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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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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. Daffodil

    Daffodil Senior Member

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    i heard this rumor too....but i cant imagine this had much to do with it. doesnt this paper also cast doubts about the existence of XMRV in prostate cancer? if its a contaminant here, it would probably be a contaminant there...?
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    agree daff
     
  3. insearchof

    insearchof Senior Member

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    This sounds like a very good question and idea.

    Is there any reason why this could not be done and might not work?

    And or why not also examine tissue taken from the gut identified as X+ and do it, with that?
     
  4. Jemal

    Jemal Senior Member

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    It could be she is bluffing or trying to comfort patients. I am hoping for a very strong positive study... but it's getting less and less likely.
     
  5. toddm1960

    toddm1960 Senior Member

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    CBS when I said negative studies are published in weeks......that's weeks after being completed, not that the study took weeks.

    Daffodil it seems no positive studies will be published due to good science.
     
  6. eric_s

    eric_s Senior Member

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    I can only repeat myself, before she explains the 0 positives in 200 healthy controls and draws the logical conclusion from that, it's far from over.

    Everybody who talks as if it was, is losing my trust to some degree. Not that this matters to those individuals or organisations, i'm just saying it to put my point of view out there, maybe it can be a bit of a counterbalance, so people can see there's not only one way to look at this situation.
     
  7. Sean

    Sean Senior Member

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    Don't have time for a detailed reply, but that is a very problematic claim. For a start, it depends heavily on which diagnostic criteria is used. Etc, etc, etc.

    Despite the claims from a range of people, often with a large vested interest, the bottom line remains that we simply don't know a whole lot about this disorder, there are far too many unanswered basic questions, including epistemological ones.

    Ruling things in or out in the way some (more-or-less) have is not wise at this stage.
     
  8. insearchof

    insearchof Senior Member

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    As comprehensive as this study may be, it still raises questions and fails to address others.

    It will be interesting to see Singhs belief as to how and or whether, this study impacts her previous work.

    I think Alex raised an important point, which may gather steem as Singh comments on the impact of this study on her other work - and that is - identifying all potential sources of contamination in labs.

    Is it a replication study of Lombardi et al or not? I am yet to read the current study but I would only say this.

    A patent was taken out by the University of Utah, and referenced the names of a couple of the authors of this study and their work in relation to XMRV. The purpose of a patent it to lay claim to a novel process. The process, subject of the application - must be distinguishable in some way from what was pre existing, for the patent and intellectual property rights to attach. At least that is my understanding of how they operate.

    Unless I was mistaken, I thought this patent covered Shin, Singh et al processes re XMRV in CFS.

    Therefore, if the process used in this study are the same as those detailed in that patent, then it would have to be said that there was sufficient deviation from methods used by others (ie lombardi et al) on this occasion - to rule out the current study as a true identical and replicative study.

    It will be interesting to look at this matter more closely as I read the study.
     
  9. Cort

    Cort Phoenix Rising Founder

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    Actually Schutzer used plenty of samples.....my guess is that they only looked for two strains of XMRV??? but I don't know.
     
  10. Cort

    Cort Phoenix Rising Founder

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    I agree there is this allure to finding a single cause for ME/CFS. Who knows maybe someone will find one - but I don't think that happens very often in chronic illnesses, which are, by their nature very complex. That said I think some people in this large illness do find either single treatments or multiple treatments that make them much better.

    The cross-reactivity question is really interesting - altho Satterfield said antibody tests are built off PCR tests and if the PCR test isn't working that throws the antibody test into question. It should be noted that no antibody tests after the Lombardi paper have been positive either and virtually every study now does them.
     
  11. Cort

    Cort Phoenix Rising Founder

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    I think its a good point that this disorder is quite heterogeneous. If FM researchers believe there are 4 or 5 subtypes there think how many there must be in ME/CFS. One kind of red flag regarding XMRV was that it appeared to show up in about 90% of people with ME/CFS according to the WPI. That was rather alluring; it was nice to think that we all had the same thing - and it was certainly possible - maybe XMRV was the puppetmaster causing different symptoms in different people - but maybe in the end that was asking too much of one virus. Of course AIDS does do that - but HIV/AIDS was clearly infectious - they knew that almost from the get go and there's really no one tie that binds everyone with ME/CFS together like that.
     
  12. Daffodil

    Daffodil Senior Member

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    i hear that one of the samples in this study was from the patient they got the image of the virus budding from....what does this mean? that patient had another virus?


    we have all put a lot of effort and even money into the WPI. i think its time we start demanding some answers. they told us time and time again that XMRV is positively IT...and not to worry about the politics....that is not fair!

    i am just so despondent now.
     
  13. Daffodil

    Daffodil Senior Member

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    didnt ila singh apply for those XMRV patents??? whats up with that?
     
  14. Daffodil

    Daffodil Senior Member

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    maybe the wpi will say this is all because it lives in tissue....we need to contact WPI and demand they start doing biopsy studies NOW
     
  15. Jemal

    Jemal Senior Member

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    Yes, she got all those patents. The question remains if she thinks XMRV is all contamination or not. She could have applied for the patents when she didn't know yet XMRV was contamination.

    I am certainly very interested in a reaction from the WPI regarding this last study.
     
  16. eric_s

    eric_s Senior Member

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    There's no need yet to start hypothesizing about other viruses being the reason for the results, and not XMRV. Yes, of course it might turn out that the positive XMRV studies were wrong, but it's just not the time for that yet. This was just one piece of news and we have to try to stay calm through this. I know it's not entirely possible, for me it was a blow as well.

    I agree, we should hold the WPI to the same high standards as anyone else, we should not blindly follow anyone. They have to provide answers.
     
  17. Daffodil

    Daffodil Senior Member

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    well its pretty much guaranteed that joliceour and houghton are going to release 2 more negative studies. so, unless glaxoosmith kline and alter are going to pull a rabbit out of their hats, we are screwed. this is unacceptable. just unacceptable. we have been sick so long, and have let everyone walk all over us. i feel duped. used. again.i stayed alive cuz of xmrv, literally!
     
  18. caledonia

    caledonia

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    I agree this research is very disappointing.

    I find the quote by Racianello very curious - that other viruses are similar enough to XMRV that if you have one of these viruses it will make you show up XMRV+. (Of course, I can't find the quote now to post it here.) I would like to see a list of what those viruses are...

    I think it's highly likely that there could be more than one virus or retrovirus caused by using animal products in vaccines.

    I also think that Rich Vank has already come up with the mechanism for CFS. All that is required is a chronic stressor which can be anything from viruses to abuse. The chronic stressor causes the partial methylation block, which in turn causes adrenal fatigue. Once you have the methylation block and adrenal fatigue in place, it can be very difficult to dig out of. Furthermore adrenal fatigue causes hidden food allergies which in turn become their own chronic stressor.

    So until the researchers work out what the chronic stressor viruses might be, I'm working on the methylation/adrenal/food allergy end of things, and hope that will be enough to put the genie back in the bottle.
     
  19. Evangelina

    Evangelina

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    I am just going to toss in my two bits here.

    First of all - I have had CFS/ME for 20 + years. I am at the very least equal to almost everyone else here in the amount of suffering and pure hell (which in this case is a place and not a swear word) that I have lived through.

    Second - I want a cure - any cure - as much as anyone else on this planet. I want to be free. I want to be well.

    Bearing those two things in mind:
    To say that Iliah Singh or Dr. Bateman do not want a cure is to bite that hands that are trying to feed you. Do not think for one moment that these two people do not want the best for cfs/me and humanity in general. To say so is both absurd and offensive.
    There is a clear difference between saying that XMRV is (very loosely paraphrased here) probably not related to CFS/ME and saying that there is no biological cause of CFS/ME. What if in a month or a year someone finds that something like 'ugly hairy butt virus' (trying to make y'all laugh) is the cause of CFS/ME? What if 'ugly hairy butt virus' is easy to cure? Will you be angry that XMRV is not the "it" you hoped for? Will you demand to be treated for XMRV?

    I rather suspect that the anger, frustration and as one respondant said "despondancy" is caused by a feeling of futility in progress made towards a cure rather than a distinct study.

    If you believe that Dr. Bateman and Dr. Singh and the Drs. Lights will give up and declare that no cure can be found, then you do not know them very well nor do you understand the thrill a scientist feels when chasing a theory.

    I know that a cure will be found for this disease and that it will be in the near future. It is looking like it will not be related to XMRV. Perhaps it is 'ugly hairy butt virus' - who knows?

    The most important thing to remember is that by working together in a constructive manner, focusing on remaining brave and stalwart in the face of seeming tragedy, and above all maintaining hope in the future will see all of us through to a better life both in the future and in this moment.

    Giving up hope is like giving up life. Remember that parked cars are impossible to steer. "Around here, however, we dont look backwards for very long. We keep moving forward, opening up new doors and doing new things and curiosity keeps leading us down new paths. - Walt Disney
     
  20. Live And Let Die

    Live And Let Die Senior Member

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    Evangelina, great perspective. Thank you.
     

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