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XMRV Article in Chicago Tribune and other papers

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by kurt, Jun 8, 2010.

  1. serenity

    serenity Senior Member

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    hi Jill, sorry - i know you addressed to Martlet but you quoted a post of mine that she answered.
    i can't speak for Martlet but i think all that we're tryin to say is please continue to advocate for us, we need you - but just watch statements that are off base or inaccurate. Aids in Africa only worse is inaccurate & politically incorrect & i just dont' think that will help us.
    (i also want to say i have extreme sympathy for your situation. i can't imagine taking care of 2 sick boys if you are sick yourself.)
    i'm gonna delay further discussion about this until we hear the full quote & see is Ms Judy was quoted accurately :)
  2. Well this is most interesting, if one is on the search for proving a causal factor - however one must remember causal factors are not needed to prove a disease process.

    What if you're completely wrong Mr Kite (I could equally be as wrong and you are correct) and XMRV has everything to do with CFS, including the same vector of transmission as HIV? I feel this may be possible when looking at was has been found already to date in such a short time. Namely CREB gene insertion of XMRV (affecting Mitochondria), T Cell, B Cell, NKC Cell infection, and the fact XMRV is activated by NF-KappaB and affects androgens, and the fact XMRV can alter Red Blood Cells.... well all these things have been found in CFS already and not shown in any other disease. This is important.

    If one looks at the biological capability of XMRV, and then looks at the symptoms and research into CFS - they match, exactly. Hence Judy Mikovits has already devastated the pro-psychiatric industry of selling 'CFS' as a 'life-style-choice' - thus hiding XMRV and neuro immune disease from the medical profession and wider public. Psychiatrists and the CDC suggest treating CFS with behavioural therapy, exercise, and anti depressants. (This is what the CDC have stated and suggested) yet XMRV cannot possibly be treated this way, and neither can ME, which now Harvard University 'don' Dr Komaroff says is an appropriate name to describe CFS.

    For many, CFS 'hides' neuro immune disease. Dr Komaroff isn't just saying it, he's showing it in presentations. Judy Mikovits is showing it with blood tests.

    Anyone with a diagnosis of ME in the UK (re-branded as the unique UK behavioural disorder of CFS/ME) hasn't been able to donate blood in the UK since around 1986.
    Anyone with a diagnosis of CFS who is XMRV+ is now intimately introduced to XMRV as they cannot donate blood because of XMRV, and they risk passing on an incurable virus to their unborn child.
    Anyone with a diagnosis of CFS who is XMRV+ can already prove in their case (not all cases of 'CFS') - XMRV has caused neuro immune disease, and they don't need science to tick any box to confirm it.

    This is a very important point. CFS cannot be diagnosed with evidence of organic disease. CFS can only be diagnosed when there is unexplained persistent fatigue lasting 6 months, that is life limiting and not relieved by rest. Any physical or mental condition can cause this. And so CFS is not an appropriate label for a specific disease or illness. If you watch Dr Komaroff's excellent presentation he lays out CFS in a specific unique disease causing manner, and then suggests it should be called ME.

    XMRV eradicates the label CFS, because XMRV is a retrovirus that inserts itself into human DNA and therefore not 'unexplained'. It is explained.

    So how can someone with XMRV claim to have a disease? Get tested now for evidence of disease, that's how.

    How is this possible? Cytokine testing showing inflammatory reponse, Natural Killer Cell Profile showing immune supression, RNASE-L Profile show anti-viral immune supression, Evidence of Mitochondrial dysfunction (poor ATP function) and associated evidence of CREB gene alteration, increased Lactate in brain/spinal cord fluid/muscle (proving Mitochondrial dysfunction), other evidence of inflammation such as premature bone loss in absence of poor diet and low calcium intake, and a plethora of other assays - in any individual would show disease states ranging from immune to brain to vascular.

    One doesn't need to PROVE XMRV anything. No one knows what causes cancer, we know the proceses, but the cause? We know zip. Same goes for many other diseases.
    Cancer is simply a consequence of? No one knows. Different cancers can be caused by different things. Cancer doesn't need a single cause, and so (technically) CFS or ME doesn't.

    There are, of course many forms of Diabetes: Diabetes, Gestational Diabetes, Diabetes Insipidus, and Phosphate Diabetes. Diabetes, does thus not need a single cause either.

    On your premise, everyone with cancer, cannot be told they have a disease, until we know the cause, of cancer. This is fine and for you to say and I won't suggest you can't, for me personally it just doesn't fit with my disease or other people with ME who've read research. No cause of CFS needs to exist, ever for anyone to have a diagnosed neuro immune disease, they just need evidence OF 'disease'.
    Which is easy if you have XMRV and have severe ME - sadly.

    To me the fact I can no longer have children with a woman is devastating. And to a woman, even more especially. I am sure everyone sitting at home who is XMRV+ isn't waiting for anyone to 'confirm' if XMRV makes them sick, they know it, and already have evidence, or can produce it if necessary. I am just waiting for recognition from the CDC, so I am allowed to go to hospital!!!!!! I am currently not allowed as I am told this is 'illness seeking behaviour' and my treatment regimen is to 'de-medicalise' my illness by not discussing, talking, or seeking help for it - because to ask for help, the UK NHS says is evidence of Somatization/Conversion disorder (Hysteria). Thankfully, outside of the UK, this is not the way.

    Why am I in my bedroom now and not in Hospital? I am ill enough to be. I am being cared for by people who have traded in their own freedom and life to care for me. It's absurd. I should be in a hospital like everyone else with severe ME and be given Mitochondrial support, anti inflammatorys, anti virals, anti-retrovirals, night time oxygen, pain control, a home care support package and access to a counsellor. (Currently all denied because apparently XMRV and ME 'does not exist in the UK').

    The problem is for the Department of Health is, I exist. Hence they have done their best to kill me, because they never wanted me to find out about XMRV. For me, Mikovits is an angel, because she created interest in the truth and put the angle-poise spotlight of Science right down onto those letters 'C F S' & (to their fury) 'C D C'. And therefore, XMRV (for me) is directly linked to CFS.

    Now here is a suggestion not a personal attack.

    Phoenix Rising could consider suggesting that messages posted always take into consideration that users of the forum who are XMRV+, who are reading the XMRV SECTION of Phoenix Rising do not feel sidelined and denied as existing.

    Currently this doesn't happen because people like me can be pushed aside, this is expected, I can deal with it. (No one likes me anyway as I speak out because no one else can or will in the UK). This is part of the process of life, no big deal.

    But what when 500 of us are on here XMRV+ , and people are still writing messages like XMRV doesn't prove CFS etc? Hmm. Well others may get quite insulted by it to be honest, like it is being suggested they aren't allowed to have XMRV, or are freak cases of nature. It's rather weird to feel isolated in an XMRV sub-section of a forum, when you have XMRV!!!!! LOL.
    (If these messages where in the CFS section, then fair enough).

    None of us to blame for any of this, we are all passengers injected with the virus of Psychiatry who prevented and influenced research for decades. If there had been neuro immune research and the label 'CFS' had not been manufactured that fateful day in America, we wouldn't be forced to 'debate' and discuss and to hope and pray someone will help us.

    So far we have Judy Mikovits, but we need more of her. Maybe Dr Kerr can clone her?!
  3. rebecca1995

    rebecca1995 Apple, anyone?

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    I'm curious why Dr. Mikovits' comparision of XMRV to HIV has caused so much concern. People seemed happy when Dr. Klimas said, in the New York Times in October, that she would rather have HIV than CFS in 2009. And a quote from Dr. Loveless has been circulating for a long time; it's something to the effect of, CFS patients feel the same every day as AIDS patients two months before death.

    I do feel that Dr. Mikovits is held to a different standard than other researchers. I believe the meme that she is angry and inappropriate is being perpetuated by those with a vested interest in preserving the status quo.
  4. rebecca1995

    rebecca1995 Apple, anyone?

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    Serenity, could you clarify for us which of Dr. Mikovits' statements you consider outrageous, and why?
  5. free at last

    free at last Senior Member

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    Thank you Natasa, thats a very kind thing to say to me, very uplifting. Funny really, i went out today and saw what looked like some orange peachy poppys, i picked one and showed my partner, ( i know a man into flowers not exactly Mike tyson is it lol) when i came back i looked at your picture, i didnt look at it this morning. same mix of colours right there. I know its just a coincedence. but i like those kind of coincedences.

    Here is a gift for you. I am a amature astronomer, i take photos of the moon and planets with expensive equipment ( telescopes and special cameras ) back in the days i had a little money. I took these at different times in my garden with the telescopes and assembled them on paintshop.
    All are real photos by me, except the sun ( top left hand corner ) which is fake i photoshoped it. I hope this size photo is allowed, the actual photo is much larger. but would take up the intire page. i wanted to leave a link. But my identity would be seen. Dont know why that worrys me. Maybe it shouldnt ?
    Hope you like it, solitude. in far away places and worlds. The image shows the planets Jupiter mars venus Saturn, and the moon

    [​IMG]
  6. Kati

    Kati Patient in training

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    What Jill said. We for the most part are no scientist. How dare people make such judgements. We have sick people, we are some, some have CHILDREN that are sick and deprived of a "normal" childhood.

    Dr Mikovits is offering hope to millions of people for the first time in the last 25 years. And she knows what she is talking about. Please, stop poo-pooing her, because it hurts all of us.
  7. serenity

    serenity Senior Member

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    crud Kati i just gave the long answer & it didn't post. can i give a short answer for now & go eat dinner with my husband - please, if you can go back & read all of my statements i think it will clarify & answer most of your questions.
    i am coming around, i will say that. if everyone got sick & our economy collapsed then i see how that statment is possible...

    oops, Rebecca not Kati - sorry!
    this thread has gotten too long & confusing for me :)
  8. natasa778

    natasa778 Senior Member

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    free at last thank you! I love the photo, and the fact that they are 'real'... not drawings... WOW. funny coincidence I've been googling for images of planets a lot these past few days as son's class is having a week learning basics about the solar system. now can't wait to show him this one!!
  9. Adam

    Adam *****

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    I actually thought Judy M always 'came across' as reasonable and well- mannered. I must have been mistaken.
  10. free at last

    free at last Senior Member

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    Hi Alex this is exactly the sort of thinking that i was hoping for, I havent seen any long term assesments of the possible outcomes anywhere yet. and yours is the first. You have also highlighted many problems in trying to understand this, ( many more than i realized ) But that is why i asked you. I wonder if the goverments of the world are presently doing just this Alex. surely after what we learned about HIV they must all be secretly quite concerned. I do suspect they have ( or presently are ) doing this kind secret assesment behind closed doors. of course we are not going to be told anything. ( not even if there seriously looking into ) But i would be very surprised after the high figures of the science paper, and what we learned about HIV, if they are not. Checking old blood banks seems a great idea, becuse if they could pin point a time of infection jump. to the present 5 % figure this should show how far, ( how sucessfull ) XMRV has been in that time. and a expected growth curve should be able to be reasonably guessed at. Though of course as you point out. its certainly not reliable, Even the expected infection rate of Swine flu was badly guessed at by the UK health department. And they would have more reliable data on that i would have thought than XMRV. Still its a topic that probably should have a thread for itself. Its a very important question. And one possibly at the heart of Judys Ms statement. I wonder if shes been thinking along these lines recently Alex that lead to that bombshell statement ?
  11. Adam

    Adam *****

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    Rebecca - be curious no more. I have the answer - jealousy.
  12. serenity

    serenity Senior Member

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    Free At Last & Alex, exactly where i was going but better worded - haha! ;)
    exactly, whew, i'm glad others are on the same track as me.
    Kati * my mistake here i meant Rebecca sorry about that! * if you weren't able to get it all from my previous statements it was the Aids in Africa quote that was whoo wow oh me on my - to me!
    because basically we dont have their poverty.
    that's as clear as i can be but i am gettin where this is going, doomsday scenario far in the future our economy collapses cuz everyone is sick.
    i finally get what might have been meant & thanks to all who stuck around to give opinions until i sorta see it.
    :)
    again i am gonna wait for the full text to come out to discuss it further out of respect.
    (remember, i want to understand & believe what this lady has to say. others who dont', well, it took me awhile to come around & i was trying... so i think we need to be careful what we say. if this was said then eek, but let's hope it was taken out of context.)
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think it's abundantly obvious that we can't just relax, sit back and 'let science take it's course'; our persecutors have been manipulating and fabricating the science and waging PR campaigns against us for decades. It's why we are where we are. Although I do think her Africa comment was counterproductive and wish she didn't say this.
  14. Martlet

    Martlet Senior Member

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    I believe Dr Klimas was referring to her own patients. There is treatment for her HIV+ patients but none for her ME/CFS patients. What she did not do is compare CFS in the USA with AIDS in Africa, which Dr Mikovits appears to have done. There is a huge, huge difference

    Are you saying that members here in this forum who would prefer to see a more professional demeanor on the part of our advocates have a vested interest in keeping things the way they are? Please elaborate.
  15. Martlet

    Martlet Senior Member

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    Who is jealous, Adam? The discussion here is between forum members, not between health-care professionals. Are you suggesting that forum members, fellow sufferers are jealous of Dr Mikovits?
  16. Martlet

    Martlet Senior Member

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    I agree with that. I think we all agree with that.
  17. V99

    V99 *****

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    Mikovits said the continent will be worse than Africa. I believe, according to wiki, that's 528 million people. 4% is about 21 million people. What would the projections be with this? If it does cause disease and research is delayed?
  18. Kati

    Kati Patient in training

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    Serenity my comments were not aimed at you.
  19. V99

    V99 *****

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    Just looked at alex3619 talking about the virus doubling in 5 years, well that would be 40 million. Is Aids in Africa about 25-30million? If it does contribute to a variety of diseases... Well I know where she is coming from.
  20. lululowry

    lululowry Senior Member

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    Nope, I think reasonable and well-mannered is in the eye of the beholder.;)

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