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Should NIH Do An Antiretroviral Trial For ME/CFS With Raltegravir And Tenofovir??

Discussion in 'General ME/CFS Discussion' started by Knockknock, Mar 13, 2017.

  1. Knockknock

    Knockknock

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    !! I will say yes!!!
    Retroviruses have hunted Me/Cfs since the very early days of ME/CfS.
    Dr Defreitas Retrovirus(CAV) was totally ignored by the NIH, despite tha she strongly warned the danger of the RT she found in her CFS patients, capable of infect T cells, B cells, Mitchocondria...
    Xmrv was dismissed do to contaminationof the assay, nothing else was done after that, no further explanation, no new methods of testing, the assay was never corrected and aveilable for further testing.

    Most Doctors like Montoya, Klimas, keep blood from their patients Frozen until the new none contaminanted assay was made aveilable, this never happen, The NIH took the results for granted leaving us with so many Unanswered Questions.

    But despite all this:

    Retroviruses are suspected in others auto&neuro immune illnesses.
    MS did a retroviral trial, ALS have a trial going on right now for (HERV).
    Either HERV or another unknow retrovirus, many people with ME have achieved great success with this two HIV/AIDS DRUGS RALTEGRAVIR AND TENAFOVIR.
    Also late studies have suggested this drugs in particular raltegravir may have great potency inhibing replication of most herpes viruses, so often linked to ME/CFS.
     
    Last edited: Mar 14, 2017
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  2. Knockknock

    Knockknock

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    0 comment?????
    Is this a tabu??
    Are people afraid to talk about this??
    or just not interested?????
     
  3. trishrhymes

    trishrhymes Senior Member

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    Is there a published study on this, or is it people you know or have read about?

    I don't know why your thread has had no response. In my case, I'm interested enough to have followed the thread, but too ignorant on the subject to have anything useful to say.
     
    Last edited: Mar 16, 2017
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  4. Knockknock

    Knockknock

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    Im glad you say that.
    I think this always have been a tabu here at PR, when the threadt of " Anyone using HI/AIDS medications" started i think it happen very similar, people were holding back from commemting on it,
    I remember some one made a very similar statement' if it was a tabu to talk about that"
    There is no published studie exactly on it.
    But as most of us know Retrovirus it has always been suspected as the etiology of me/cfs, but not just Me also Ms, Als,, exmple HTLV-1 TSP/HAM is a neurodegenerative disease, very much similar to a progressive ( MS) , Tsp/ham is know confirm published to be caused by (HTLV-1 Retrovirus,
    Dr Defreitas found Htlv retroviral crossreactive sequency in her CFS patients .
    Look there is study was published but was ignored by both" Science & NIH.

    http://www.ncf-net.org/forum/revelations.html

    Guys this exactly describe our illness 99.9%..this retrovirus will fit the criterian of what happen to our illness, it actually explain many things.
    Both Defreitas-Cheney were two bright Doctors researchers they has scientistic proof" THIS IS NOT THE CASE OF MIKOVITS AND THE CONTAMINATED TEST, THERE WAS DIFERENT METHODS USED TO PROOF A RETROVIRUS WAS BIHIND THE ILLNESS" this is no theory or conspirancy therory, this was real in black and white, the NIH did to them thesame they have been doing to us "" IGNORING THE FACTS"""facts that are STRONG FACTS,STRONG EVIDENCE OF A REAL CRONIC DISABLING AND IN MANY CASES EVEN DEADLY DISEASE!!!

    IGNORING A RETROVIRUS AS CAUSATIVE PATHOGEN"
    "WAKE UP"""
    DR Mikovits & Ruscetti XMRV, Also End up in Conspirancy under Misterious Circunstances...
    after been found in many diferent ways, by diferent methods in CFS patients, prostate cancer Etc... way before Mikovits!!
    The Gov just retracted becouse of the contamination theory," THAT IS NOT ENOUGH" simply not enough, they give us no fuerther explanation, never made aveilable a none contaminated Assay.
    First they should of done a much larger indeep study, not just a couple hundred patients, they should of use diferent methods, when the conspirancy started, the critisism to the study come out , they should of duplicate the studie but in a much larger Study!!!
    How come Ruscetti( Top virology retrovirus hunter, novel price for the discover of HTLV-1 retrovirus) Dr Defreitas, Dr Mikovits, Dr cheney, ( lipking found 80% of Montoyas patients Positive at first them later Retracted his findings)+ many more have found evidence if retroviral involvement in ME/CFS.

    How come so many bright scientist could be WRONG???
    What's Going oN????
    For all this reasons also adding the new theory of ( HERV) as posible involvement in others Neuro immune illnesess and the fact that many Me/cfs suffers have got great benefic from raltegravir and tenafovir they should seriously look in to it.
    Some me/cfs suffers here on PR as well as in another forums health Rising and others have posted their amazing recovery on this two Hiv drugs.
     
    Last edited: Mar 16, 2017
  5. RogerBlack

    RogerBlack Senior Member

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    The paper was not 'just' retracted without lots of research.
    Deep investigation into the topic happened, which resulted in it being discovered that it was contamination between cells grown in the lab infected with two different mouse viruses.
    The precise viruses have been found, and the point where they became genetically one virus.

    The viruses allegedly found in patients are _much_ too close to be 'real' - viruses in the wild mutate _rapidly_. The viruses found were not significantly mutated between alleged patient samples.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3278917/

    They found two mouse virus sequences isolated from lab specimens combined together in a very particular way in cells grown in the lab made XMRV. The samples from patients contained near-identical sequences to this.

    An analogy is chinese whispers. If you have one person whisper something to the next five hundred times, you get an expected error rate at the far side.
    If instead you get very little error, (in this case, the samples are near identical) - you need to consider the likelyhood that it's not a real result, but that the last person in the chain directly heard the first.

    For a real infection circulating in the community, it would be undergoing massive mutations - as all viruses do. You can track easily changes between patients.
     
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  6. Knockknock

    Knockknock

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    About Dr de Freitas Cav, retrovirus???
    What do you say about that one???
    That was not contaminated? No cell lines?
    It was not just mikovits? Way before XMRV was found in prostate cancer.
    The presentation itself its suggective of a Retrovirus.
    Involved immune deficiency and dusfuntion, DNA changes, Nk cell disfuntion all this equal= low immunity, me/cfs suffers share lot of simililarities with other Retroviral infections,AIDS,HTLV..
    My question is how can we trust the Very owned people that have IGNORED MISSLEAD ME/CFS despite the hard evidences presented for decades of severity on CFIDS, Me/cfs.
    How???
    When you see the actitud tourch scientists and researchers that have try to prove then retroviral involvement in ME, its thesama as the one they have used for decades tourch our illness.
    Using none sense arguments of been a phsycological illness!!!
    Look 2 years after they said will commit to me/cfs with all their fire power, they still have done very little.
    They when from 5 million funding to 15 millions, they only fund what they want( ofcourse nothing that has to do with infectious disease)
    " ITS TIME FOR THEM TO REALLY STEP UP AND PUT A TEAM OF VIROLOGIST TO LOOK FOR THE PATHOGEN CAUSING THIS HORRIBLE ILLNESS!!
     
  7. sphynx on roundabouts

    sphynx on roundabouts

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    Don't know if this excerpt is of interest:

    Expert Answers on Chronic Fatigue Syndrome
    By The New York Times, November 24, 2009 10:33 AM

    Dr. Klimas responds:
    Elaine DeFreitas’s work and that of Dr. Michael Holmes of New Zealand both involved scanning electron micrographs of viruses. Their findings look a great deal like those that were published in the recent Science article by Dr. Lombardi and colleagues, which Ms. Grady wrote about in The Times,) that found a possible link between chronic fatigue syndrome and the XMRV retrovirus. Could they be looking at the same virus? I don’t really know, because I am not a laboratory virologist. But it makes good sense to me.

    I remember in the early 1990s a member of our laboratory, Dr. Roberto Patarca, found evidence of production of an enzyme called reverse transcriptase in our cell cultures, more evidence of an active retroviral infection. So the key thing now is for another reputable lab to find the same thing in chronic fatigue syndrome. Then we will see what happens next.
    https://consults.blogs.nytimes.com/2009/11/24/expert-answers-on-chronic-fatigue-syndrome/
     
  8. RogerBlack

    RogerBlack Senior Member

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    But there has been research that looked for retrovirus.
    https://www.ncbi.nlm.nih.gov/pubmed/23408682 - for example, looking at possible reactivation of human endogenous retroviruses and herpes.

    The XMRV retrovirus detection has unfortunately been wholely and comprehensively explained by further work. It was not a real virus circulating in any whole human.

    The fact that something shares symptoms with other conditions doesn't mean that it's caused by a similar agent.
     
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  9. RogerBlack

    RogerBlack Senior Member

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    Unfortunately not, otherwise as a history of science blind alleys.

    In 2009, XMRV seemed to be a reasonable avenue to explore, though various groups were contradicting those who found nothing in samples isolated.
    Lombardi et al - cited in the above, for example got a massive publication in Science about CFS/XMRV, which was later retracted due to the unfortunate fact that it couldn't be replicated and the results they got were wholly explained by contamination.

    This was done by several methods - different people reexamining the same samples, going to the same patients and drawing new blood as well as - most tellingly - getting the original lab to repeat the tests - finding no correlation between what they first found.
     
  10. Knockknock

    Knockknock

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    About Dr Degreitas Retrovirus??
    In my opinion its more than a coinsidnce, its to many conspirancy theories, its to many symtoms and immune disfuntions consistan with Retroviral infection, Nih have never been foward truthfull about our illness.
    If its Xmrv or not Xmrv, i cant not argue that.
    But i what i can argue is that CFS is a real illness from the very first case, not just klimas or montoya or cheney or Dr Defreitas, or Dr mazlen... many Doctors and scientists have presented enough evidence of how real this disease is and the Nih igonored all thise facts for decades, they igonred like they igonred Dr Dfreitas retrovirus, how come you guys igonre this.
    They keep treating it as a phsycological
     
  11. Knockknock

    Knockknock

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    !!! BUT OFCOURSE!!!!!
    People keep in telling me that there has been extensive proof that there was not XMRV or any other retrovirus on ME/CFS patients, that is not true!!
    ABSOLUTELY NOT TRUE!!!!
    There has been tons of doctors and researchers that have found in many diferent ways retroviral sequence on ME/CFS, by culture, by reverse transcriptance enzeme, by elisa, by electron mycograph, many diferent ways.
    The NIH have igonred or gone out of their way to proof that doesnt exist!!
    Many other doctors have put 2+2 together and have said the presentation of the illness itself its RETROVIRAL, we see it every day in AIDS, HTLV...
    What amaze me the most is none of this this Doctors and researchers that have found this evidence are consider""Scientistis proof""" so what they are??? Not all of this are conspiramcy theories!!!!
    Who have the scientistic proof???? What science are we talking about??? The one from NIH?? Really thats the one we gona belive?? Same NIH that have proof for 5 decades of one if the most cronic illness in the world and have treated us like a bunch of crazy mentaly unstable people??? Are we talking about this science?? Thesame NIH??
    Plsssss....
    So this why i belive that NIH should do a large trial on nucleotide inhibitors and reverse transcriptance Hiv/aids medications like raltegravir and tenaforvir.
    They should retake the retroviral etiology and do """ a real study"" indeep study involved 500 patients( well verified patients""""
    Or even more, test all montoyas patients for reverse transcriptance , with microelectron, with culture, retro isolation...
    Thats what they should do.
    Why not?? They are doing it for ALS.
    But not 50 patients carefully selected by them.
     
  12. RogerBlack

    RogerBlack Senior Member

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    Nobody here believes that the psychological component is not secondary.
    Just because something is found in one study does not mean that it's real - however much we'd like it to be.
     
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  13. joshualevy

    joshualevy Senior Member

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    In order to run a anti-retrovirus clinical trial, you need to do one of two things:
    1. Have a company with a money making plan, and enough money to fund the research, or:
    2. Have enough information to have a research interest in giving anti-retrovirus drugs to people with ME/CFS. At a minimum, you need to know that the people with ME/CFS have a retrovirus.

    Since there are no companies with funding around any more. At a minimum, someone needs to find that ME/CFS patients have retroviruses, at least at the 80/80 level, probably higher. The 80/80 level is a "rule of thumb" it states that something which causes a disease will be found in more than 80% of the people with the disease, and that more than 80% of the people without the disease will also lack the "cause". In fact, in real life, the numbers are usually much higher. If you test people with chickenpox, for the chickenpox virus, over 95% will be possitive. If you test people without the disease, more than 95% will no have the virus. You've got to do these kinds of studies before you give someone a drug (especially something with well known side effects like an anti-retroviral).

    No virus or retrovirus has ever come close to these detection / non-detection levels in ME/CFS.

    Dr. de Freitas's research never led anywhere, and never got anywhere near the 80/80 rule of thumb for large (or even medium sized) samples. Indeed, her research path reinforces the idea that ME/CFS is not caused by a retrovirus. Her one study was well below the 80/80 line, and followup research by others could not replicate it. She, herself was never able to replicate her own first study. When the researcher who did the first study, can not even replicate her own results (in a larger sample size), then you know the first study was wrong.

    It's important to remember that most research does not lead anywhere. It fails. Therefore, having one study have a small good result, but the follow on studies all fail, and the original researcher not be able to duplicate their own work, this is a very common failure scenario. I would even call it a "normal failure".
     
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  14. Knockknock

    Knockknock

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    She didnt replicated her study?
    She never duplicated her owne work??
    Her study demostrated infact Me/cfs is not caused by a retrovirus???
    I love you guys statements!!!
    How her research path reinforce the idea of me/cfs not caused by a retrovirus??? How
    When she presented in her study either smal or whatever size it was,her study has incripted retrovirus all over, NIH ignored this? How she is going to replicate her study? If she had a misterious accident that left her disable???
    With what evidence you can say her study point to me/cfs not been cause byba retrovirus???
    The retrovirus she describe found on her study can infect B and T cell, we see both on me/cfs, she said it can be far more troubeling since her retrovirus can get into the mitchocondia, this is a mayor in me/cfs, she found crossreacfive sequency of htlv infection, we all know htlv is causative of TSP/HAM , neurodegenerstive disease of the brain and central nervous system, me/cfs is neuro disease to, inflamstion of central nervous system, in htlv there is bladder problems inME TO cardiovascular problems IN ME TO, OXIDATIVE STRESS IN ME TO, muscle sortness and spasm In ME TO, neuropathy ME TO,
    I mean expain me how Dr Defreitas study points that way??
    Becouse what i see in Dr Defreitas everything to point to a Retrovirus that base on her findings FIT PERFECTLY and COUPE With many of the symptoms and disfuntions we on me/cfs... i also swe a conspirancy an NIH -ignoring her findings, ignoring her study thesame way the have ignored us( cronicaly ill sick me/cfs suffers for decades knowing ther truth .
     
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  15. JES

    JES Senior Member

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    Regarding duplication/validation, From MEpedia:

    1990, a summary of an edition of CFIDS Chronicle stated "This Chronicle issue reported on research linking CFS to a human retrovirus called HTLV-2 by Dr. Elaine DeFreitas based on patient samples provided by Dr. David Bell and Dr. Paul Cheney. 23 of 30 samples from CFS patients tested positive for genes resembling HTLV-2, while none of the samples from 20 healthy subjects were positive. There was heavy media coverage of these early stage results by USA Today, Newsweek, the New York Times and other major dailies and broadcast networks. Later studies testing this association, including blinded case-control studies, found positives in equal percentages among cases and controls and the initial discovery was never validated.".[4]
     
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  16. RogerBlack

    RogerBlack Senior Member

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    I note that heavy media coverage of something is in general almost entirely unrelated to it's being meaningful or not.
    The media are utterly terrible at picking what to report on and may often be more influenced by the PR release by the university than any understanding of the actual science.

    Heavy media coverage of an study that is later 'ignored' by the scientific community often doesn't mean that it was ignored, but that it was not given the same weight by the scientific community as the media.
    This is often for good reason, especially as 'study failed to replicate' is never, ever picked up by the original sources and given the same splash.

    Science reporters generally know nothing about the science they are reporting. At best they may have a science background, but they probably do not. They are often more interested in a good story that gets lots of clicks than researching the qualities of studies being reported on.

    Heavy media coverage followed by the research being 'ignored' or the paper retracted seems very often to generate a core of people believing in a conspiracy, where none exists.
     
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  17. Knockknock

    Knockknock

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    Real science in ME/CFS have been DENIED, OBSTRUCTED, OBSCURED, MISSLEAD,LIMITED, COTROLED,MANIPULATED... """ JUST THE FACT ME/CFS HAVE BEEN TREATED BY THE NIH, THE GOVERMENT FOR DECADES AS A PHSYCOLOGICAL DISEASE LIKE BUNCH O CRAZY PEOPLE, IS THE MOST VIBRANT PROOF THAT SCIENCE" REAL QUIALITY SCIENCE HAVE NOT BEEN THERE FOR US!!!!!
    IF THE GOV HAVE COVER UP MISSLEAD THE FACTS FOR 50 YEARS, THEY DO THESANE WHEN IT COME TO SCIENCE!!
    OTHER WISE THEY WOULD OF NOT BEEN ABLE TO MAINTAINED THE FACTS UNDER THE RUG!!!
    ""A PERSON NEED TO BE BLIND, DEAF AND ALMOST DEAD TO NOT SEE THAT ME/CFS IS A REAL CRONIC DISABLING SUFFERING DISEASE!!!
    CONSPIRANCY THEORIES, SMALL STUDIES, SEEM TO BE MORE CREDIBLE AND REAL THAN ANYTHING COMING FROM THE GOV AND THE SCIENCE THEY PROMOTE!!!!
     
  18. Valentijn

    Valentijn The Diabolic Logic

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    The NIH and CDC being wrong about many things does not mean that the cause is a retrovirus. Very respected researchers who continue to advocate for good biomedical ME/CFS research were among those who demonstrated XMRV is not a factor.

    They are still digging to find the cause of ME/CFS, which is how science is done. You do not start by presuming a cause and ranting against everyone who disagrees. Instead we must go where the evidence leads.
     
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  19. Knockknock

    Knockknock

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    Im not Ranting at anyone,
    Im just expresing my believes.
    Im not saying either its XMRV.
    Im asking some to explained me were it goes all the evidences of retroviral and reverse transcriptance found in Cfs patients by diferent Doctors and researchers in diferent ways??? By diferent methods.
    Im talking about the bad science that have sorround Me/cfs. For years thanks to our goverments.
    Being wrong about many things is one thing, when a person or an institution make a mistake about something that is being wrong!!
    But the NIH, CDC had 5 decades and tons of evidence to correct their mistake of been wrong and they never did, they retract and question everyones findings on the illness, but they keep treating and clasifiying me/ cfs as phsycological despite the overwelming evidence of immune disfuntion, Mri showimg brain damge, tons of real evidence clear evidence of how cronic this illness is.
    Im so amazed to see how you guys challenge people like me when speak out the thruth and you always minimize like that ""they been wrong!!
    No they have not been wrong!!
    4-5 decades of been wrong is jot been wong, mean while many of me/cfs suffers have suffer deeply!! Many have comitted suicide, many have die..
    thats not been wrong and everything with them is sorrounded by conspirancy theories!!
    Why there is no conspirancy theiries about Other illnesess.
    Why they dont ignore Ms or other illnesess??
    Why. Even now that they have accepted the illness there still such a poor funding $12-$15 millions is not gona do it.
    50 patients intramural study is a very very small studie we know that, if it was another researcher doing it , they probably wont even considered valid becouse of being to small!!!!!
    Come on facts are out there, even now ther position have change they have in their hand one of the most desabling illness on earth neglected maliciously for 40-50 years to do so little now, they have no sense of urgency for us.
     
    Last edited: Mar 17, 2017
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  20. duncan

    duncan Senior Member

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    It isn't likely the NIH will do a treatment trial before formally proclaiming a pathology for ME/CFS.

    I for one would like to see them do so, if only because we have all heard that some of our community seem to have realized good results. That's anecdotal, though.

    I'm with @Knockknock in that where there's smoke, sometimes there is fire. I have seen health agencies lie before, too, so I know how it feels to be forced to distinguish fact from fiction, like readers of pravda 30 years ago.
     
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