
    I think it is wrong to blame the patients.

    Could this thread agree on who exactly of the non WPI researchers did a great job in their study design, isn't blighted by the VP62 contamination problem, gave equal weight to CFS and Prostate cancer when they had negative results and was fair in interviews and the media with no spin?

    How many nominations will we have that everyone here is unanimous on?
  13. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,076
    Likes:
    1,580
    Somewhere near Glasgow, Scotland
    Esther
    my point on cancer, is that almost everyone has their heads right up their asses ignoring the huge elephant in the room: WTH are cancer rates soaring?
    Not even accounting for aging population, better diagnostics, smoking and known environmental risks like asbestos, can the numbers be accounted for (and that has been shown by hard fact, not too long ago).
    When folk, be they researchers or J. Q. public, raise the subject...the silence is deafening. Why?


    Give an odd example I've raised before:
    Frankly, no one (comparitively) gives a rat's ass that 40,000 Americans, 3,000 British folk..a million world wide, each year are torn to pieces or burned to death on the roads.
    And for everyone one killed there's a hell of a lot more left disabled, unable to work suffering,for life.
    Terrorists,spree killers, drug addicts etc don't even come close to that death toll, but get huge attention...why?
    Partially because folk are dumb enough to see this is "acceptable" losses, but largely because it threatens a vast financial/political web of interests so the road deaths are deliberately "glossed over"

    There was a huge conspiracy betwen the auto manufacturers (and others) to not push for more safety features because that would up costs...that really happened with certian firms up to early 70s.
    People who protested, investigated etc suchs areas routinely got screwed over, blackballed, spied on by private investigators, etc.
    See how the tobacco companies worked.

    Big Business, government and the whole rotten interconnected shebang, have learned from past expose's, and work to stymy things that cause trouble.
    It's not about whether the "trouble" is true or not, merely that it causes change and upset to vast profit and power, and they won't allow such.
    Alas, the medical area is deeply involved in this crap due to the pharma corps, and doesn't have to be fraud or corruption, often merely the way things get "pushed", who gets funding, and who doesn't etc.

    They also use pundits and "anonymous sources" (today they cna use the net, such as by pundits as of old, or paying someone saps in a developing nation to spam emails to alter public opinion, or give weighted info to otherwise honest people who then disseminate it not realizing they've been used)

    have folk never read up on "black propaganda", and how such has been run all the way back in history? See the War of 1812 and the "yellow press" and how things were manipulated even back then, or heck, all the way back to how Ceasar and his ilk played their public!

    Mikovits, and others upset apple carts and so had to be shut up, and best way to do such is to make folk think they are con artists, because folk never forgive being lied to or used and despise such more than damn near anything else, hence when folk feel a person will con them, they will distrust 'em, even if later evidence vindicates them, the mud sticks.

    If Jesus Christ was alive today, the Elite would have him painted as Al-Qeda's top baby killing psycho before the week is out, and "droned" or renditioned the week after! :p
    It's the lesson of history, tech may change, but folk largely are still the damn same. What they cannot control or own, they will destory, subvert, corrupt or sabotage

    "If you want to make enemies, try to change something"
    Not about whether they are right or wrong, merely the threat of change to vast power and profits.

    There's no "New World Order" merely many powerful people, in many disparate groups, with agendas, and if say, one lowly pleb upsets their apple cart, suggestions are raised, lackeys informed, bribes tendered, fat pensions, hiring to new spot, or old favours brought up etc
    It's not the "Iron fist in the velvet glove", no, just the "very big sponge in a flabby hand" ;)



    Did you watch the video of the CROI conferefence, hm?
    Did you note how Stoye and others treated the subject and how many folk were excluded from invitation?
    That is NOT the way "Science" is supposed to behave :/
  14. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    263
    Long Beach, CA
    I agree that this community is much more knowledgeable than the general public and better able to evaluate scientific studies than most scientists would expect. I know I've had a crash course in virology, especially retrovirology. I already knew how to read a scientific paper, but I've branched out into new areas of science.

    I also agree that critiquing the studies is not unreasonable. I'd go further and say that it's highly desireable. Debating whether the paper supports the conclusion is useful, too. All good.

    But I disagree that it stopped there. I read a lot of character assasination of any scientist whose paper didn't support the Lombardi/Mikovits paper, and I believe that was uncalled for, largely unfounded, and in some cases, absurd (suggesting that Daniel Peterson had gone over to the dark side or that Ilia Singh had been "got at" or that Vincent Racaniello doesn't know what he's talking about, etc). That sort of thing doesn't serve the patient community well, and does our reputation no good, especially when it happens outside of the patient forums. That's what I'm saying is where (some) patients need to accept a portion of the blame for scientists' poor opinion of us.
  15. Esther12

    Esther12 Senior Member

    Messages:
    5,150
    Likes:
    5,050
    Yeah.. I think it was a really small minority though. Looking back, I wish I'd done more to speak up against it. I think that some of those taking this approach presented themselves as better informed than they were, and even though I thought that they were talking rubbish, I didn't really want to have to spend my time trawling through wikipedia's retrovirology articles in order to engage in debating them.

    Lots of people spoke up on behalf of Singh, Peterson and Racaniello. I know I have. I got the impression that most people on this forum thought positively towards all three. Everyone gets some criticism - almost everyone deserves some criticism, so while I think some researchers were treated unfairly, I don't think it was as bad as you imply. Maybe I'm too thick skinned, and tolerant of attacks on others - or maybe I've just not noticed the worst threads/posts here. I have seen worse stuff on other sites around the internet, but tend to assume (perhaps unreasonably) that's just the same few people, posting the same poor arguments, based on the same misunderstandings.
    Sam Carter likes this.
  16. floydguy

    floydguy Senior Member

    Messages:
    650
    Likes:
    238
    I hear what you're saying but these are open forums and anybody can join. We don't even know the names and addresses of 95%+ of the people posting. The whole reason the other forum got started was so anybody could say what they wanted with no restraint. It's been stated several times shame on journalists or scientists who judge a population based on internet comments. Perhaps the whole research community should be judged on what I just read in the Economist:

    http://www.economist.com/node/21528593

    Tsk, tsk. They're all corrupt and should go to jail :eek:
  17. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    263
    Long Beach, CA
    Not fair, UKXMRV! Whan has everyone here ever been unanimous on ANYTHING? :D

    I do think there were at least a couple of well designed studies. I don't quite understand about giving equal weight to CFS and prostate cancer, since they (at least, the ones I think we're talking about) were ME/CFS studies, not prostate cancer studies. But if I were to cite my nomination for a study that meets your criteria, I'm guessing you'd disagree.

    I'd like to be clear that I'm not blaming the patients for our reputation. We have been depicted as crazies in the media; at scientific conferences by the likes of Stephen Straus, Reeves, Wessely, White, et al; in manipulated, pseudoscientific papers; and by innuendo on government websites. That is none of our doing and is undeserved.

    All I'm saying is that some people in the research community may have been given a poor opinion of ME/CFS patients in general because some patients engaged in unfair character assasination against researchers whose findings differed from the WPI's, and that we need to accept that portion of blame which lies with us. We don't further our cause by being disrespectful to researchers who are making an honest effort to help us, just because we don't like their results. And I think the same thing is true of castigating Dr Mikovats if it turns out she was wrong; she may have made mistakes, but I believe she has made an honest effort to help us and that we should be appreciative of that. Sometimes very promising leads turn out to be dead ends; that doesn't mean that we don't want scientists to follow those leads. Bad-mouthing Judy Mikovits now is really no better than casting aspersions on Daniel Peterson or John Coffin or Ilia Singh was a few month ago.
    SOC likes this.
  18. citybug

    citybug Senior Member

    Messages:
    522
    Likes:
    36
    NY
    Please see further detail of what happened in article just published. http://www.forums.phoenixrising.me/...-western-blots&p=209970&viewfull=1#post209970

    Mikovits was the most senior researcher at WPI. I think they should have listened to her. They have been having internal conflicts. WPI was trying to be many things.

    People on the other forum are rude. I often don't like it, but they have been on the right side of the science consistently. Maybe we need the rabble rousers. They keep at it and get the attention of scientists. Maybe this is our Act Up. We are a whole spectrum of all types of people spread over the world. Due to this illness many are very angry and very ill. Sometimes it is appropriate to act that way.
  19. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    770
    I like the other forum.

    And they are right about the science.
  20. floydguy

    floydguy Senior Member

    Messages:
    650
    Likes:
    238
    Yes, to some extent I agree. But Peterson is a little different from the others. He has been treating and committed to ME for decades. Coffin and Singh I thought made some ridiculous conclusions such as this is the end of XMRV, not necessary to study this anymore and by the way boys and girls don't take any anti-retrovirals. I would have been okay with the negative studies but then this crowd has to go on and make ridiculous statements that in my opinion are completely unjustified. Peterson deserves more slack because presumably he does have an interest in solving the mystery.

See more popular forum discussions.

Share This Page