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No XMRV in Sjgren's patients

Discussion in 'XMRV Research and Replication Studies' started by Tony Mach, Jan 8, 2012.

  1. Tony Mach

    Tony Mach Show me the evidence.

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    Upper Palatinate, Bavaria
    There is still the claim that "XMRV was found in Sjgren's patients" floating about in the internet, so I thought I find out. This is the response I got from Gabor Illei

    Of course you are free to conclude that he has a political agenda to hide "the truth" or that he is incapable to find out the truth, but you would thereby without evidence! questioning his scientific integrity. And some people rightfully take issue when scientists are smeared without a hint of evidence.

    In my view occam's razor says there is no XMRV in patients no matter whether cancer, ME/CFS, Sjgren's or any other disease.

    What I find especially unhelpful is that these cases of contamination are taken as proof that several diseases are somewhat "similar" or have something in common when the only "evidence" for this is contamination. No, diseases are not "all the same" and I regard that view as dangerous for all patients.

    And don't try to move the goalposts: If a study was good enough for you when they found XMRV, then it should be good enough if it turns out the other way.
     
  2. pollycbr125

    pollycbr125 Senior Member

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    yorkshire
    try telling the UK that Sjgren's isnt like ME/CFS they obviously think it is seeing as they have managed to syphon off money that was meant to study ME into Sjgren's research
     
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  3. Tony Mach

    Tony Mach Show me the evidence.

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    Upper Palatinate, Bavaria
    I understand that you are angry that money for ME/CFS is spent on Sjgren's. But as far as I know there are other threads on this forum on that particular topic and I think it would be better to discuss the topic you raised there. Also, I am not aware that this particular research (with regards of XMRV and Sjgren's, which wasn't even published!) was used in the UK as evidence for their decision.
     
  4. floydguy

    floydguy Senior Member

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    Hey Tony,

    I think I figured out that you don't have much hope for Mikovit's theories. Maybe you could outline where you think research should be taking place?

    Floyd
     
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  5. currer

    currer Senior Member

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    HI Tony,

    I would like to second that request by floydguy.
    I have put up a request to you on another thread to ask you to tell us something about your experience of having ME in Germany - there was an interesting contribution from a norwegian sufferer recently and I know little about the situation in other European countries.

    Are there good treatment centres on germany? and what about the medical care there?
    Is the psychological lobby powerful?
    I would be interested to have some background on this.
     
    Jemal, SOC, RL_sparky and 1 other person like this.
  6. ukxmrv

    ukxmrv Senior Member

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    Tony,

    When the original Science study on XMRV came out I went through it with researchers and scientists that I knew. I spent time reading commentaries on the various parts of it and tried to teach myself as much as I could about the methods used. I'm lucky to have people in my family qualified to help and occasional times when my brain works.

    Before you joined this group you missed out on the hundreds of pages of patients debating every angle of the Science XMRV paper. This was never a time of blanket acceptance and any loss of critical examination. Many of us who welcomes that original paper, still do and would like to see the research continued. It's a valid point of view based on our judgements.

    For every significant XMRV/MLV paper that came out I did the same thing in examining the evidence closely. There is no double standard here. It can take time for we patients to work through the data and come to our own conclusions.

    I'm sure that those of us with energy left will do the same thing to the Sjgren's paper if it is ever published. If we never see the paper and the methods used we will never know.

    One thing I have learnt through having ME is to think for myself.

    I'd like to see the data and not rely on assumptions from researchers who may be scared for their jobs, not interested in a controversial area, just plain wrong, totally correct about their contamination or factors that I cannot determine without examination.

    Having a non-critical acceptance of what any scientist says is wrong and you are applying the double standard here of asking us to blindly accept this doctors conclusions with no evidence.
     
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  7. Tony Mach

    Tony Mach Show me the evidence.

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    Upper Palatinate, Bavaria
    OK, let's play fantasy medical research.

    Search for Pathogens:
    1. Lipkin "deep sequencing" / "next generation sequencing"
    2. Enteroviral Capsid Protein VP1 (Chia, Chapman, and others)
    3. The research into involvement of HHVs and ERVs (to name only two groups) seems not so promising to me, but should continue nonetheless.

    Other:
    4. Search for autoimmune pathways (search for antibodies, etc.)
    5. Nutritional involvement (see Terry Wahls in MS), but I don't think it is the cause, but bad nutrition might make it hard for a body to shake off an infection

    They all can (and should) be done in parallel. (I probably forgot some other points)

    If there is something "easy" to be found, Lipkin will find it.

    If these lines of inquest don't yield conclusive results, one should consider:
    a) Fragmented sub-groups (with POTS, without POTS, etc.)
    b) Different causes for different subgroups (e.g. first one autoimmune, second one enterovirus, etc.)
    c) Complex interactions (If hit by Virus X, and having persitent HHV-4 infection, and )



    Still dark ages in Germany. Many physicians are children of idealism ("Mind over Matter") and proponents of the psychosomatic school of thought when it comes to CFS. Usually diagnosed as "Burn Out". At the fridge you find proponents for "environmental toxins" or "stress-immune" explanations (helpless retreats in the face of the psychosomatic onslaught here). Most doctors don't want to touch ME/CFS or Fibromyalgia patients with a ten foot pole and send you right away to some shrink.

    The sole highlight seems to be one doctor and her team in Berlin (Prof. Dr. med Carmen Scheibenbogen at the Charite) she seems to have a clue (from my point of view) about the disease, but I guess she is overrun and I don't know exactly what she does

    A friend of my has some sort of heart problems (I guess its called palpitations, which may or may not be typical for ME/CFS), so she gets treatment for this from a cardiologist but the doctor stays clear of the CFS diagnosis, not to mention ME. Best strategy is to find one area (heart, POTS, sleep, pain, etc.) and get treatment for that. They say about germans: "Don't mention the war." If you have ME/CFS in germany I'd say: "Don't mention ME/CFS."
     
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  8. Tony Mach

    Tony Mach Show me the evidence.

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    Yeah, maybe the few loud "zealots" drown out the broader picture for me. The problem for me is that these voices are lobbying everywhere and they accept only the word of one person: Dr. Mikovits. Everybody else is stupid or a lying bastard. If this were some area of say physics with some theory that we all live in the matrix or whatever, it would be one thing to "debate" (as far as it is possible) with these "zealots". But we are talking about a disease or maybe several similar disease(s) that affect many people (including me). And these "zealots" lobby for dangerous unproven treatments like anti-retrovirals. They are immune to scientific reasoning. They make it easy to dismiss all patients as crackpot psychiatric cases. If they get it their way, not only will they stay sick forever, but everybody else will stay sick forever I will not tolerate this. I am personally invested in this and I will not accept a BS treatment just because it fits somebodies fantasy or confirmation bias. These people act as my enemy, far more than Wessely is at the moment and I will treat them accordingly.
     
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  9. currer

    currer Senior Member

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    Well, Tony, I suppose if a retrovirus is confirmed as causative in ME and treatments are developed on that basis you do not have to participate if you are so against it.

    There is a problem of difference in perspective here. I have been ill for decades and investigated early on in my illness many of these other approaches that you mention. I am interested in the retroviral hypothesis now. You may not agree, but you cannot stop other people from taking an interest in subjects you disapprove of, for reasons that you may be unable to appreciate.

    I am sorry the medical interest in Germany is so little in this disease.
     
  10. alex3619

    alex3619 Senior Member

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    One thing for me that I have a problem with is that most researchers think antibodies when they think autoimmune. The entire autoimmune category needs to be expanded to include aberrant immune cytokines and other hormones - this does happen, but is often overlooked too. For example, why do MS, RA and ME all have elevated cleaved RNase L? In the case of ME its due to elastase apparently, but why and how does this differ from the other two? Bye, Alex
     

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