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XMRV results

Discussion in 'XMRV Testing, Treatment and Transmission' started by Patient 2, Dec 1, 2009.

  1. kurt

    kurt Senior Member

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    WPI definitely found SOMETHING. The negative testing of replication studies does not necessarily mean we will all be 'let down'. We may have to weather some storms until the full story is revealed. Very few initial discoveries like this turn out to be 100% correct. The intelligence of other labs and researchers will produce a more clear picture eventually.

    I know multiple labs are NOT finding XMRV in ordinary CFS samples. But I also know that there are many possibilities about why they can not find XMRV.

    If you do not want to be let down, then might I suggest not getting 'wrapped up' in the XMRV ideas being put forward by WPI right now. I know they want to help but they really did present their early finding as if it were a mature scientific conclusion and IT IS NOT. I have no idea why WPI is not being more cautious in their statements, perhaps there are business reasons, but regardless, after studying this issue and discussing with experts I do think WPI is on the right track, their May presentation was a bombshell probably bigger than XMRV. I don't know why nobody is picking up on that. There is no question that the mystery of CFS is starting to unravel. Please do not give up. Think of this as a year-long TV series with many up and down moments, and the final culpret not being revealed until the season-ender episode. Literally I believe we will not have a final conclusion about XMRV for a full year, until multiple replication studies have reached some consensus.

    I know for a fact that researchers at this time area already heading new directions because of the Science article and as a result expect there will in time be even more new discoveries. So we all need to stay tuned.
     
  2. Cloud

    Cloud Guest

    May I ask which natural anti-retrovirals he feels is best for xmrv?

    Thanks Sushi

    Ross
     
  3. Cloud

    Cloud Guest

    The question is not rude at all. Having been to the the abyss with the very worst ME/CFS could throw at me, I completely understand hoping to finally have found the cause, even if it is a potentially deadly retrovirus. Having fought for 16 years against a soul robbing disease and a society and government that have abandoned us in the worst way, yes....I understand wanting a positive result to finally put an end to this nightmare. But, I also understand hoping for negative result.....although to me personally, that's not case. The relief of finally knowing, with a promise of treatment for this awful disease on the horizon, far far outweighs my fear of a sinister cancer causing retrovirus.

    I thought there were very few people who still believed ME/CFS to have one single cause anyhow. We all know there can be many triggers....but, there may also be many causes. Maybe xmrv is causing mine, but maybe chemical exposure caused yours. Genetics don't explain everything either. Bottom line......it's not an either/or type thing with xmrv....so why fear, or welcome it. It does provide a target for those infected, and it has opened the biggest doors ever for further research for all the rest. It's all good stuff.
     
  4. rebecca1995

    rebecca1995 Apple, anyone?

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    Kurt wrote:

    I disagree with this assessment. In the Science article the authors noted a very strong association between XMRV and CFS, backed up by data. They did NOT suggest XMRV is the cause. In some media articles, Dr. Mikovits and others offered their OPINION that XMRV is causal rather than a passenger virus, which they have the right to do.

    Many very smart people agree with them. Dr. Cheney said in his newsletter she is right to consider causality with the kinds of numbers shes getting. Dr. Bell said in HIS newsletter that he believes it will be shown to be causal. Klimas, Enlander, Racaniello, Coffin and others are very excited about this research. The 75 virologists who attended the Cleveland Clinic conference in November are excited about this research.

    Note that we have yet to see a shred of data from those claiming they cant replicate the WPI findings. Assuming their studies pass the peer-review process and are published in reputable journals, THEN we can assess the claims of Cooperative Diagnostics and other groups. Until then these reports are merely rumors.

    The only report weve seen that contains actual data--admittedly unpublished--is POSITIVE. Cleveland Clinic and NCI found 13/15 patients positive by co-culture and 57% positive by viral transimission in plasma, as Peterson reported at CFSAC.

    Earlier Kurt wrote:

    Even if the WPI antibody studies turn out to be completely bogus--which I doubt--antibodies are basically irrelevant to the original cohort of 101. 68 were positive by PCR, according to the Science paper; 30 had transmissable virus in plasma, according to the data Peterson presented at CFSAC. 68 + 30 = 98 (97% positive rate).

    As far as Im concerned there are two questions:

    1. How big is the subset of CFS that has XMRV?

    2. Is XMRV causal for that subset?

    When other labs report finding XMRV in CFS--perhaps in a smaller subset than was found by WPI--Reeves, Wessly, White and their cronies will do everything in their power to undermine the findings.

    I understand the impulse on this site to temper peoples expectations, and to console those who have already tested negative. But I dont know that we need to spend so much time in our community downplaying XMRV and thus making Reeves arguments for him.
     
  5. Marylib

    Marylib Senior Member

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    WPI's actions regarding XMRV

    Have just been watching the new Nancy Klimas lecture posted on the other site -- sorry my brain can't remember Dan's last name -- and Nancy lauds the WPI study very highly! Also lauds Annette and Harvey Whittemore's actions very highly.
     
  6. kurt

    kurt Senior Member

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    Yes, that is a lot of opinion, a lot of belief, about a single study. I think you have actually helped confirm the point I was making, that there is a serious lack of caution in the reporting of the XMRV finding at this time. All these positive beliefs and opinions by credible people, without multiple independent confirmation studies being reported, is giving PWC the idea that the case is closed, this is a done deal, a mature science. And that is sadly just not true. Opinions and excitement are not data.

    It is that lack of caution that will cause many PWC to be disappointed if the WPI study turns out to be flawed. Don't shoot the messenger, the replication studies are simply honest attempts to find the truth, basic science.

    You are setting a high standard for replication studies. What standard are you using to judge the WPI claims, or the beliefs and statements of those scientists you mentioned?

    Incidentally, the Berlin study results are already announced, they did not find XMRV and while that is not a peer-reviewed publication, I do not automatically assume they are wrong, that would imply that I already know for a fact that WPI was right, but I do not and neither does anyone else at this time.

    The only way you can add those two numbers together is if the 30 who had transmissible virus were negative by PCR. But all that means is that the 30 who were PCR negative are positive for MuLV antibodies, because how else could they tell that the virus was transmitting in samples negative on PCR? (I am making an assumption about how they measured transmission, correct me if I am wrong). I do not have much hope for the WPI antibody findings. MuLV antibodies are known to cross-react with several other species, including some found in PWC. The WPI use of statistics is a bit awkward, usually researchers do not blend that type of data from two different tests and call it positive. Particularly as 30 actually tested negative on PCR.

    Good questions. This will be answered in the replication studies.

    So you equate challenging a scientific finding with making Reeves' arguments? There is absolutely no connection between the two. I personally would LOVE for WPI to be correct and for XMRV to be the cause of my ME/CFS (and that of my daughter, who also has ME/CFS). But I am not about to have the wool pulled over my eyes (yet again, and again).

    PWC have been taken down many false roads before, and are fragile and therefore I believe it is essential that people remain objective. No single study proves anything, and no single replication study will be proof either. Multiple independent confirmations are required to make claims and consider the XMRV finding a mature science.

    Long experience with many claimed breakthroughs shows the wisdom in tempering people's expectations. If I remember my basic research statistic class correctly, we will need to see at least seven solid studies before there will be any statistically valid early consensus. Ideally there should be 50-100 studies, but that is clearly improbable given the state of CFS research funding.
     
  7. fresh_eyes

    fresh_eyes happy to be here

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    One hopes that this is always the case. In the past, the honesty of the attempts has been questionable at times - which is why it seems important to keep all this in the public eye.
     
  8. FernRhizome

    FernRhizome Senior Member

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    vitamin D

    Does anyone know why Vitamin D is being suggested for XMRV treatment? I've taken Vitamin D before and it relapses me. I know Dr. Cheney considers Vit. D3 toxic in CFS. So it would be odd if it were actually an XMRV treatment supplement. Would love to hear more on this topic. ~FernRhizome
     
  9. Jimk

    Jimk

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    Vitamin D

    I'm not sure why it is being specifically suggested for XMVR, except that it has huge anti-infective properties for many of the related bacterial and viral co-infections that probably are culprits along with XMRV. See http://www.medscape.com/viewarticle/707434 I can't find anything that suggests it has antiretroviral effects, although it has been suggested as important in those with HIV undergoing antiretroviral therapy.

    I've read some of the reports on Cheney's opinion that it's bad for CFS (eg. http://cherylspeaksout.blogspot.com/2009/06/paul-cheney-talk-on-mecfs-updated.html). This seems to be connected to his redox theory in ways that I can't find a clear statement. His current theory is that CFS is a function of low tissue oxygen state which is being maintained as some kind of protective mechanism. D3 is somehow bad in this.

    My experience is that increasing Vitamin D levels needs to be done slowly, especially if you are low, because it both ramps up powerful endogenous antibiotics and induces apoptosis (normal cell die-off) in body cells infected by intracellular viruses and bacteria. I have known a number of people who have treated CFS related coinfections by high dose D3 to great success, but noted significant die-off reactions as they did so. A lot of people confuse these reactions as a sign that D is "toxic" to them and stop, rather than it is a sign that bacterial/viral die-off is toxic, and slow it down. Since D is stored in fat tissue, lowering the dosage may not bring lessening of die-off for a number of days, until the stores are used up, so most CFS'ers have to proceed carefully.
    A really good collection of Vit D literature and benefits can be found at www.vitamindcouncil.org and at http://www.cpnhelp.org/vitamin_d_1

    UPDATED: Just found this thread which discusses why Cheney thinks D3 is toxic (it induces p450 enzymes to process it), along with two comments by some knowledgeable folks I respect-- Mark London and Rich K-- which question Cheney's conclusions about this. Scroll down to the end of the page for their comments: http://www.prohealth.com/Fibromyalgia/blog/boardDetail.cfm?id=1346629
     
  10. FernRhizome

    FernRhizome Senior Member

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    Thanks JimK!
    That is very interesting about the vitamin D3. Extremely helpful to have both sides of the story. I have incredibly severe osteoporosis and have lost half my spine. But increasing D3 leaves me bedridden and then I can't go around the block. I'll try sticking to the 400 mgs & see how I do. Unfortunately I seem to do okay on it for a few weeks and then as it builds up I get worse again. Perhaps it will end up having to do with what subset of CFS I am in or the level or type of retrovirus I have. I'll check out all the links you sent me. Many, many thanks. ~FernRhizome
     
  11. FernRhizome

    FernRhizome Senior Member

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    WPI & their own clinical trials

    Hi folks:
    While I am waiting for my lab kit from WPI I also signed up on their website to be in a future clinical trial and they even called me to confirm that yes, I wanted to be in a trial. I am wondering if anyone has heard if and when they will actually enroll patients in a trial with free testing? I know they have plans to do so but do not know the timeframe.

    Also hard to imagine how they'll get all the testing done when VIP is totally backed up! And I wonder what their clinical trial directions will be. Has anyone heard anything about this? Did anyone else get called like I did?

    Also, I have bone marrow, bone, and muscle in the deep freeze that is available for testing. I wrote WPI and let them know this but have not had a response. I wonder if any other researchers would be interested in my frozen biopsy samples? ~FernRhizome
     
  12. Cloud

    Cloud Guest

    I filed the clinical trial application on their website months ago, but I never got a phone call. I am wondering if WPI is only planning to implement and coordinate a clinical trial created by a drug company rather than something of their own. Are they waiting for a drug company to knock at the door, or is WPI planning to do this themselves? I'm not sure how this will work using drugs already available. Will the FDA have to be involved? Research facilities that conduct medical clinical trials are typically just handling it for a drug company, but because of different circumstances with this situation (ie, we already have the drugs available) things may be different. Anyone know?
     
  13. cfs since 1998

    cfs since 1998 *****

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    Does vitamin D from sunlight affect P450? Maybe that would be a better way to get it?
     
  14. FernRhizome

    FernRhizome Senior Member

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    Vit. D, P450, sunlight

    I think sunlight does pass by the P450 enzymes. I am missing one of my P450 2D6 enzymes and that may be why I have trouble metabolizing it and can't handle a high dose. I live in the north, however, so I am considering going to a tanning place to get my vitamin D! Though that can have harmful skin effects from the tanning lights....~FernRhizome
     
  15. FernRhizome

    FernRhizome Senior Member

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    Klimas video series/isprinine? Diram?

    Hi Folks:
    I just watched the Nancy Klimas video talk. In the last video (#11) she mentions what sounds like isoprinine as a supplement as well as something that sounded like Diram, a sleep inducer. Does anyone have the exact spelling on these two treatments? Thanks! ~FernRhizome

    Ten series video of Klimas talk:
    http://cfsknowledgecenter.ning.com/video
     
  16. fairlight

    fairlight

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    maybe

    diazepam (Valium)?
     
  17. FernRhizome

    FernRhizome Senior Member

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    Nope, it wasn't a vallium family....it was a new deep sleep drug.....~FR
     
  18. Hysterical Woman

    Hysterical Woman Senior Member

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    Inosine

    Hi Fern,

    I believe she mentions inosine in there. It is what Dr. Cheney is using for some of his patients who can't afford immunovir - at least at think he uses that as a "substitute". It is late so I am not sure I am getting that right. In any case, I am taking inosine and have noticed some improvement in my energy level and cognitive function (altho you would never know that from my last statement :D). However, I am not sure if it having an impact on my immune system since I can't really afford to get the tests run.

    I am careful to pulse my doses of inosine as it helps to keep it to continue working. I try to follow the schedule that Cheney uses (I am not a patient of his, but a friend of mine is). However, I have never been able to tolerate the dose when it is 6 tablets a day - the most I can do is 4. I initially had nasty nausea with even the 4 tablet dose but that gradually improved, now I am having really increased muscle pain when I take it. It feels similiar to the muscle pain I experienced when I was a patient in the ampligen clinical trials several years ago. The muscle pain is helped by Aleve and very warm baths with magnesium oil.

    Not sure about the sleep inducer that Klimas mentions.


    Hope this helps,

    Maxine
     
  19. Recovery Soon

    Recovery Soon Senior Member

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    Klimas comments on testing

    In Dr. Klimas's video, she said:

    "if I ordered a blood test on you right now and it was negative, what would happen to your soul? You know, and yet it might not really be negative, in fact its got a one chance in three of being wrong."

    Does this 1 in 3 chance of being wrong apply to the CD and VIP DX tests going on now?

    In other words, should we not be taking seriously the lack of positives we are seeing?

    I know her comments were about a month ago- but are they still relevant?

    Thanks.
     
  20. Jimk

    Jimk

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    Did she mean Xyrem?

    I think the sleep med you are referring to is Xyrem. It is used to treat narcolepsy, which appears caused by lack of deep stage sleep, as well as to induce deep stage sleep for fibromyalgia (and CFS) patients who also lack due to constant alpha intrusions. No deep stage sleep, no rest.
     

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