Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Contaminated blood

Discussion in 'Other Health News and Research' started by Large Donner, Mar 3, 2015.

  1. Large Donner

    Large Donner Senior Member

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    I found this video very interesting and how the politics of contaminated blood play out even when the government admit liability. (basically they admit it but dont). It also struck me that if known contaminates where in the blood in the form of known viruses etc (as in the case of this video above) and the further implications of that spreading throughout the general population what chance do we have of them admitting to and finding yet "unknown viruses".

    This is a rather poignant question in light of ME research and the current Lipkin studies. We must not forget that its not just about what an investigator can find but also what he/she will be politically allowed to find, divulge or even just look for.

    When we consider the issue of recombinations viruses that came to light out of the "XMRV" issue that so many people claimed not to know even existed in the first place this is a very politically charged arena. In the video above the guy infected talks about how he was first told that he was infected but the viruses where harmless. Which later proved not to be the case.

    I am somewhat miffed by many of the statements Lipkin has made, for example in the Montaya study, when they found 85% of the serology samples had RV activity he said "given the history of RVs in CFS it is unlikely to pan out so doesn't plan to look". Also he said something along the lines of "it wouldnt surprise me if this was an unusual response to a simple virus", long before this current study. I also am very wary of both him and Mady Hornig constanly using the term "neuropsychiatric".

    This is especially worrying when you try to put these direct quotes form Hornig in to context also:

    "Every time you have a thought, you have a biochemical reaction — and those biochemical reactions also interact with your immune system,”

    and....


    "In the later phases, since cytokine activity decreased, patients may need a boost in activity."

    When you add all of these comments together with this latest "hit and run" theory this is no more than the long established "kindling" theory of "virus come virus go" and "what caused it isn't what is perpetuating it".

    This is pure feed for the psych stress loop theory and its remarkable they can make hit and run statements when they are supposedly not claiming the latest findings are a cause. This to me is more bizzare in the context that this latest paper points at inflammation being present yet the IOM only two weeks ago was rushed out in order to claim there is no evidence of inflammation which allowed then to play a slight of hand on the whole ME community and actually drop the name ME when it was the label "CFS" which was the most irrelevant. All of the discussion after the IOM was based around the SEID label being good or bad, and I feel the main point was missed yet again.....they pulled of their favourite trick of simply making a disease disappear ......ME!!

    Its also obviously flawed to claim a hit and run theory with a given virus for example EBV potentially starting the disease but somehow dismissing potential pathogens after the 3 year mark. Remember Lipkin also said it would be unethical to do tissue samples and biopsies on PWME at the same time dismissing any RV further investigation even after the 85% figure in the Montaya study.

    Surely the best hypothesis from all of Lipkins investigations so far would be "there is a potential major virus that is not so easy to detect that is somewhat dormant until another hit on the immune system happens. That second virus may then not be easily observed in the patient at the 3 year mark or may even be absent, but the disease wasn't directly caused by it anyway. He really needs to further investigate issues like the Montaya serology samples rather than making strange claims that there is little point as they wont pan out anyway because its CFS!!!!

    I for one am not still ill after 8 years because my cytokine activity decreased at the three year mark and I failed to "boost my activities".
     

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