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Antiretrovirals

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

  1. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Are you not aware of Jessica in Unrest. She is not well but she is a lot better than she was as far as I understand. She was able to give a very good presentation at the House of Commons from a wheelchair.
    The problem is that you cannot draw any conclusions that are of any use to anyone else. Believe me, I have been in this situation of needing to find a way to develop a new treatment for a chronic disabling disease. I did not try 'off label treatment under careful medical supervision'. I set up formal trials, paid for out of my own pocket, and finally persuaded a drug company to take the treatment on. Clinicians who prescribe stuff off label without proper prospective planning or just lazy, and patients should tell them that. We need proper trials. But there is only any point in setting up a proper trial if you really believe it may work. I suspect most doctors who give out off label treatments realise that a trial would come out negative. That is why they do not do what I did.
     
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Viruses can certainly lurk but in general when they lurk they produce no symptoms.
     
  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I cannot see that it can do really. People talk of PEM after mental exertion. And we have friends who are in a bad way apparently for that reason - the exertion of advocacy. I cannot see how mental exertion is going to lead to viral reactivation in the time frame of PEM. It just doesn't fit.

    The symptom complex of flu and probably PEM is mimicked by anything that triggers various signalling systems mediated by hypothalamus and peripheral immune cells. It isn't something to do with a virus. it is something to do with a signalling response. So to me it does not suggest a virus is likely.
     
  4. YaS

    YaS Established Member (Voting Rights)

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    As a model, this might be interesting:

    "To examine the infection potential, kinetics, and tissue distribution of XMRV in an animal model, we inoculated five macaques with XMRV intravenously. XMRV established a persistent, chronic disseminated infection, with low transient viremia and provirus in blood lymphocytes during acute infection. Although undetectable in blood after about a month, XMRV viremia was reactivated at 9 months, confirming the chronicity of the infection."

    https://www.ncbi.nlm.nih.gov/pubmed/21325416
     
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  5. Mij

    Mij Senior Member (Voting Rights)

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    @Keela Too . . . we can't say that PEM/PENE feels like flu reactivation for everyone with M.E. It does not feel that way for me.
     
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  6. Keela Too

    Keela Too Senior Member (Voting Rights)

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    Okay. @Jonathan Edwards I know, when I don’t know enough. :thumbsdown:

    I totally agree regarding the mental exertion however. Social gatherings are particularly difficult for me, I think it’s the multi-tasking of; listening, thinking, formulating responses, and replying. Fries me quite quickly even now.
     
  7. Keela Too

    Keela Too Senior Member (Voting Rights)

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    Interesting. And actually even for me the nature of PEM/PENE has subtly changed over time. It will be interesting once we understand all this better.
     
  8. Esther12

    Esther12 Senior Member (Voting Rights)

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    Also, even if those with CFS aren't more likely to suffer from various persistent infections, the fact so many people's symptoms seem to start with an infection could indicate that some people have abnormal reactions to the sorts of common infections many people have lurking around. There's just so much we don't know that it's worth being cautious, particularly when it comes to making treatment recommendations for children.
     
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  9. duncan

    duncan Senior Member (Voting Rights)

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    I don't look at PEM from mental exertion as viral reactivation. It is a symptom, albeit a cardinal one, of everyday ME/CFS that I have to be wary of and factor in. That is immaterial to whether ME/CFS proves to be persistent infection or autoimmune.

    I am one of those who suffers from mental PEM, and it is just another symptom of an ongoing disease; it for me does not suggest reactivation of a latent or silent disease.
     
  10. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think that was my point.
     
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  11. duncan

    duncan Senior Member (Voting Rights)

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    ? Oh! I see the context now.

    This is why I should never post with my brain fried...
     
  12. Inara

    Inara Senior Member (Voting Rights)

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    I didn't understand it this way. What I understood: XMRV is not associated with ME/CFS. My impression was these findings were clear. But there were retroviruses found by Lipkin (Montoya) and Mikovits (to my knowledge). Lipkin obviously mentioned this on the press conference about the multicenter study, but said he cannot tell whether this has relevance. This should have been followed.

    To be honest, I find arguments against and some arguments for the retrovirus theory plausible.

    I am happy for everyone who improves, and who improves on ARV. I am so happy for this helpful discussion. I just don't want to experiment with it. If I were very severe I probably would. But I want to keep an eye on the topic because I think there are unanswered important questions.
     
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  13. Inara

    Inara Senior Member (Voting Rights)

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    I have to agree to this. It seems like chaos. Actually that was something a neurologist said to me, and I simply couldn't disagree. His fault was to assume the illness isn't real then.
     
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  14. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    There was nothing in this result that suggested it should have been followed. Viruses were not found in ME cases any more than normals.
     
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  15. Keela Too

    Keela Too Senior Member (Voting Rights)

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    I tend to agree. I think there could be more yet to explore.

    However, I am wary of trying another ARV, despite my interpretation that it was the ARV that helped me in early 2016, to get back a better quality of life. I’m in a comparatively good place now - even if considerably less healthy than prior to all this ME malarkey. Yet no drugs are without risk, or without side effects. I don’t want to risk what I have now.

    I wish we all knew more.
     
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  16. chrisb

    chrisb Senior Member (Voting Rights)

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    I think there is a possible problem here. I had a clear viral onset diagnosed by a GP and consultant physician, as glandular fever and then atypical glandular fever, but although tests were run for likely culprits, none was discovered.

    If the causative virus is not picked up by testing there would be no difference shown in comparison to "normals"
     
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  17. Allele

    Allele Senior Member (Voting Rights)

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    But in ME there is nearly always symptomatic presentation. This is the disconnect I see between theory/existing medical science and clinical practice. A huge percentage of ME patients have multiple herpesfamily virus reactivation, (among other viruses) with persistent clinical signs of virus. I don't understand the dismissal of known opportunistic pathogens in people who have chronic immune disease. Whether causal or downstream, they are problematic in sick people, and worth looking into as a treatment pathway, imo. Just bc healthies can have these viruses without incident does not mean it is wise for a clearly sick person to ignore them.

    Not to mention the various cancers that are associated with these viruses. Why are those viruses not taken seriously in
    in an immunocompromised person? It's absurd.

    I'm on Valcyte now and feel better in many ways. If I could try ARVs I'd be sorely tempted, medical "evidence" be damned--but I have very little left to lose at this point, so that's just me.
     
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  18. YaS

    YaS Established Member (Voting Rights)

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    Not to forget how chronic EBV reactivation is a known typical issue among others with HIV and immunodeficiency...
     
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  19. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  20. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I don't think that your experience is strictly relevant @chrisb. Testing for evidence of recent infection in routine practice has lots of practical limitations because you have to look for a rapidly rising titre of antibody response or culture or DNA from viruses common enough for routine labs to test for. The research studies done on ME populations have compared levels of antibodies and evidence from culture or DNA in a more exhaustive way and because you are comparing two populations rather than two time points in an individual you can get information you cannot get from an individual.

    There is also the point that nobody doubts that viral infections occur at the time of onset of ME. The issue is whether or not there is evidence for ongoing active infection of a sort that might produce symptoms. Several studies have now found nothing.
     

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