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Antiretrovirals

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Hutan, Jun 11, 2018.

  1. Inara

    Inara Senior Member (Voting Rights)

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    Would you be willing @Kerqyalz to say more for people who have no deeper knowledge? For instance why isn't Lipkin (or others) good enough to make retrovirus research? Why did Hornig file against him? On which basis do you take ARV? (Did you do some tests?) How would one recognize a researcher that is skilked enough for retroviral research? By which criteria does one decide a paper about (retro-)viruses is correct or incorrect? You imply that the Mikovits findings were correct - why or why not?
    And how did you find doctors who describe the drugs? Are/Were you severe ME?

    Really interested and I would like to understand.

    I know another German blog where it is spoken about retrovirals. In this case, they have helped two children to recover from severe to mild ME. The reference is Mikovits. But I am so unsure, which certainly is in part due to missing information.

    At this point, for myself, I don't see a reason to try ARV. High risks, no indication.

    Edit: DeFreitas' findings seemed very interesting to me, and my impression was her research has quality. I, too, wonder what happened to her findings.
     
    Octogenarian, Susan K, merylg and 6 others like this.
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Dear @Inara,
    Your questions are reasonable. The XMRV story was one of the first things I came across when I got interested in ME. My understanding of what happened is something like this.

    When HIV was discovered there was a massive increase in interest in virology and large numbers of people were recruited to work in the field. Once the dust had settled, virologists, having found one new retrovirus, started looking around for other illnesses they might study Presumably because ME makes people feel chronically fatigued, as does AIDS, some thought it might be worth looking at.

    The problem with that is that the epidemiology of ME does not make it look like a retroviral infection at all. In the 1960s and 1970s microbiology was built up on epidemiology but by the 1990s people tended to forget the importance of epidemiology and just do the molecular biology. AIDS gets passed by needles and sex in a very predictable way. The epidemiology fits exactly with a viral infection. We know quite a lot about the epidemiology of ME and none of it fits for a particular viral infection. Whatever virus triggered the Royal Free outbreak is presumably long since dead because the outbreak never spread to the rest of the Western world.

    So when I heard that people were taking seriously the idea of a retrovirus as a cause for ME I thought it was almost certain to be a blind alley. And a large number of scientists with absolutely no political motivation to produce a wrong result, including reliable people in my own university showed that Mikovits's findings were due to contamination. Virologists love finding new viruses. I suspect all those who got involved in checking the XMRV story were intrigued to see if it would hold up. But it became clear that it was bad lab practice right from the start. Everything is published and it all makes sense.

    Dr Mikovits clearly had a passion for working on ME but she has gone on to produce communications, including a video, which indicate that she does not really understand the relevant immunology. She may have drawn a number of people into the ME field, including Ian Lipkin, but her own work is of no use to us.

    We have no reason to think that anti-retrovirals work in ME, in any cases. Without an objective measure of disease response the fact that some people feel better at the time that they are taking medicines means nothing useful. Moreover, some of these drugs are quite toxic.
     
  3. TiredSam

    TiredSam Moderator Staff Member

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    I most certainly do not. I have found great comfort in and attribute significant health improvements to a sustained attitude of grumpy cynicism.
     
  4. Kerqyalz

    Kerqyalz Established Member

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    In response to the last three messages and previous messages too, and not necessarily in any particular order I would add the following points :

    - that xmrv was a decoy exploited by multiple teams who were pushed into using it on Silverman's XMRV protocol, as opposed to Mikovits XMRV protocol. Any discussion or counterargument just does not stand.

    - as time goes on more people get better on ARVs.

    - just like I don't like being targeted or blamed, I prefer to reply to all as a group.

    My comments above are not in any order nor to any one indivudual. I know the above views posted by others are held by many.

    But they are wrong. For the very simple reason I have outlined in my posts.

    In short the ONLY individuals truly competent to do an XMRV study can be counted on one half of one hand. The discoverer of HIV. And the discoverer of HTLV. Nobody else has the skill. Proven by the fact that nobody else other than those two teams/two people have a retrovirus to their name.

    I rest my case

    Edited by moderator
     
    Last edited by a moderator: Jun 13, 2018
  5. Dr Carrot

    Dr Carrot Senior Member (Voting Rights)

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    Right-o. Not sure what you’re doing on this forum then, really. You haven’t provided any proof of any of your surprising and outlandish claims. This forum, for good or ill, tends to scrutinise aspects of research around ME very stringently. You haven’t provided anything that can stand up to that kind of scrutiny :yawn:

    - “but they are wrong” - why? There is nothing in your posts that shows this.

    - “nobody else has the skill” - imagine if we took this approach to all other illnesses. We’d just stop researching them.

    - “as time goes on more people get better on ARVs” - because some people somewhere get better using a thing and anecdotally report as such, does not scientific proof make. I can say that I recovered my cfs by patting my head three times a day. This doesn’t make it a scientifically proven treatment, and that other people can get better doing as I do.
     
  6. Kerqyalz

    Kerqyalz Established Member

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    I agree that this is not a normal situation
     
  7. Inara

    Inara Senior Member (Voting Rights)

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    Thank you @Kerqyalz.

    For me it is very difficult to understand you.

    What is the Silverman XMRV protocol, what the Mikovits XMRV protocol? Can you provide links, resources...?
    So, do I understand you correctly that people who showed there's no XMRV used the Silverman protocol and Mikovits used her protocol? Can you point to publications? But didn't Mikovits use the Silverman lab? And didn't she say herself that was contaminated?

    Can you link to that?

    So Montagnier and Gallo? Did they work on XMRV? Did they work on other retroviruses except of HIV, HTLV1,2,3,4? Did one of them say something about retroviruses in ME?
     
    adambeyoncelowe likes this.
  8. Kerqyalz

    Kerqyalz Established Member

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    Research takes courage.
    Research without courage is akin to walking away from reality.
     
    Inara likes this.
  9. Kerqyalz

    Kerqyalz Established Member

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    Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome.
    Erlwein O, et al. PLoS One. 2010.

    Authors
    Erlwein O1, Kaye S, McClure MO, Weber J, Wills G, Collier D, Wessely S, Cleare A.
    Author information
    1
    Jefferiss Research Trust Laboratories, Section of Infectious Diseases, Wright-Fleming Institute, Faculty of Medicine, Imperial College London, St Mary's Campus, Norfolk Place, London, United Kingdom.


    Funding: AC, DC and SW are partially funded by the South London and Maudsley NHS Foundation Trust/Institute of Psychiatry National Institute of Health Biomedical Resaerch Centre. The team from Imperial College is grateful for support from the NIHR Biomedical Research Centre Funding Scheme. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
    Edited by moderator
     
    Last edited by a moderator: Jun 13, 2018
    Inara likes this.
  10. lansbergen

    lansbergen Senior Member (Voting Rights)

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    I do not remember the details of the XMRV story but at the time I thought is smelled bad.

    I will not take ARV but the immune modulator I take decreases HIV infectivity in vitro.
     
    adambeyoncelowe, andypants and Inara like this.
  11. Kerqyalz

    Kerqyalz Established Member

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    What are u taking?
     
  12. Kerqyalz

    Kerqyalz Established Member

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    I think the longer people deny the existence of XMRV Mikovits, the harder it will bite them.
     
    Last edited by a moderator: Jun 13, 2018
  13. TiredSam

    TiredSam Moderator Staff Member

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    Case dismissed due to lack of evidence.
     
  14. Kerqyalz

    Kerqyalz Established Member

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  15. Inara

    Inara Senior Member (Voting Rights)

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    Okay, found here something about the lawsuit:
    http://www.sciencemag.org/news/2017...ominent-chronic-fatigue-syndrome-research-lab
    I guess many people around here already know that stuff?

    Is there an agreement here that the paper "Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome" mentioned above shouldn't be trusted? Or can it? (Please forgive if it was mentioned in the XMRV thread...I can't remember :( )

    We already had an XMRV discussion on the forum, and I found it very constructive. I found the discussion here in this thread very interesting, too. I have no deeper knowledge about the ME-retrovirus-thing - only what was discussed here on the forum - and I remain sceptical-interested. By the way, I want to thank you @Jonathan Edwards for your statement, too.

    I can imagine most people here are fed up with this topic. I wasn't yet diagnosed/ill in 2012, so I didn't experience all this. I was confused to see the German blog post with ARV treatment, having our discussion about XMRV in mind from which I took my own conclusions; I value the blogger very much. I know that person to be a thorough searcher.
    There are also others at the moment pointing to ARV treatment. I wonder: Has something happened?

    @mods: If wished, I could move this post to the XMRV thread or whatever...And please apologies to everyone who feels this is a repetition of stuff already discussed on the forum. A small hint and link would be enough.
     
  16. lansbergen

    lansbergen Senior Member (Voting Rights)

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    levamisole
     
  17. Kerqyalz

    Kerqyalz Established Member

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    Far too dangerous surely
     
  18. Esther12

    Esther12 Senior Member (Voting Rights)

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    There's good reason to be cautious about the findings of any individual study, and there were some legitimate concerns about the paper in isolation (it was the first negative CFS XMRV paper), but later research effectively debunked the claim that XMRV was associated with CFS anyway.

    When that PLoS paper came out there was still a lot of controversy and uncertainty around XMRV testing, and this was not helped by one of the researchers from the paper saying that they were 100% certain XMRV was not in those CFS samples, but also thinking that XMRV was associated with prostate cancer. That position didn't really make sense, as there was still so much uncertainty about the discordant XMRV results for CFS and prostate cancer. She later decided that actually, her positive prostate cancer results were due to problems with contamination and that there was no real association there either, which made much more sense.
     
    Last edited: Jun 13, 2018
  19. junkcrap50

    junkcrap50 Established Member (Voting Rights)

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    My CFS doctor who's an infectious disease doctor and has been treating CFS since the 90s has one patient who made a complete recovery on antiretrovirals. She was put on antiretrovirals a long time ago and made improvements, so further teaking of medications continued improvements and she made a complete recovery cure. She recently came back after many years of being cured to see the doctor because she got CFS again from a nasty viral infection or moldy house (can't remember which) and has again seen improvements restarting antiretrovirals.

    I have an appointment with my doctor later this summer and will discuss this case study and other things he's learned. So I will have more information to contribute after my appointment.

    Also, 2 more case studies of a doctor with CFS and her daughter of antiretrovirals with near complete recovery can be found documented on Dr. Jamie Deckoff-Jones's blog, http://www.x-rx.net/blog/.
     
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  20. Inara

    Inara Senior Member (Voting Rights)

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    I shall re-read the XMRV thread. I see I have forgotten so much and there is so much info there.
     

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