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Dr. Judy Mikovits IACFS/ME Newsletter Apr 2010 Q & A

Discussion in 'XMRV Research and Replication Studies' started by shrewsbury, Apr 21, 2010.

  1. fingers

    fingers Senior Member

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    Well, somebody's got to chain you yanks. If you need a lift Otis, let us know. :D
    (not sure how this will translaste, talking of which that Bavarian guitarist sounds interesting, but went way over my small head...????)

    On a slightly more serious note...well, a much more serious note for me....this was the important Q & A for me:
    Q: When you assess signs/symptoms of patients with positive XMRV, are there any that track or don't track well with XMRV positivity compared to CFS patients as a group?

    A; I am not a clinician and right now we dont have sensitive quantitative assays to monitor viral load so we have not actually tracked symptom severity and XMRV positivity.


    I read this as there's a lot more science and analysis to do, and so far there's onehelluvalotta conjecture. Even the correlation between XMRV and ME/CFS is vague due to the poor definition of the latter.
  2. gracenote

    gracenote All shall be well . . .

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    Dr. Mikovits responds to these concerns here:

    Q: What are your current % of positives in CFS? In controls?

    A: In CFS disease satisfying the Canadian consensus criteria, we have isolated virus from more than 300 patients of ~400 tested but we have serological evidence in another ~10% of CFS patients fulfilling CCC criteria, from whom we have not isolated virus, clear evidence of infection but the significance of which is not known.

    . . .

    Q: Are your "hit rates" different in the samples sent to you since the Science paper?

    A: Not as long as the physicians sending the samples are diagnosing as Dr. Peterson does on CCC criteria. In fact the hit rates from overlapping diseases more than we expected now ~35%.
  3. Dreambirdie

    Dreambirdie work in progress

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    I am going to pretend like you and Koan made total sense to my virally laden brain---is that a barely loaded banana, or a vacuum looming by?
    A Chinese room with zamboni mantra masters speaks volumes.

    Now I know why my saliva is dangerous.

    Cool! Yeah! Alright! :cool::cool::cool::Retro smile:
  4. Otis

    Otis SeƱor Mumbler

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    Help I've fallen and I need a Lift Up

    Quite. I'd do it myself but the psych lobby would really chew me up. Just keep Dr. Mikovits on the loose please. :Retro smile:

    Yes help, my own company won't install one to get me on me weary legs in the morning. ;)

    Otis (wannabe lift operator)
  5. acer2000

    acer2000 Senior Member

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    Heh you know thats interesting because its one of the only cytokines (well its not really a cytokine sort of) that is not tested by the REDlabs/VIPDx "CFS" cytokine panels. At least last time I had it, this was not included... Maybe its hard to test?
  6. consuegra

    consuegra

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    "The ONLY immune marker which correlated with XMRV infection 100% was decreased Interferon alpha."

    What does this mean? I always assumed that elevated Interferon alpha as measured in serum was an indication of high viral activity. The old Immunosciences CFS profile had a target level for Interferon Alpha as <12.5 and the current Focus Lab Chronic Fatigue panel III has normal being <9.

    Chris

    http://cfspatientadvocate.blogspot.com
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I was curious of what the long-living cells are. If I know what type of cells are long-living, I can see if my symptoms reflect a dysfunction in those cells, showing XMRV is likely very progressed in me.

    I am assuming that GI and immune system and hair are short-living cells. I thought I remember my mother being told that this is why chemo causes nausea and loss of hair. The GI cells have to be replaced all the time and chemotherapy for cancer stops cell growth.

    I assume neurons are longest-living cells. Did that rhesis macaques study find XMRV in neurons? I make this assumption because I remember somewhere someone saying at one time scientists thought neurons didn't make new cells. (So these cells must have to live a long time.)

    If that's the case, I'm cooked. I definitely have evidence of cognitive problems. And the cognitive problems came after the fatigue. And if I have a relapse, I notice the cognitive problems get worse later. I thought this might show a stage or the disease. But I also wondered if I have just as much cognitive problems when the fatigue is real bad, but I can't tell because I don't try to do anything then. I don't make as many mistakes because I don't do as much.

    Well, thanks to Google, I learned something new. The longest living cells are neuron cells that are also the biggest. A certain kind of neuron cell is from head to toe in the body. Sounds weird, but it must be true, I read it on the Internet. LOL

    Any other long-living cells?

    tina
  8. usedtobeperkytina

    usedtobeperkytina Senior Member

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    ok

    Might the low interferon alphas explain problems with natural killer cells?

    Wikipedia says...

    Interferons (IFNs) are proteins made and released by lymphocytes in response to the presence of pathogenssuch as viruses, bacteria, or parasitesor tumor cells. They allow communication between cells to trigger the protective defenses of the immune system that eradicate pathogens or tumors.

    IFNs belong to the large class of glycoproteins known as cytokines. Although they are named after their ability to "interfere" with viral replication within host cells, IFNs have other functions: they activate immune cells, such as natural killer cells and macrophages; they increase recognition of infection or tumor cells by up-regulating antigen presentation to T lymphocytes; and they increase the ability of uninfected host cells to resist new infection by virus. Certain host symptoms, such as aching muscles and fever, are related to the production of IFNs during infection.





    So, where do I get interferon alphas? Can I buy some at my supplement store?

    It looks like may be XMRV purposefully hinders interferon alphas so it can thrive. We have a war on our hands. But we have spies getting tactical information. Our "intelligence team" is successfully learning the XMRV battle strategies. Won't be long.


    Tina
  9. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I wish I was an immunologist. On Wikipedia, under interferons, I am seeing lots of words that I have seen before but don't have full understanding of: RNase L, immunoproteasome (well, I have seen immunoprotease), T cells.

    Oh wow, says some viruses hinder interferon signaling. Guess what.... EBV is one of them.

    If only I understood all of this, I bet it would paint all the actors clearly filling their roll to tell one story.

    I love mysteries. I love figuring out mysteries. How exciting all this is, especially to those that understand it all.

    Tina
  10. natasa778

    natasa778 Senior Member

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    Low Intereferon alpha

    I wonder if one possible explanation for low levels in blood could be high levels in brain and cerebrospinal fluid - have those been measued in CFS??

    This is odd but is the case for example with TNF-alpha in autism - very high levels in brain and CFS, but low levels in the blood. Again with interferon alpha, high levels in CFS and brain, no data (?) on blood levels.

    Anyone know enough about IFN alpha to comment? Could this be the case of molecules that are produced locally in infected tissue, and therefore not circulating in the blood? Or something like that.
  11. citybug

    citybug Senior Member

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    I hope it turns out we don't have to freak out about saliva. From many patients experience it seems like saliva isn't going to be the strongest carrier. Vomit, urine and feces would explain school outbreaks and hospitals from bathrooms, or food preparation. If stomach lining cells are rapidly reproducing and then being thrown around., liking acidic environments.., being brought up by Dr. Chia. A co-pathogen might even be a common flu.
    My trigger seemed to be amoeba histolica. Since I hadn't been traveling, doctors thought I must have gotten it from a food preparer. Once people learn about this, it's going to be like a lot of other virally induced illnesses out there. And people might be most worried about the percentage that don't know they are ill.

    I hope the part about hormones is getting out to doctors and women. Just tried more hormones before my latest big crash.

    Q: If XMRV is present but inactive, are there any suggestions as to what could be a trigger for (re)-activation?

    A: Estrogens, Androgens, Cortisol (stress) and inflammation.
  12. caledonia

    caledonia

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    So how about if the XMRV+ teachers work with XMRV+ kids? Problem solved, a new job niche created.
  13. lansbergen

    lansbergen Senior Member

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    I am not worried. We have plenty neurons. When some are damaged new networks can be made. It will take time and training. I read there are stemcells in the brain so even in the very unlikely situation we have not enough neurons left new ones could be made from the stemcells.

    Based on my own experience I think it is a matter of substances hindering the neurons doing their jobs properly and storing infomation in places that cannot be accessed fast enough at the moment it is needed.

    I learned that in my case information was not lost. When my improvement took place I noticed that more and more information was getting better available. My brain had to work very hard to perform overdue tasks. At the time I described it as cleaning and reorganise a lot of cupboards. It took a lot of time, that was frustrating but none the less I was very happy it slowly became better and better.
  14. Gerwyn

    Gerwyn Guest

    This might be interesting Natasa

    nhibition of neural and neuroendocrine activity by alpha-interferon: neuroendocrine, electrophysiological, and biochemical studies in the rat.

    Saphier D, Roerig SC, Ito C, Vlasak WR, Farrar GE, Broyles JE, Welch JE.

    Department of Pharmacology & Therapeutics, Louisiana State University Medical Center, Shreveport 71130-3932.

    Erratum in:

    * Brain Behav Immun 1994 Dec;8(4):374.

    Abstract

    In our earlier studies we have demonstrated that recombinant human interferon-alpha 2A (rHu-IFN-alpha 2A) inhibits hypothalamo-pituitary-adrenocortical (HPA) secretion f

    After Judy M,s Qand A I am looking at the interferon alphas .Does anyone mind if I post my findings on this thread.?here area number of different interferon alphas just to make life fun!
  15. Overstressed

    Overstressed Senior Member

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    This population is also including doctors in every fashion, because as I became infected, I went to a stomatologist, in an hospital. Well, this person didn't touch me at all, he looked from a distance into my mouth, and said: you need to get an HIV-test, because these symptoms have been seen with HIV+. If we are infected with XMRV, you can be sure, there are doctors, dentists, that will refuse to treat you.

    As this happened, besides the shock of maybe being HIV+ -despite having had a dozen HIV tests- I was very touched by this behaviour.

    OS.
  16. Mithriel

    Mithriel Senior Member

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    Lansbergen said

    ME is considered primarily neurological so XMRV fits well into that.

    My symptoms have always been more neurological than anything else. It started with episodes when I couldn't speak, double vision, even blindness and transient paralysis.

    I am now very neurologically challenged. I have a stair lift because I don't have enough precision of movement to get my foot onto a step. There are not many of us with such an extreme form of ME but it does happen, the same way some people have mainly food allergies. It may be that I have MS as well as ME (I have a lot of the other ME symptoms, especially PEM) but the XMRV may be responsible for both.

    Mithriel
  17. lansbergen

    lansbergen Senior Member

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    Natasa started a new thread on interferon alfa.
  18. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Hi all. From day one 20 years ago, I have been very careful when kissing or even touching anyone. I believed deep down that this was a virus. But I wonder if I had convinced myself my condition was not psychological or whether it was the result of some instinctive reaction. Did anyone else have the same experience?
  19. lansbergen

    lansbergen Senior Member

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  20. Mithriel

    Mithriel Senior Member

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    Yes, I think it happens to a lot of people.

    I have been ill so long, almost forty two years that I believe I have have lost the ability to reroute functions.

    Younger people and those who have been less affected may regain a lot of function if we get a treatment for XMRV though they may be at a disadvantage as age creeps up and the other pressures on brain function become pronounced.

    Mithriel

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