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Co-cure Post on Antiretrovirals and XMRV was moved

Discussion in 'XMRV Testing, Treatment and Transmission' started by Cort, Jan 9, 2011.

  1. Cort

    Cort Phoenix Rising Founder

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    Upon hearing that the WPI and Dr. Mikovits did not intend for the information on the results from antiretroviral drugs in some patients to be released we've moved the post to the admin area. This is actually the third post we've moved on this subject :rolleyes::rolleyes: - which is not surprising....Suffice it to say it was good news - lots of people heard about it - and it's not ready to be released.
     
  2. shrewsbury

    shrewsbury member

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    I'm so appreciative of your good ethics here in not broadcasting private correspondence Cort! Well done. :victory::victory::victory:
     
  3. Riley

    Riley

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    AAAAGHHH! When will all of this good news become more official?!? This is such an exciting but simultaneously frustrating time. I do think we will see the tipping point in 2011, but it's hard to wait with all of these whispers in the wings.
     
  4. Daffodil

    Daffodil Senior Member

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    the news is NOT ACCURATE! only ONE person recovered - a 16 yr old boy who had the disease for less than a year. i just heard this from someone at the WPI
     
  5. Alexia

    Alexia Senior Member

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    Cort I find great that you are careful and respect the choices of the researchers involved.
     
  6. Jemal

    Jemal Senior Member

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    I have the feeling that the longer you suffer from this disease, the harder it will be to make a recovery... I hope I am wrong though.
     
  7. Daffodil

    Daffodil Senior Member

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    they are finding that in the lab, ARV's positively affect viral load regardless of cytokine profile. cytokine elevation causes the symptoms, to me, that pretty much confirms that integrated virus will be the problem. which is the worse news.

    i was hoping the infected cells would decay over time, but does that happen with HTLV1? NO
     
  8. Jemal

    Jemal Senior Member

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    I thought all cells die and get replaced? Although some cells have a very long life (decades I think?). Do replaced cells also carry the virus?
     
  9. SpecialK82

    SpecialK82 Senior Member

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    cort - do you know if Judy is presenting this info on Jan 17th?
     
  10. lansbergen

    lansbergen Senior Member

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    Depends. If bone marrow stemcells are infected the new blood cells will be too.
     
  11. Daffodil

    Daffodil Senior Member

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    the fact is, cells with HIV are very unstable and dont last long. cells with gammaretroviruses are much more stable. i dont know how it works exactly.....but HTLV patients with disease arent usually helped with ARV's (although some are). they need to lessen proviral load!
     
  12. alex3619

    alex3619 Senior Member

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    XMRV Ethics

    Hi everyone,

    I wish to discuss ethics. This issue is going to arise again, so I would encourage everyone to join in and discuss the ethical issues, without talking about the specifics of this case, so that we all have a better understanding. I am happy for anyone to disagree with me on any point, I am not into attacking people, I just debate arguments.

    Please understand that I am happy for the thread in question to be closed if it is in the best interest of patients. Supporting the WPI is important to me. Supporting ME/CFS research in general is what I have been trying to do for eighteen years. So it is probably to our benefit to support any action the WPI requests, or is clearly in their interest but not prejudicial to the science.

    However, there are journalistic ethics here. It may or may not have been right for this information to have been released originally. I understand that, but don't want to comment further because I don't have the facts.

    If a person sends me a private communication, I try to treat that as private. I am keeping lots of things like that secret at the moment (no, don't ask!). My biggest risk is that brain fog will facilitate my saying something I shouldn't, not that I will deliberately release information that is privately sent to me. I typically consider if the information is in the public domain already before I say anything, although you should know that not everyone is happy with my position on this, and I respect their right to disagree.

    If I get a mass mailed communication, and it is further mass mailed from other information distributors, then it is public information. It doesn't matter why it was released, or if that release was ethical.

    It is not a question about whether or not it is ethical to release that information. It is a question about whether or not it is beneficial to release the information. This is about right to know versus the right to protect our medical interests.

    Please understand that revealing personal medical information about someone without their permission is always unethical, I am not debating that. I have been written up in the research literature myself, and I was given an alias as it was a case study (no, don't ask).

    Let me further clarify. If someone in any other situation has a story, and reports it, its hearsay. Its not corroborated, but it can be reported if that person volunteers the information. The other party has a right of reply, including a "no comment", or "we will reply in a few days" or whatever they choose. At that point however, the news is in the public domain.

    On the other hand, there is the public interest test. On a global scale, the world has the right to know. This is an extremely serious issue, and evidence that further world-wide understanding is important. It is however clear that any material presented has to be clearly labelled as hearsay or opinion, or an unsubstantiated claim in these cases, and not presented as fact. To me, its all an hypothesis till proven, but when I am arguing about something I treat it as a working hypothesis, and so testable.

    But then there is our medical interests. I just turned 50 and I am still waiting to start my life, because I became ill at a young age. I am massively in debt. The XMRV research is my best chance of a treatment so far, and possibly the last chance in my lifetime. It is important to me that nothing I do impedes that. More broadly speaking, it is imporant to all patients to support this research (which brings up another debate about what we are doing to support research, but that belongs elsewhere). It is even more important to support research if you believe the XMRV hypotheses are wrong. Only research can disprove it, as only research can prove it.

    Those who simply deny that the XMRV research can be right are not serving any public interests. XMRV either is or is not cause or co-cause of ME/CFS. This is an objective certainty. We need to find out which it is, this is a research imperative. Skeptical commentary from scientists is important, but it is equally important to be skeptical of the skeptics.

    Let me say that, personally, I think the XMRV research is extremely compelling, enough so that I agree with Alter in that if this virus is proven to be non-causative, we should be looking for a similar virus - but lets not give up on this one just yet, the evidence just keeps getting stronger.

    So to me it is not unethical to propagate information that is already in the public domain. It can, however, not be in our best interests to do so. That is about the collective interest of all patients in the first case, and the world in the second case. This is an issue of politics, advocacy and promoting our interests, and it is these issues that determine whether or not something should be pursued.

    In any case I completely support Cort. I have yet to see him do anything unethical or clearly wrong, and he is an asset to our community and advocacy.

    Thank you for your time and patience,
    Alex Young, aka alex3619
     
  13. currer

    currer Senior Member

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    Hi All,
    Of course I am happy with stuff being taken down if it is sensitive - that is only responsible.
    Are the details in Lucketts blog post OK to debate? After all Cort posted a link to them on XMRV buzz but I am unclear which researchers some of the information originated from.
     
  14. alex3619

    alex3619 Senior Member

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    Hi currer, thanks but for the record its the 7th, when this all started, its just taken a few days to unfold. bye, Alex
     
  15. Tia

    Tia Senior Member

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    So THIS is why I couldn't find the thread again? I've searched for days on end but now I know. And yes: the news were INCREDIBLE. <3<3<3
     
  16. mojoey

    mojoey Senior Member

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    I'm wondering if the reports on Timothy Luckett's blog basically rephrase what was posted (and removed) here. Is it the same information and if inaccurate, should we contact Timothy to discuss removing it?
     
  17. tonydewitt

    tonydewitt

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    Jemal,

    HTLV persistence in cells is due to (1) cell to cell infection and (2) immune evasion; if the infected cells could be awakened so as to be visible to the immune system, then they would then be destroyed. One way to do with is via demethylating agents (such as azacytidine ), since infected cells are methylated, which silences their viral suppressor genes. Besides making already infected cells a target for the immune system, azacytidine also causes HTLV and HIV (and probably other viruses as well) to undergo "lethal mutagenesis" (re: Dr. Louis Mansky), which means that it interferes with the viral life cycle, causing defective viruses to be produced, which ultimately causes the virus to become eradicated. Impressively, azacytidine has two-fold antiviral action, since it interferes with both cell infection and virus generation. Adding to the aforementioned awakening of suppressor genes, you can see how azacytidine would be a powerful antiviral medication. The current owner of azacytidine (Celgene) will be getting some competition from a Norwegian company (Clavis) that has developed a more effective variation of azacytidine called CP-4200. Since azacytidine is the only drug so far associated with a cure of HTLV (in a patient in Greece), we have to hope that it and drugs like it will usher in the era of epigenetics, i.e. turning on & off specific cellular genes. Otherwise, people with HTLV will continue to suffer and die.

    Best wishes.
     

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