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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. S

    Human APOBEC3 proteins can inhibit XMRV

    Developing an APOBEC3 mimic could help. The other alternative is to find a drug that can activate the APOBEC3 gene(s) in those cells that don't express the gene(s). Such a drug might help prevent/treat HIV infection as well. If there are multiple varieties of the APOBEC3 gene in most people...
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    Human APOBEC3 proteins can inhibit XMRV

    APOBEC3 and an XMRV drug It seems that an anti-XMRV drug based on APOBEC3 (either a mimic or APOBEC3 stimulant) would be very effective against XMRV and low toxicity (since the cells already use it naturally). I wonder if any of the XMRV drug researchers are looking into this.
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    XMRV Buzz - Take a Deep Breath/the Big XMRV Meeting, Singh On XMRV, Sample prep?

    I have several major problems with the idea of XMRV as contamination and not a human infection. 1. What is the source of contamination? That is, what besides humans is infected with XMRV in enough abundance that it crops up in so many different labs and different procedures? If it's lab mice...
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    Article: XMRV In the Balance- A Tale of Two Conferences

    I would add several more points about contamination: For contamination: They need to identify the contaminant reservoir that is contaminating so many different labs with the same virus. This virus has not been found in ANY mouse yet. If its not coming from humans, where does it come from...
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    Retrovirus Positive CFS Patients Show Enhanced Response to Ampligen(R), an Experiment

    This study seems to add some support to the idea that XMRV may be another secondary infection of CFS similar to HHV6 and EBV rather than the primary cause of CFS. If XMRV is the primary cause of CFS the way that HIV is the primary cause of AIDs then every person that has CFS must be infected...
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    New WPI paper

    By the way, this would mean the even if the blood working group can develop an assay that can detect XMRV in the blood with 100% accuracy, it would be an insufficient test for detecting XMRV in infected individuals. XMRV quickly clearing the blood may also explain why only 70-80% of CFS...
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    New WPI paper

    Given the results of the macaque monkeys where XMRV cleared the blood within a few weeks I am not sure that a blood test will ever be sufficient to identify all infected individuals. My guess is that a complete test for XMRV will likely require a set of protocols involving multiple body fluids...
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    Dr. Cheney comments on the XMRV workshop

    On the other hand, in the above scenario, XMRV may not only be an initiator but also a sustainer of the symptoms, by continually renewing the damage to the immune system and also by increasing the production of cytokines itself after the immune system has been damaged. In this scenario...
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    Dr. Cheney comments on the XMRV workshop

    I think that CFS symptoms might be caused by a damaged immune system and not by XMRV directly for several reasons: 1) ~5% of all individuals have XMRV but only ~0.5% have CFS symptoms which means 90% of the people with an XMRV infection do not have CFS symptoms, which means XMRV by itself does...
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    Dr. Cheney comments on the XMRV workshop

    The big question in my mind is whether the macaques exhibited symptoms of CFS, or whether the monkeys appeared symptom free (like the 4-7% of healthy controls in the studies that had XMRV). That is, were the macaques in a healthy state after infection and reactivation, or were they severely...
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    From the 1st annual XMRV conference

    I found Dr Coffin's comment about HIV being one of the only known viruses to benefit from anti-retrovirals interesting. That HIV is one of the few viruses whose symptoms are related to continued replication, and that this came as a surprise to researchers. His point, that there is a good...
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    From the 1st annual XMRV conference

    One nagging concern that I have is that it is very clear that the current center of attention is XMRV and not CFS. This would be like saying that 25 years ago the center of attention was HIV and not AIDS. If HIV turned out to be just another co-infection of AIDs 25 years ago and not its cause...
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    From the 1st annual XMRV conference

    I felt the new study by Ian Lipkin was good news. My major concern is with the patient selection. It's very important that plenty of sickest patients of Dr Komaroff, Dr Peterson, Dr Bell, and Dr Klimas are used in this study. I also agree with one of the commenters that the blood and other...
  14. S

    Pre XMRV Conference: Meeting with NIH Officials & CFS Patients

    I think the point to stress to the NIH in general is that NOW is the time to fund and investigate CFS seriously regardless of its association with XMRV. If there is any doubt in anybody's mind about whether CFS is a real, and serious physical disease, just send them a link to Dr Komaroff's...
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    Potential treatments for CFS

    Assuming the MLVs are to CFS as HIV is to AIDS, the most straight forward treatments for CFS would seem to be anti-retrovirals. However, I think that CFS is much more complicated than that. For one, it seems that CFS often follows another type of infection such as EBV or herpes virus. Also...
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    Modes of transmission of XMRV - MRVs

    anciendaze Yea, those thoughts are similar to my previous ideas about transmission. Essentially I thought that CFS was caused by some virus that caused a permanent infection, and that most people were immune to the illness, which is why others I knew never got sick. I thought the illness was...
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    Modes of transmission of XMRV - MRVs

    The similarity of MLVs to HIV immediately leads one to think that they are probably transmitted similarly, ie. blood transfusions, sexual transmission from person to person, etc. However, CFS does not have the epidemiological characteristics of HIV. It seems to be fairly rare across spouses...
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    News from WPI symposium: Name change to be proposed for XMRV

    HGRV seems like a fairly accurate description of the virus family, although I prefer the shortened form HGV instead since it more closely approximates its retroviral cousin HIV. As for a better name for CFS I prefer something like the acronym HIDN (Human Immune Dysfunction and Neurological...
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    News from WPI symposium: Name change to be proposed for XMRV

    I think leaving "murine" out of the name won't have any effect on any research into how/when the virus may have first infected humans. The virus' sequence clearly indicates it derives from the murine leukemia viruses. I think it is more important that the name indicate that this is a...
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    News from WPI symposium: Name change to be proposed for XMRV

    The big news is that researchers seem to be finally getting a handle on this disease and perhaps a number of other serious diseases as well (and we can thank the WPI and the Cleveland Clinic for that) . I don't particularly care what they name the virus or the disease(s) it causes, however, I...