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Antiretrovirals

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

  1. Allele

    Allele Senior Member (Voting Rights)

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    @Kerqyalz I am someone who loves to reconsider things from a radical shift in perspective.
    I appreciate that you have broached the topic, esp because there were many details of Dr M's railroading that were very suspicious to me. Same for DeFreitas.

    However, may I suggest that you reconsider your posts before posting, to avoid making blanket statements (X is wrong, Y is the ultimate truth end of story, etc) and instead provide your process and evidence in arriving at your conclusions? I also find that sharing things from one's own direct experience or inquiry is more valuable than offering subjective opinions as full-on, flat out fact, without anything to support or engage the reader in considering their validity.

    Most people will not listen to decrees of this nature, and I think it could be valuable to revisit this topic, even just speculatively, to see if there is more to glean. But as you are sure to know it remains a hot-button topic and many people have long ago come to strong conclusions about it for their own reasons--so the prospect of revisiting it may require a more refined invitation to your audience.

    If you'd like to open a dialogue about XMRV/RVs, it would be helpful to actually dialogue rather than issue proclamations that likely make the reader feel they are being talked down to or over. I understand many of us on here are writing in a non-native language, and whether that is or is not the case for you, it is always possible to provide information supporting your points of view, or at least a description of the elements that brought you to those conclusions.

    Thank you in advance for considering using a bit more diplomacy so that we can better hear what you have to say.
     
  2. YaS

    YaS Established Member (Voting Rights)

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    First of all I understand this is a thread about the use of ARVs, not the XMRV-"controversy".
    Let me just say I find it apalling how quick people are to call "debunked" without looking deeper into the matter.

    Does seriously no one here even know about the VP 62 plasmid, and that "XMRV" could simply never be detected because the template they had used to calibrate their tests was never an actual RV isolated from a patient sample but an artificial, compound clone doctored by Silverman? Of course it could not be found in vivo!

    In conclusion, all those yelling "debunked" could just as well be proud to announce their discovery that a fake Rolex is not an expensive watch.
    Well guess what: real Rolex watches do still exist and tend to even be valuable.

    Same with the family of Human Gamma Retroviruses (HGRV) Mikovits and others have discovered. Call some of them XMRV-like, if you will, since XMRV was only the fake Rolex and never the real deal.

    Now, on to the (I suppose) actual topic of this thread.

    Some here may be already aware of this recent case report of remission from Bell 0 (!) under therapy with Tenofovir:
    http://meversuscfs.blogspot.com/2017/11/time-for-truth-zuruck-im-leben-dank-hiv.html
    (english translation available)

    Just a few days ago her treatment protocol was published, too:
    http://meversuscfs.blogspot.com/2018/06/arztanfragen-mein-therapieregime-fur.html
    an english translation PDF is available, which I also attach.


    Just two more remarks on the idea of these ARV drugs' effectiveness being based on immunomodulatory or other, i.e. additional antiviral properties:

    1. it would seem immunomodulatory approaches have not proven too successfull for ME treatment in the past.
    Why then should this be the relevant mechanism here?

    2. the fact that symptoms looking like full-blown IRIS (immune reconstitution inflammatory syndrome) have been observed induced by ARV, much like in formerly untreated HIV-patients when newly starting ART should raise a big monobrow.
    These reactions may have been misunderstood and led to discontinuation of treatment in many patients in the past, when initially using lower doses of ARVs and increasing gradually might have been the way to go.

    I would further advise anyone interested to look into HIV-associated neurological disorders (HAND).
    Descriptions read A LOT like ME, among others including neurocognitive issues, pain, paralysis, neuropathies, fatigue etc.
    Not to forget the many other similarities, like dysbiosis, opportunistic infections, cancers and the like...

    Seeing the broader picture, ME does look like a rather typical retroviral illness if AIDS ever was one, not only in those 80ies brain scans and it shouldn't be too far-fetched that similar treatment approaches could thus make sense.
     

    Attached Files:

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  3. Esther12

    Esther12 Senior Member (Voting Rights)

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    Is there evidence showing that any test for XMRV (or XMRV-like) can show an association with CFS under blinded conditions?

    If there were that, would be huge and important news. When the evidence shows that none of the XMRV tests hold up and show a reliable association under blinded conditions when assessing samples collected in the same way from CFS patients and healthy control then it's fair to say the XMRV thing has been debunked.
     
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  4. Trish

    Trish Moderator Staff Member

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    Thank you for your comment @YaS.

    If you have more to say about XMRV it would, as you say, be best to do this in the XMRV thread here. I can make nothing of what is simply a series of assertions in your post. I am sure you would agree that nobody should be persuaded of a case simply by someone telling them it is so. If you want to try to persuade others, it would be more helpful to point to published scientific papers that provide the evidence.

    As to the use of retrovirals, again, I can make nothing of anecdotal evidence. I am of course pleased for the individuals whose health has improved, but a few anecdotal cases provides no better evidence than the anecdotes we can find all over the internet of the efficacy of the Lightning Process, Homeopathy, nutriceuticals or any other treatment tried by individuals. And look what happened with Rituximab - so much hope built on what seemed to be strong evidence of efficacy in the early trials, and individual stories of success, but then the large scale trial has not supported these claims.

    I wonder whether you have tried retrovirals yourself or whether, like me, you are waiting to see whether there will be a clinical trial first.
     
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  5. YaS

    YaS Established Member (Voting Rights)

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    Absence of proof is not proof of absence.

    There was never a serious research effort into the matter to clear it up, quite the opposite while there are numerous leads.

    I'd prefer this thread to concentrate on ARV use though, maybe you'd like to look at the links provided and sources cited therein.

    Just one related quote:
    "The paper should not have been fully retracted. It should have been partially retracted.
    [..]
    And this is the saddest part; we came up with a study that showed who would do well on Ampligen.

    30% of the people with ME/CFS had antibodies to spleen focus-forming virus (SFFV), and these were the patients who responded to Ampligen.What we had found was a biomarker - the antibody to SFFV-env recognized by 7C10. This finding was later validated in the Lipkin multicenter study. The assay in our original paper was replicated in every study we did, but now all of that original data is lost. If I hadn't been so thoroughly discredited, and my research destroyed, Ampligen could have been approved."
    http://www.plaguethebook.com/plague--an-interview-with-judy-mikovits.html
     
  6. TiredSam

    TiredSam Moderator Staff Member

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    @Jonathan Edwards I would be very interested in your opinion of the document attached to the bottom of @YaS's first post above(treatment protocol in English), plus the commentary in the first link of @YaS's post:

    http://meversuscfs.blogspot.com/2017/11/time-for-truth-zuruck-im-leben-dank-hiv.html
    (in English if you scroll down).

    Katherina Voss is a well know and very credible advocate in Germany whose two daughters and whole family have suffered terribly with ME (they are featured in the film "In Engen Grenzen", available to watch for free on youtube, but only in German as far as I know). I am very pleased to hear that one of her daughters has improved.
     
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  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Thanks for the question @TiredSam. I have so far looked at the document at the bottom of the first post - the treatment protocol. I find it quite distressing to see this. Giving my opinions in this forum (and before) has very often left me wondering whether I should be as frank as I am and whether I am doing any good or causing distress. But I think people want me to give my honest opinion as a scientist.

    This document is not based on science in any coherent way. Nor is it based on any clinical evidence that one should use as a basis for treating anyone else or recommending treatment of anyone else. My hope would be that no doctor would take it seriously. Unfortunately, I know that this may be overoptimistic. I would especially hope that no children are treated with this regimen because they are not in a position to give fully informed consent.
     
  8. TiredSam

    TiredSam Moderator Staff Member

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    Thanks very much. I always appreciate your frank opinions.

    ETA:

    Possibly both, but do keep at it :)
     
  9. Esther12

    Esther12 Senior Member (Voting Rights)

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    No, but when it's claimed that there is testing which shows an association between XMRV and CFS, but that testing fails to replicate under blinded conditions. then it's fair to say that the claim has been debunked.

    I think that there are some serious problems with Mikovits' work and trustworthiness, so don't have much faith in her own assessments of her work.
     
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  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I have read the second document. Again, it is distressing to see this. A mother pleading for the health of her children does not leave me untouched. My wife had five pregnancies and we only have one living child.

    But we have to stick to real science and this is not real science. The fact that several researchers have found unconfirmed evidence of various retrovirus signals in ME patients does not add up to anything. It adds up to showing that if you look hard enough you are likely to find spurious results from time to time. It is completely impossible to deduce from the improvement of a young person with ME that their improvement has anything told with the drugs they are taking. Young people with ME often improve at some point.

    It is harsh to say it but this sort of 'advocacy' can only harm the ME community. I would like to think that finally, now that there are high quality scientists taking an interest in ME that we can state plainly and build a consensus that this is not the way forward. Just as psychotherapy based on incoherent speculations is not the way forward. There is no meaningful evidence for persistent viral infection in ME of any sort at present.
     
  11. duncan

    duncan Senior Member (Voting Rights)

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    I suspect some would challenge this. Where I live in the US, pick any 10 individuals diagnosed with ME/CFS and I'd wager at least three would show evidence of persistent infection depending on the diagnostic and if tissues were tested. If I recall correctly, ME/CFS stalwarts like Bell, Chia, Peterson, just to name three off the top of my head, have speculated that a pathogen is involved in maintaining ME/CFS. You can add other names from outside typical ME/CFS communities, like Steere and other Lyme mainstays who put forth ideas that Lyme patients become ME/CFS patients, or fibro etc, but their efforts to demonstrate autoimmune components have pretty much failed.
     
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  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    And I think that sort of speculation should now be a thing of the past. Repeated studies have come up with nothing. One day something may of course turn up but the fact that people have speculated gets us nowhere. The science around ME has not been good, let's face it. I would like to see science as good as in breast cancer or inflammatory arthritis. That means a completely different level of critical appraisal. PWME deserve better stuff.
     
  13. duncan

    duncan Senior Member (Voting Rights)

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    Maybe so, @Jonathan Edwards. Or perhaps the art of diagnostics is simply not evolved enough. I cannot speak to all of the deficiencies with each pathogen, but as you know I can for one. Yet I am open to the idea of a corrupted immune system and an autoimmune disease. This is one of the reasons I am so eager for more Mark Davis stuff.

    I guess my point is, Science has not proven an unflappable ally for ANY interpretation so far.
     
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  14. Trish

    Trish Moderator Staff Member

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  15. YaS

    YaS Established Member (Voting Rights)

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    I read this claim repeatedly from you. Young people with ME according to ICC, especially when their illness has over years been progredient up to 0 on the Bell scale?
    Come on, I seriously doubt a single such case exists. To expect death at that point is more reasonable.

    In another post you seemed not to clearly distinguish ME from postviral fatigue at all. Would that describe your stance? Obviously Ramsay thought it important to make that distinction, and ME ICC isn't PVFS either.

    By the way, it would seem that doctors experienced in treating HIV were not surprised and have chosen to classify the initial reaction to the drug as IRIS, not quite "improvement" in itself.
    Any thoughts on that?

    In a day and age where there are no approved, official treatment options available and some are looking at the prospect of a long, torturous process of dying in their beds after decades of suffering, I fail to see the problem with trying out one more off-label treatment under careful medical supervision, especially when the anecdotal reports we have been receiving over the years suggest patterns and successful approaches.

    How come you don't rather see this as an incentive for actual clinical studies? Wouldn't that make more sense?

    A consensus that this is not the way forward? Count me out then.
    I'd rather give this a try accompanied by caring doctors than wait forever on whoever is considered high quality scientist at a certain time for whatever reason to have funding thrown at them.

    There are plenty of severe ME sufferers basically buried alive, I would find it ethically inacceptable to not make a treatment option available that has repeatedly shown significant results in others and on top of that actually for once takes a plausible idea of an etiology into account.

    To be clear, I have been hovering around Bell 10 for long myself and it has been getting progrediently worse over a course of at least twelve years for me now.

    I will gladly take ARV at the first opportunity and be happy to monitor and report results and hope that it may benefit science, other patients or whoever needs it.
    Frankly, I do not see anything else promising in the making at this time.
     
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  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    It does. It indicates that Ron Davies meant what he said when he said he would start from scratch and cover everything. And in common with a lot of other groups, many of whom never published, he confirmed that there is no evidence for viral persistence in ME in comparison to normal people. It is a pity that he did not put out a publication on that because we need these negative data in order to get the balance of probabilities right. But I can see it would have been a hassle and at least he presented it informally.
     
  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Yes but when people say that absence of evidence of pink unicorns that smell of orange peel is not evidence of absence I tend to go to sleep.
     
  18. Trish

    Trish Moderator Staff Member

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    @Jonathan Edwards, can you explain whether not finding viruses in blood is the end of the story, or is it possible for viruses to lurk in other tissues such as the brain or nerves and not show up in blood?
    I think Ron Davis is preparing some of his research for publication. I also remember him saying how important it is to publish negative findings.
     
  19. Mij

    Mij Senior Member (Voting Rights)

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    Totally agree with this.
     
  20. Keela Too

    Keela Too Senior Member (Voting Rights)

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    Isuggest that the fact that PEM/PENE feels like flu reactivation (combined with it’s delayed effect) could be a strong indicator that something viral like might be at play. Of course it could be an immune response to some metabolic byproduct or something. But I’m in no hurry to rule out viral or retro viral possibilities.

    Perhaps the means to detect this thing is still not well perfected?

    However I do agree, that although I regard myself as a responder to Tenofovir, in reality I am an anecdote only. But for me, that makes me a very happy (if not totally recovered) n=1.
     
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