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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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Why does 5AZA matter?

Discussion in 'XMRV Research and Replication Studies' started by Lee, Oct 6, 2011.

  1. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Not sure how you get from the first statement to the second statement. Most of what you are saying is very vague and is noteable by many omissions. If we are to educate specialists, then I suggest a few pertinant facts should not be omitted.

    If we exclude the VP62 plasmid, then there is no evidence whatsoever that a well designed PCR could not find HGRVs. If the negative studies focussed on VP62, then they should be negated themselves. In the BWG it appears that the WPI and VIPdx did not used their regular assays, supposedly because of the constraints of the BWG. So their assays have not really been challenged. The WPI lab assays in particular have not been challenged.

    Furthermore by only mentioning PCR, you neglect to mention that other methods, eg culture and serology, have not been challenged. Again WPI and VIPdx by necessity culture the virus, as they acknowledge it is difficult to find in the blood. All you are really saying is that so far the negative studies and the BWG have supported what WPI has been saying all along: the virus is hard to find in the blood and you need good assays.

    There is no proof yet that the virus is transmitted by blood; there are plenty of other vectors: placental transmission, vaccination, tissue transplantation, semen etc have not been ruled out. As for blood transmission, there is evidence that indicates that HGRVs are present in the blood during amplification stages only, and retreat to tissue reservoirs, during non-amplification periods, so they may only be transmissable by blood during the amplification period.

    Finallly, very strong models for a single retrovirus to cause different pathologies already exist. There is also new evidence that newly identified HIV strains, as yet unidentified by PCR, can have unique pathologies, thus providing an explanation for different subsets of ME. This behavior is also well characterised in MLV studies. In fact what the latest HIV study has found is that multiple pathologies, caused by multiple strains, can co-exist in a patient.
     
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  2. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Having some experience with MLM design and development, I can assure you that Kurt's statement may not be entirely valid. Mikovits may be assigned executive saleperson membership, but that doesn't mean she has even seen the product. Many MLMs stack their tiers and assign sales to dead memberships, to boost profits, or to optimise operational efficiencies etc. His statement can be interpreted as a slur and a strong indicator of his intent: it undervalues and trivializes the work Mikovits has done for ME/CFS and will continue to do.

    Speaking plainly, it is difficult to understand why many members go out of their way to sink the boot into WPI and Mikovits, particularly when WPI's efforts have raised the profile of ME/CFS beyond what anyone else has been able to do in decades. Irrespective of whether WPI and Mikovits marketed themselves badly, or were sloppy, they did more for us than any other agency, political and research, by a country mile. And if sloppiness and bad marketing is what it takes to lift up this community, then bring it on. It is both transparent and petty when forum members fail to acknowledge this, or do so backhandedly, and regularly post on these threads just to denigrate researchers and spread negativity about promising research.
     
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  3. jace

    jace Off the fence

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    RRM has pm'd me, and he sent me a link that I have investigated.

    Regarding the "Vitamin Salesman" tag, the company Pharmanex, under its parent company Nuskin, offers a discount on their products if you sign up on their site. They hope, and their business model is, that you then go on to sell their products to your friends and neighbours. It appears that Judy, or someone saying they are Judy, did sign up, and is at the lowest rank of their incentive scheme. Of course, anyone could sign up anyone else on that site. Judy may have bought some face cream from these guys in the past. Or maybe someone else entirely signed her up without her knowledge. There is no requirement to provide ID on the online membership form.

    https://www.nuskin.com/content/nuskin/en_US/products/pharmanex.html
    http://www.bigplanetusa.com/library/NSE/pdf/celebrate_1005_accolades.pdf

    JM, as a member (and rear commodore, respect ;)) of a yacht club did take her turn, as required by her position, to man the bar. It was an unpaid, purely social position.

    Hey, Judy's a sailor like me :D
     
  4. willow

    willow Senior Member

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    Thanks for that info, Jace.

    It's perplexing and saddening that the same people who were generous with dubiously motivated Phil Parker/Lightening Process types and their unsubstantiated 'therapies', treat Judy Mikovits with harsh disadain, sneers and smears. It's not remotely even handed.
     
  5. Bob

    Bob

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    Judy has a long background in cancer research at the NCI.
    And she has also held other senior scientific positions in related industries.

    This is a section from her biography:
    "Dr. Mikovits spent more than 20 years at the National Cancer Institute in Frederick MD where she investigated mechanisms by which retroviruses dysregulate the delicate balance of cytokines in the immune response."

    See the rest of her biography here:
    http://www.investinme.org/JudyMikovits.htm

    She has been involved in private industry, in a scientific and research director capacity, but I don't see anything about her selling vitamins.
     
  6. leela

    leela Slow But Hopeful

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    Much of this is starting to smell like an orchestrated smear campaign.
    It all has too many of the signs and patterns of that kind of strategy, which is a well-known one with its own history.

    Fortunately, it seems there are enough people who can recognize the need for Judy's work to continue and will provide her with the opportunity to do so.
     
  7. currer

    currer Senior Member

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    Underhand attempts to devalue or undermine opposing views conflict with expectations of proper scientific behaviour.

    Such techniques include;
    using double standards,
    denigrating a theory or personal denigration of its advocates,
    blocking scientific publications using peer review or editorial discretion,
    exhibiting bias against one side of an argument,
    using formal processes to give a stamp of approval to a dominant view,
    forced withdrawal of research.
     
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  8. alex3619

    alex3619 Senior Member

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    Hi, when someone is attacked in what looks like an orchestrated smear campaign, typically politicians, it only works if nobody checks the facts and thinks for themselves. In cases where they do check the facts, it tends to backfire badly. Plus whoever was saying the negative things loses all credibility. Bye, Alex
     
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  9. Firestormm

    Firestormm Guest

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    Hi Leela,

    I don't believe that what has happened is anything like an orchestrated campaign against any individual - unless you include perhaps the reaction from the WPI and Mikovits sacking (though personally I think they are looking out for themselves when they should be doing their utmost to make amends with their supporters).

    This has been primarily about the science - the Lombardi et al paper itself. I dare say scientists are unhappy with some of the things that have been said and by some of the reactions that have resulted from the (how shall I say) 'tactics' employed such as those that have scared people - but at the end of the day if Lombardi et al is flawed (and there are serious issues with it not least resulting from and pre-Silverman's retraction) it is this paper that science will address.

    What was it Racaniello said recently? Something like 'follow the science and not the scientist'? Well whatever, but I happen to believe this has to be the way to proceed. Nobody will ever prove to everyone's satisfaction that a retrovirus (or anything else for that matter) does not play a part in human disease. All they can do is subject a published paper to review and critique.

    Of course Lombardi et al may survive. Mikovits et al might produce a paper that gets published which does support her latest reasoning. Who knows? I certainly don't. I feel for those who paid for the 'test' and for those left extremely upset and asking Annette if it is safe to breastfeed and for those scared now because Mikovits is claiming all of sudden that this latest version of a retrovirus is airborne.

    And yet now those same patients, the one's enrolled in Mikovits' research at WPI, are being torn between supporting Mikovits or supporting the WPI. And what of that NIH grant money? And the research that was promised? WPI claim it stays with them I believe and Mikovits says it goes with her. What a terrible situation. And on top of everything else too. Nobody seems to be willing to stem the confusion to stop the rumours and speculation.
     
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  10. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    It is definitely a deliberate smear because the substance of the vitamin salesman jibe was known to those who were spreading it around, yet they continued to do so. That these people have shown a ongoing pattern of denigrating Mikovits with shared knowledge implies orchestration. As this one was so laughable it undermines the plausibility of many other claims they made.

    Why is there no move to apologize about the comment, once its lack of veracity has been confirmed, given that it is very misleading? At the very least it implies a lack of professionalism by those involved in spreading it around.
     
  11. leela

    leela Slow But Hopeful

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    I would surmise that it is precisely beacause it is an organised smear campaign that there is no apology/retraction. I notice this is how this kind of campaign works: drop a whole bunch of shit-bombs, repeat them often, let them fester and foment discord, and allow the truth to be subsumed or obfuscated by the whirlwind.

    Have you seen the latest Wakefield talk? He explains in great detail, much like the Burzinski movie, or Under Our Skin, exactly how false information gets generated and disseminated through all kinds of channels with great deliberateness and focus.
     
  12. currer

    currer Senior Member

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    Hi Leela,

    I dont know of a recent interview for Wakefield, I watched the Mercola interview on youtube last year. It changed me. I had no idea that a decent man whose only aim was to investigate his patients disease could be treated with such apparent savagery and barbarism by the political and medical establishmant.

    The campaign against him had been such that I had only heard the negative publicity, which was repeated everywhere without question, and that included scientific journals.

    Leela, have you got links to the interviews you mention?
     
  13. leela

    leela Slow But Hopeful

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    Yes, currer, here is the excellent video of Wakefield talking:
    http://www.youtube.com/watch?v=l67fWVrw8xU

    It is a very clear depiction of the process by which information is distorted, withheld, interpolated, and used for propaganda.
    This is an age-old tradition that has been super-charged by the internet...
     
  14. Lee

    Lee

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    You guys are citing Andrew Wakefield as evidence of scientist being badly treated for challenging the scientific consensus? Really?

    Wakefield's "MMR causes autism" hypothesis got taken seriously enough to get tens of thousands of hours and tens of millions of dollars of followup. He was wrong - there is no remaining question of this. MMR has no link to autism. Period. None.

    Even more, Wakefield committed fraud. He misrepresented patient diagnoses, he misrepresented the analyses he did. He was on the payroll of attorneys suing the MMR manufacturer at the time, and did not disclose this blatant conflict of interest.

    He abused patients. He did enormously painful and risky lumbar punctures to collect spinal fluid and biopsies of gut tissue on autistic kids, for no clinically relevant reason. He did this while being paid by attorneys to come up with evidence to allow them to sue the MMR manufacturer for causing autism.

    His fraudulent work, and his claim that MMR causes autism, caused people to stop getting their kids vaccinated, which caused Measles rates in England to climb from essentially zero, to very not-zero. Children have died from measles as a result. Wakefield caused this.

    Wakefield's papers were retracted because he committed scientific fraud. His medical licence was removed because he abused patients for personal gain. He has not been hounded because 'the mainstream' cant stand a challenge - he has been run out of science and medicine because he has forfeited any right to be in those fields.
     
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  15. Wonko

    Wonko Senior Member

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    As my recollection is at variance with some information you are stating as categorical fact I wonder if you would be so good as to provide a direct quote or reference to a paper where Wakefield stated that "MMR causes autism".
     
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  16. leela

    leela Slow But Hopeful

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    Lee, that is one side of the story. You might watch the video to see what you think of the other side.

    And yes, really, "we guys" are referencing Wakefield, who never said "MME causes Autism."
    (Or, from what he tells, did any of those other things you regurgitate from the propaganda.)
     
  17. Lee

    Lee

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    Further in the description is the following:

    "It has now also been shown that use of the MMR vaccine (which is taken to include live attenuated measles vaccine virus, measles virus, mumps vaccine virus and rubella vaccine virus, and wild strains of the aforementioned viruses) results in ileal lymphoid nodular hyperplasia, chronic colitis and regressive developmental disorder including autism (RBD), in some infants. Before vaccination infants were shown to have a normal developmental pattern but often within days to weeks of receiving the vaccination some infants can begin to noticeably regress over time leading to a clinical diagnosis of autism. The MMR vaccine was first used in 1968 and a study in Sweden has shown recently that the prevalence of children with autism has significantly risen. The study has shown that the autistic spectrum of disorders may now affect 1% of the population."

    That quote is from Andrew Wakefield's patent application, linked above - just one of the places where there is remaining documentary evidence of Wakefield's claims that MMR causes Autism.

    When Wakefield says otherwise, he is lying.

    -----
    In addition, from Wikipedia - but note the references within, and feel free to track them down. This is an accurate report:

    http://en.wikipedia.org/wiki/Andrew_Wakefield
    Between July 2007 and May 2010, a 217-day "fitness to practise" hearing of the UK General Medical Council examined charges of professional misconduct against Wakefield and two colleagues involved in the Lancet paper.[72][73] The charges included that he:
    "Was being paid to conduct the study by solicitors representing parents who believed their children had been harmed by MMR".[72]
    Ordered investigations "without the requisite paediatric qualifications" including colonoscopies, colon biopsies and lumbar punctures ("spinal taps") on his research subjects without the approval of his department's ethics board and contrary to the children's clinical interests,[72] when these diagnostic tests were not indicated by the children's symptoms or medical history.
    "Act[ed] 'dishonestly and irresponsibly' in failing to disclose ... how patients were recruited for the study".[72]
    "Conduct[ed] the study on a basis which was not approved by the hospital's ethics committee."[72]
    Purchased blood samples - for 5 each - from children present at his son's birthday party, which Wakefield joked about in a later presentation.[72]
    Wakefield denied the charges;[74] on 28 January 2010, the GMC ruled against Wakefield on all issues, stating that he had "failed in his duties as a responsible consultant",[8] acted against the interests of his patients,[8] and "dishonestly and irresponsibly" in his controversial research.[9] On 24 May 2010 he was struck off the United Kingdom medical register;[13][75] co-author John Walker-Smith was also struck from the medical register, while junior author Simon Murch was cleared.[13][76][77]
     
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  18. leela

    leela Slow But Hopeful

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    He was referencing a specific MMR vaccine, that was known to cause encephalitis, not the MMR2 vaccine from Merck.

    Wikipedia, wonderful as it is, is not always reliable.
    Try looking up Myalgic Encephaalomyelitis on it and see what happens.

    Ian Lipkin recently referenced Andrew Wakefield's work in a paper, by the way.:
    http://www.ageofautism.com/2011/10/the-wakefield-rehabilitation.html#more
     
  19. barbc56

    barbc56 Senior Member

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    Just because someone is cited in the references says nothing about whether the author's science is in sync with the referred scientist. It's important when writing a paper to cite everything that is mentioned. The author may simply be recounting the history, showing the flaws in other papers to make a case for his/her hypothesis.
     
  20. Lee

    Lee

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    Wonko asked me to provide a direct quote or reference where Wakefield claimed the MMR causes autism. leela claimed that Wakefield "never" said that MM[R] causes autism.

    I provided a direct quote from a wakefield patent application where he says that MMR causes autism.

    And leela's respons is 'oh, he didn't mean THAT MMR. He meant this OTHER MMR."

    Come on.
     
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