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Knitting Equals Pleasure, Despite ME/CFS
Jody Smith loves knitting. Again. She thought her days of knitting and purling were long over but ... she's back ...
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Retrovirus Conference in Prague, April 29-May 4, 2010

Discussion in 'XMRV Research and Replication Studies' started by parvofighter, Mar 3, 2010.

  1. redo

    redo Senior Member

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    Does anyone know anything more about when this study will be publihed?
     
  2. HopingSince88

    HopingSince88 Senior Member

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    Maine
    Yes, Oerganix! What you said! I am 22 years and 57 years...and I too want to dance again!
     
  3. awol

    awol *****

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    Hoping....I hope you get your chance!
     
  4. HopingSince88

    HopingSince88 Senior Member

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    Maine
    Thanks, Awol. I really did love dancing, once upon a time. It is one of the things I miss most.
     
  5. hensue

    hensue Senior Member

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    :Retro smile:redo,
    where did you see the first positive study?
     
  6. redo

    redo Senior Member

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    I was quoting the durch press release.
    Positive ‘XMRV-study’ a matter of time.

    They are writing that it's only a matter of time before we can see the first positive replication study. So what I was wondering was if someone knew more about it. Like who has performed it, when we could expect to see it etc.
     
  7. Rivotril

    Rivotril Senior Member

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    from the link mentioned above:
    Dr. Francis Ruscetti of the renowned NCI – an U.S. government agency – told Ortho that he hopes this controversy will all die away in 2011. He is especially surprised about the fact that the investigators of the UMC St. Radboud at Nijmegen concealed in their publication that the Americans found traces of XMRV in the same blood samples from the Dutch patients. "I don’t know how they get away ethically with this," said Ruscetti. "I don’t think that is good science."

    today it was in a Dutch newspaper Van der Meer was angry about this and he has emailed ruscetti for explanation, but didn't get an answer yet...
    What a clown, he isn't even a virologist, and he's discussing with top retrovirologists from NCI about this

    I have a link to dutch article, but its almost the same as the ortho thing, no essential novelties so no translation:
    http://www.refdag.nl/achtergrond/gezondheid/speurtocht_naar_een_virus_1_482753?localLinksEnabled=false
     
  8. Rivotril

    Rivotril Senior Member

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    "Van der Meer, on his turn, is upset by this remark from Ruscetti. He has been e-mailing the American for a clarification, but is still waiting for a response."
     
  9. Two quick points.

    I agree, in general people appear not to die from CFS. Importantly though, we actually don't know as CFS is not deemed to be a fatal disease (officially). No official mortality studies have been carried out, except 1 by Leonard Jason.

    However, if one asked Cheney, Peterson, Lapp, Klimas, Lerner, Montoya etc - can people die from CFS - the answer would be, in some cases - yes.

    The patient community knows, people do die from 'CFS', and recovery is exceptionally rare.

    Full recovery rates, range from 2 - 8%, which means 92-98% of people never FULLY recover.

    Anyone who doubts 'CFS' kills people at all, simply Google CFS ME Memorial list or listen to Annette Whittemore herself.

    Remember that 40% of people with Rheumatoid Arthritis die from cardiovascular events. Would most people consider Arthritis a fatal disease? This includes Diabetics also. ME causes significant inflammation, and has already been demonstrated by researchers in Scotland to put patients at risk of 'future cardiac events' - via increased oxidative stress. (Professor Jill Belch, University of Dundee, Scotland). ME profoundly affects muscles, and the heart is a muscle.

    No one knows if being extremely weakened at a cellular level is irrelevant to long term survival rates. Science would suggest being mitochondrially impaired would significantly reduce lifespan. (Just look at people with 'Mitochondrial disease'). Often dead in their thirties, fourties - often beforehand they develop Diabetes and heart complaints. ME can cause such severe mitochondrial impairment, that one is unable to complete a bowel movement. I wonder therefore, how weakened is the heart? We know already that the heart is affected both with ME patients complaining of chronic angina/chest pain symptoms not relating to anxiety and significantly reduced V02 max testing results.

    I would entirely agree that in general, 'CFS' is not considered a fatal disease at all, however no research has been carried out into the longevity of patients. We simply don't know how serious the death risk is. Currently we are guessing a small percentage (due to lack of research).

    However, one must ask the question - where are the severe ME patients in bed/home bound since childhood who are now 60/70 years old? It appears they have all expired before their sell by date from Cancers, strokes, heart attacks - which fits in perfectly with a model of system inflammation and mitochondrial dysfunction.

    I am totally with you in that CFS is a stigmatised illness and people stay in the closet, however very few would be able to 'hide' their disease - unless one has a full time carer and can live a 'career' stuck indoors, or not be recognised in ER. However, statistically there must be people who are famous who are severely affected, and as you mentioned, we simply don't hear from them due to their fear of coming out.

    If I was famous and suffering from a serious debilitating neuro immune disease - I would tell everyone to prevent deaths and suffering via my significant influence over others to increase federal funding and reduce stigmatism.
     

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