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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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The Race to Retract Lombardi 2009...

Discussion in 'XMRV Research and Replication Studies' started by jace, Oct 10, 2011.

  1. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    But according to some folks, "conspiracies do not occur"
    Well, shows what little they bloody know! :p

    Very careful manipulation of scientists as WELL as the public went on during the Cold War regarding biological weapons, for example.
    Scientists were used to push the line that "bioweapons aren't that great a threat" to the Public keep discontent on such issues down, as others were and also more nasty ways at times to keep anti-nuclear dissent down.
    Often the researchers were honest, merely given false data by the "spooks", others let nationalism/politics or just greed influence their actions
    Both sides of the Cold War had too much to lose, so both sides kept "schtum" about it all.
    Point being that cover ups, conspiracies and manipulation can and do occur. Most though are just "Pushing agendas of interest", not Secret Squirrel (tm) Cabals, lol! :p
    Insurance, possible viral contamination of vaccines, governments plwdged to compensate any vaccine damage cases...huge loads of conflicts of interests, money, power involved. Anyone who thinks they wouldn't try to bury this issue needs to go back to kindergarten! Way too often and for too long has this illness, and GWS, being screwed royally and from on HIGH, that means big power and money are involved.

    Doesn't mean I think all the researchers are "in on the Uber Conspiracy of the Century!", no, not how such works, but media manipulation, pulling strings on funding, bakcing those who are enemies of the issue that causes the trouble, etc etc oh yeah, that's what cna go on.
    hence you get slimey things liek the "Science Media Centre", fudned by big business to push their agendas by "slanting" things and hammering meda outlets with lots of money and noise and "guys in white coats".

    bribes of better job offers or subtle threats on funding grants, nod and a wink passed at exclusive clubs, concerns raised about effects on stock markets and the "good name of science" etc...oh how easy it is to manipulate the world!

    And this is a very "cutting edge" field, with a hell of a lot unknowns and no room for complacency and absolutley NONE for folk to be bloody cocksure, jeesh :/

    This is still very early days. Like it or not, lie back and watch how it all runs the course.
    Two words that should make folk think and pull their horns in on all such debates on contentious science, though I doubt it:
    CONTINENTAL DRIFT
    currer likes this.
  2. Bob

    Bob

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    It's nice to be reminded sometimes why I am still so interested in retroviruses, thank you currer.

    Another thing that you've just reminded me of, is that Dr Singh has also found a retrovirus in breast cancers.
    I haven't heard anything about that research though, other than the fact that she filed a patent relating to it.
    currer likes this.
  3. Bob

    Bob

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    If you view them as rhetorical questions which were intended to stimulate thought, rather than demands, then they might seem more reasonable to you.
    Esther, please believe me that I have been willing to 'listen' to Lee. He has a very clear negative message.
    However, I'm not sure that the 'listening' has been reciprocated, so I hope that currer's questions might stimulate a bit of deeper thinking.
    Wonko and currer like this.
  4. markmc20001

    markmc20001 Guest

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    Firestorm. If you are convinced "HGRVs do not exist", why bother coming here trying to convince everybody else why HGRV's absolutely don't exist? Doesn't make sense to me.

    Seems like you have come out of nowhere in the last couple weeks and have been posting non-stop about why HGRV's don't exist. Seems like a waste of time if one is sure the whole HGRV deal is over, and had better ways to spend his/her time before the negative BWG results.
    currer likes this.
  5. markmc20001

    markmc20001 Guest

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    Heya sir. I agree conspiracies do occur by definition, but unfortunately have a negative connotation since the term has been mis-used pejoratively so much.

    I think there might be a better way to approach the subject though.

    For instance: Dr Kenneth Friedman has a really great video discussing the "elephant in the room" as he refers to it. The elephant being he has been prevented and punished for trying to eduacate college students about ME/CFS. To me that sounds like two or more people are working together to deprive ME/CFS patients of their rights to well trained doctors and the most current treatments. A clear definition of conspiracy.

    However, it really comes down to "what is the truth"? I think that covers it.

    Friedman video.
    http://www.youtube.com/watch?v=KhB-701-BMU

    Is Dr Burzynski telling the Truth in his Burzynski movie or not? If he is not, no conspiracy. I happen to believe The Bursynski movie clearly documents the facts. The truth is, the FDA and state of Texas are not acting in cancer patients best interest by continually suing Dr Burzynski AND by maintaining a $300 million dollar application fee for clinical trails. $300 million means ONLY the biggest of big pharma can afford it(that's alot of dang money if you can't print it). The result is Dr Buzynski is prevented from using his life saving cancer treatment on patients.

    Would it be truthful to suggest, is Simon Wessley and the government is trying to help ME/CFS patient community with his publications over the years? Think the answer is clearly no. They are working together to prevent people's ability to access medical care and disability benefits.

    I think patients just want to know the truth....Conspiracy or not. What is the truth? You trying to help patients and further research or not?

    Tell us the truth.
    currer likes this.
  6. currer

    currer Senior Member

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    That was well put Mark.

    What are people's inner motivations?

    Our illness is stigmatised, so anyone who becomes involved in trying to help ME patients is by definition more than usually brave and altruistic, because there is a risk attached to getting involved in ME, much as there is to getting involved in researching autism.

    I am so distressed to see fellow patients unthinkingly joining in a chorus of criticism of the very people who have ventured to help us.

    It is more than a question of whether the science is correct or not. There are ethical and motivational issues here too.

    As a member of a group which has been eagerly and unthinkingly condemned by many powerful voices, I wonder about those voices here which eagerly jump to criticise researchers who have tried to help us.
  7. barbc56

    barbc56 Senior Member

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  8. markmc20001

    markmc20001 Guest

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  9. SilverbladeTE

    SilverbladeTE Senior Member

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    Aye! :)

    I love history as well as science, form the assassination of Ceasar, to the UK's deliberate actions to provoke the Zulu and then Boer Wars, you can see hwo things actually run.
    I'm sure everyone of us has seen in say their local politics, corruption, gerrymandering, "fixing" of contracts etc being uncovered.
    Currently, pharmaceutical science is comparitively riddled with corruption and fraud.
    And so on and so forth.

    On the more extreme end, many folk don't take time to actually examine the facts of the more outre' conspiracies.
    For example, JFK's assassination seems to just have been Oswald's madness based on current evidence (Oliver Stone's film was great as *fiction*, lot of stuff was altered to make it more "sexy" on screen") What is though veyr shady,was Bobby's killing...but most folk fixate on JFK and thus the the crime more likely to have been an actual conspiracy is ignored in the bruhaha and hence, the accused has little chance of proper appeal or the truth to emerge.

    Kind of same with Lockerbie (like it or not, the actual evidence supports the belief that Iran was behind the atrocity, not Libya..but at the time for many political reasons, that was not what was "wanted", sigh)

    From my work in digital art, I can assure folk that another "Big Conspiracy" theory is in some ways, complete bunkum!
    Photos taken on the Moon and in space do look strange, you can even experiment with it yourself to see this using digital art programs, because in space, there's no atmosphere to diffuse light, so it vastly alters the way things look. We're jsut so used to it when presented with images taken without the effects of an atmosphere, they appear strange.
    And, for example, the reason many pictures taken on the Lunar landings don't show stars is because the Sun is so massively bright, the exposures are so fast they will not register the very faint stars in comparison, exact same reaosn you generally cannot see stars in daylight on Earth, either! (hence note the mirrored visors of the astronauts to prevent glare blindness)

    Alas, people assume "conspiracy" = "always Dan Brown novel, over the top" type of stuff ;)
    Real, heinous, powerful conspiracies do occur, see lot of Cold War ugliness as examples, but vast majority of it is just low-level "dirty deeds" with folk "scratching each other's backs", nepotism, fixing contracts so they profit better, evading tax etc etc.
    The entire world WORKS on bloody conspiracies, not James Bond stuff, merely "Hey Bob, this new congressman's tax ideas could cost us money, he wishes to raise tax, let's fund his opponent, or hire a Private Investigator to dig up dirt on him!"

    ironically, often it's covering up relatively minor stuff that leads to more heinous acts, see Watergate.
  10. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Unfortunately SilverBlade you are right. Its the potential for escalation that leads to the most problems, however what seems to be happening here is a compounding situation. Different purposes having the same outcome, eg if this turns out to be a race for patents, combined with the belief that the disease is not serious, combined with a trigger in vaccines, combined with personal dislike for ME patients or other professionals etc. All of these potential issues are relatively minor, yet if all work in sync the result could mean waiting another 20 years. And it will still take something major along the lines of another RV to break the cycle.
  11. Angela Kennedy

    Angela Kennedy *****

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  12. Firestormm

    Firestormm Guest

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    Marc,

    It is not my opinion that they don't exist. How the hell should I know? I am a patient not a scientist. Here was the source for my 'claim':

    '10. All the SRWG labs optimized their assays to VP62. VP62 does not exist in nature and Lombardi et al. is now known to have discovered HGRVs. Does your study include HGRVs? Or how do HGRVs relate to XMRV?

    Response: As demonstrated in an earlier slide, although this study was initiated after Lombardi et al. as a study of XMRV, as soon as Lo et al. was published the mission of the study was broadened to include all MLV-like viruses. Thus, almost all of the assays were designed to perform against MLVs in general and were optimized and tested as such. As our study has demonstrated there is no such thing as an independently validated clinically positive sample against which to test. Currently there is no such thing as human gammaretroviruses (HGRV). No published virus has been isolated, cloned or sequenced from a human.'

    Graham Simmons, PhD

    http://www.research1st.com/2011/10/14/xmrv-updates/

    It is not something that I am trying/or need to convince others does not exist Mark. The claims of an association made in Lombardi et al between 'XMRV' and 'CFS' did not hold up to scrutiny. Even the WPI/Mikovits and Ruscetti not to mention Lombardi could not substantiate those claims when they took part in the BWG study, that began within months of that paper being published.

    Prior to the publication of those results people began repositioning themselves about 'XMRV' claiming that it wasn't 'XMRV' at all really, but was an as yet unidentified 'HGRV'. Well now 'XMRV' is dead - let's see what Mikovits and anyone else for that matter is able to come up with next. Until then it is a THEORY Mark.
  13. Ecoclimber

    Ecoclimber Senior Member

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    Coffin reviewed the paper, but a reviewer can't tell if an author is providing incorrect or faked data. Reviewers count on the integrity of authors. The way that lies are often detected is when other scientists can't repeat the published experiments. In the case of Fig. 2C, Mikovits has provided the evidence that the data are questionable by providing the data in Fig 2C with different labels in one of her talks. ERV's analysis documents the fake.

    > The overall story of XMRV is that Urisman et al. cloned what they thought were viruses from prostate cancer patients (VP35, VP42, and VP62). The names for these viruses are the patient identifiers, and the viruses were cloned into a standard bacterial plasmid. Turns out all of these clones are closely related and were all derived from viruses present in the 22Rv1 cell line. Urisman et al. named these closely related viruses XMRV. Mikovits received one of these clones (VP62) from Bob Silverman before she began her studies, for use as a standard that she could use to calibrate her assays for XMRV in CFS subjects. Unfortunately, she contaminated her human samples with this plasmid, and when the samples were analyzed, sure enough they found a virus almost identical to the XMRV virus VP62 in the CFS patient samples! Because DNA sequencing is error prone, there are a small number of differences between the XMRV viruses she found and the XMRV virus in the VP62 plasmid. Now she claims that she has found additional "HGRV" viruses in CFS patients, but these are almost certainly the result of contaminating mouse viruses, as were found in Lo et al.

    Eco
    Firestormm likes this.
  14. Firestormm

    Firestormm Guest

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    Have you got a link for that please Ecoclimber?
  15. Esther12

    Esther12 Senior Member

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    I'm afraid that I've not been following all of the XMRV threads recently (too many!) - So I'm not really able to judge what's happening in this case, and tried to make more general points which may be related. To me, it did look as if answers were expected, and I think we'd all struggle to answer most of those questions with any clarity.
  16. currer

    currer Senior Member

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    This account of how the VP62 contamination took place is accurate and not disputed by the original authors of the Lombardi paper, who also signed the partial retraction.

    But remember this is a PARTIAL RETRACTION.

    Why on earth try to accuse someone of fraud? Eco, this weakens your case. What is the source of this extreme bias against Dr Mikovits?

    There are also differing accounts of who was responsible for the contamination, and this needs to be acknowledged.

    The serology evidence is still good and as far as I am concerned the retroviral hypothesis in ME is still a powerful one and worth researching

    Dr Mikovits has beenn saying since the Lo and Alter paper that she can find evidence of a family of HGRVs in her patient samples, not only by PCR but confirmed by antibody evidence, and by a distinct inflammatory signature from the immune response.

    Other medical approaches to ME and the illnesses associated with it, such as lymphoma and cancer also have the potential to be understood by including retroviral causation as an element in the disease.

    I do not know whether people here are aware of how limited medical knowledge still is. Many diseases can be treated (with differing degrees of success,) but the CAUSE of most disease is NOT KNOWN.

    Medical treatments are generally focused on reversing pathology or ameliorating symptoms, in the absence of a complete understanding of cause.
    Advances in understanding the genetic basis of disease, how some genes predispose to cancer, mean that research focusing on viruses, which can insert into the genome and alter genetic expression, leading in some cases to cancer, research on viruses and genes will certainly be the way forward in medicine.
    This enlargement of our previous knowledge may lead to some uncomfortable conclusions as associations can be made which previously we would have been incapable of making.

    The retroviral hypothesis is extremely exciting and a fruitful line of enquiry, a totally new paradigm for disease aetiology, one which could lead to new and much more effective treatments for cancers and other inflammatory conditions. Remember people are dying of some of these cancers, for example,the lymphoma that Dr Snyderman has is resistant to conventional treatment.

    Would you want to deny these people a potential avenue of research that could lead to more effective treatments?

    Why the outcry against such a revolutionary idea? And against the data that could justify further research?

    I suppose genuine revolutions are always decried initially, but to me this is a tragic waste of opportunity and failure of imagination.

    I have always argued against premature closure of this line of enquiry, and many here, like me feel suspicious of the motives for shutting down, yet again, promising lines of work that lead...to retroviuses.
    Bob likes this.
  17. markmc20001

    markmc20001 Guest

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    My point exactly, it's a flawed study design. Everybody optimized their assays to VP62, without ever replicating the Lombardi Studies.

    I think you mean hypothesis.
  18. Esther12

    Esther12 Senior Member

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    What about their answer?

  19. Firestormm

    Firestormm Guest

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    Hi Currer,

    IF Mikovits believes she has found something other than 'XMRV' then do you not agree - along with all the other problems raised recently regarding contamination etc. - that Lombardi et al (which was hypothesising an 'association' between XMRV and CFS in blood) should be retracted?

    Surely, if what she believes she found is not XMRV then she needs to produce another paper explaining what she found and how she found it and whether there is still an 'association' with 'CFS'.

    Is not Lombardi et al. invalidated simply because there has been no 'XMRV' found in patient blood? That nobody was able to find 'XMRV' in patient blood or anything else extracted from patient blood?

    I mean where do you stand on the whole basis of the Lombardi et al paper now we know about Silverman - even if you don't buy the thought that WPI did indeed contaminate their own samples?

    The BWG took almost 2 years to produce those results. Do they not count for anything? Why do you think only 15 positive samples could be produced and then nothing found?

    I don't get it. Really. If 'XMRV' was not found and is incapable of being found even by the same scientists who claim they could find it - then Lombardi et al (after considering everything else that has happened) can no longer stand, can it?
  20. currer

    currer Senior Member

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    Hi Firestormm,

    You must know as well as I do that Judy Mikovits was unable to get any further retoviral papers published following the original Lombardi paper.

    So this takes us back to editorial bias interfering with scientific debate, because although she repeatedly said she could find a family of retroviruses in her patients, she was not permitted to do so formally through publication, which made it easier to dismiss her findings.

    What is wrong with preliminary findings being modified in the light of further research? And why should these findings be discredited because her research is stopped from developing its understanding of her initial findings and sharing them with other interested researchers?

    In a new discovery our understanding of what we find will inevitably be enlarged by further research.

    THIS IS HOW SCIENCE WORKS.

    Why cannot it be allowed to work in the usual way in this discovery?

    This is why so many on this forum with a scientific background are angry and feel Judy Mikovits is being singled out and unjustly treated.

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