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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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Negative XMRV CFS study with Ila Singh's name on it (University of Utah)

Discussion in 'XMRV Research and Replication Studies' started by Jemal, May 4, 2011.

  1. Cort

    Cort Phoenix Rising Founder

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    The only bit of 'insider information' I had was that Shane had bumped into a person in the elevator who told him that he had tested positive. That was a long time ago and it was quite exciting since it appeared that the Singh lab was the first to find XMRV in a CFS patient after the WPI.

    It turns out that was a 'false positive' - apparently due either to contaminated reagents or from XMRV 'getting out', I guess of spiked samples (?), or by robotic equipment getting contaminated after extracted XMRV DNA from cultured cells.

    This is a rough field.......

  2. GoWest

    GoWest

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  3. Cort

    Cort Phoenix Rising Founder

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    That's one thing it does not do. It does not explain why the WPI got all those positives. (some suggestions have been made about the patient/healthy control split (different methods of sample preparation, increased handling of the controls). That split could actually be fairly easy to explain in the original study since the samples were gathered in two different ways.

    The really difficult thing to explain is Dr. Mikovits report of the many control samples that have been gathered since then testing negative since that takes that issue out of the question. Their continuing to find high levels of XMRV in CFS patients and low levels of XMRV in controls in samples gathered using the same procedures - is difficult to explain in light of this paper. That fact would suggest that everything is on track.....yet here Illa Singh does this comprehensive study and can't find any XMRV - except for a few contaminated samples.

    Obviously somebody is wrong.
  4. Doogle

    Doogle Senior Member

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    But Singh is suggesting the contamination is due to the reagents used in the PCR amplification which should be the same for patient and control samples. That should exclude sample preparation or increased handling of the controls.

  5. kurt

    kurt Senior Member

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    There are many good research threads in CFS right now. I have personally made great progress over the past year since I decided that XMRV was unlikely to work out. What did I do? Started studying B12 metabolism, enteroviruses, treatments for OI/POTS, etc. And then worked out an approach that has really helped. Maybe not a cure, not the silver bullet everyone has been hoping for, but there CAN be progress right now.
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Have WPI come out and said anything about this study. Its not looking good for us. The thing is if xmrv doesnt turn out to be the 'one' i hope they dont forget about us, theres all those other abnormalities found in our testing like nk dysfunction, high viral titres etc, if xmrv doesnt pan out, i hope they keep looking and dont start recommending bloody exercise again.

    One other thing, has there been many cfsers who have tested positive who have improved drastically on ARV's, i just havent heard much about this?

    cheers!!!
  7. Navid

    Navid Senior Member

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    what helps your oi/pots and are you taking oxymatrine?

    thanks for your help.


    regards,
  8. kurt

    kurt Senior Member

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    The combination of things I am doing helps, including a multi-B12 protocol, mineral replacement, etc. I am still studying the oi/pots, that has been the hardest symptom to improve on, and am considering the g-suit idea. The point is that there is plenty to do still.
  9. Cort

    Cort Phoenix Rising Founder

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    Good point Doogle...if it was there it wouldn't make sense that it was in the reagents in the original study (unless different batches were used to test the controls and the CFS patients.,..(you know its really getting crazy when you're talking about different batches of the same reagant).

    .
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    conspiracy theory, is Singh getting payed off. Its just an updated version of oslers web, same crap different decade.

    cheers!!!
  11. liquid sky

    liquid sky Senior Member

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    How exactly did Singh prove she could find a positive human sample with her various methods. She did not repeat the study exactly as did either WPI or Alter. Why can we not get an EXACT replication study done?

    I keep thinking about a comment Judy made at the SOK conference. She said that it was HIV+1 that creates AIDS. I am reading about the history of the discovery of HIV. It sound so much like what is going on with ME. The same infections are mentioned, cytomegalovirus, nteroviruses, EBV and others. The difference was it killed. Otherwise, I think they would not have gotten funding or research either.
  12. usedtobeperkytina

    usedtobeperkytina Senior Member

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    liquid sky

    liquid sky, I agree.

    I am reading "And the Band Played On" now.

    If only our pee were blue.

    Tina
  13. WithHope

    WithHope

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    I do not believe that there is any conspiracy theory and I think it reflects badly on patients and their carers not to take this study very seriously. Here we have one of the best XMRV scientists in the world (Singh) collaborating with one of the best ME/CFS experts and advocates (Bateman) and the results of their comprehensive study : there is no association between XMRV and ME/CFS.

    The quicker we accept this confronting truth and move on the quicker we move towards real solutions.

    The WPI has done an extraordinary job of firmly placing ME/CFS on the map. Surely our job now is to keep building on the momentum, to keep engaging more scientists and more policy makers and the only way to do this is to keep talking scientific truth.

    We must turn the work of the WPI into a success (that does not rest on the XMRV findings alone)... conspiracy theories turn off policy makers government officials and other scientists. They run for cover..

    We now have a huge amount of scientific evidence that firmly tracks significant biological abnormalities in people with ME/CFS (beautifully illustrated in particular by Komaroff). Our future in finding an effective treatment/cure rests on building on these scientific findings- not fixating on a disproven theory.
  14. ixchelkali

    ixchelkali Senior Member

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  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Im just hoping they dont ignore the biological abnormalities, because this is what happened in the early 90's. They knew about high viral titres to herpes infections and nk dysfunction etc etc and it all got ignored until xmrv came about, thats over 15 years of psychobabbling, we dont want that again. If u read oslers web its hard not believe in a conspiracy theory with cfs, its very like history repeating itself, early 1990s verse 2009 onwards. I jst dont want it all stuffed up again and have to wait another 15 years.

    cheers!!!
  16. liquid sky

    liquid sky Senior Member

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    So true, Tina. I am reading the same book. Fascinating how closely it mirrors current issues in ME/CFS.
  17. VillageLife

    VillageLife Senior Member

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    I'm Reading and the band played on as well.
  18. liquid sky

    liquid sky Senior Member

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    I am not advocating any conspiracy theory. XMRV has been shown to infect human tissue. It is growing in a human cell line, as we type. It is by no means time to move on from further research. That is all I want to see, good old science, working out the scientific process without politics involved. Why can't they perform a replication study using the exact procedures that have been shown to find the virus?
  19. serg1942

    serg1942 Senior Member

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    Why am I improving treating XMRV with GcMAF???

    Hi all,

    I am worn out right now (3am in Spain after a long and busy day), but I couldnt help to read the full article and this thread, as this is the first time that a study actually semi-replicates the first Lombardi et al study.

    I dont know enough to go into details, and I am not up to it right now anyway, so I will wait for others reports. Instead, I am going to make a quick reflection from a different angle:

    I am XMRV + by culture (2010, VIPdx) and by PCR STOMACH BIOPSY (Redlabs 2011).

    I am following GcMAF, and I AM IMPROVING plausibly
    . The progress is being more noticeable everyday, especially after the 10-11 injection (I have been given 15 injections so far, and I am supposed to reach the maximum improvement after the 30th +-, according to my genetics.

    Have PWCs improved with ARVs? Well, initially some, but most of them relapsed.

    But, is people improving with GcMAF, that has shown to eradicate HIV in 18 weeks in non-AIDS patients? YES, and the results are quite impressive for many.

    Then, what am I fighting with GcMAF, that is improving my CFS so obviously? Of course I am improving my non-specific, my Th1, and indirectly my Th2 immune responses, so I am fighting infections, and getting rid of them successfully I assume.

    If it is not XMRV (from my Layman point of view, this is far from be clear), then what is it? Another virus? Another viruses?

    According to a Dr. Cheneys patient, he is finding Nagalase high in all his CFS patients, and most of them get better with GcMAF, while Nagalase lowers (same pattern than HIV-infected and cancer patients).

    Is Nagalase also derived from viruses other than HIV, and theoretically XMRV? I have not read about this.

    Even if WPI in the USA and Redlabs are finding just contamination, we know from monkey studies that XMRV is not found in blood after a few weeks of acute infection. However its been found in certain tissues. Well, Ive been found XMRV sequences in my gut I Also have been found HHV-6 in my gut , and recently was published the relationship between Herpes viruses and XMRV.

    Considering everything, the fact and the unknowns, are my 2 positives false? Lets think they are:

    WHY GcMAF is working following the same pattern as in HIV infected patients?


    WHY is this not studied further?

    WHY is it known that XMRV is present in tissues, and yet, studies do not look in tissues, instead of in blood?

    WHY dont we have a 100% replication study of the 2 positive studies?

    WHY did they only test for 14 samples of the Science study, out of which only TWO were positive?

    If XMRV or related MLVs are out there (I dont think this is questionable), WHY this study did not find even 1 positive? By chance, they shouldve.

    Ok, I finish here. I go to sleep a bit worried because I dont know for sure what is making me sick, but at the same time I go to sleep very glad because yesterday I had the best day Ive had since I am sick, and they are in general better and better over time. Will this continue? No idea.

    It has to be an infection. Yes, genetics, toxics, metabolic blocks, oxidative damage, etc. All this is a key part of CFS. But I am improving "just" treating infections with the best possible approach, i.e, our own immune system. It is not difficult to draw the map of how getting rid of XMRV or other/s puppet master infections can lead to solve the rest of issues found in CFS.

    Just my 2 cents!

    Buenas noches,
    Sergio
  20. liquid sky

    liquid sky Senior Member

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    Sergio, great post. I am so glad you are getting better. I don't understand too much about GcMAF. Every time I think I will read the thread on it, I get overwhelmed.

    Thanks for posting about your results at this late hour for you. If you have the time, could you come back later and give an explanation for dummies (me) on how exactly it works and the theory involved? I would really appreciate it.

    Thanks, sky

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