1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

Top scientists to meet at Cleveland Clinic on trial of XMRV

Discussion in 'XMRV Research and Replication Studies' started by Katie, Nov 10, 2009.

  1. InvertedTree

    InvertedTree Senior Member

    Messages:
    157
    Likes:
    5
    Although I agree with part of what you said I have to strongly disagree that "gays themselves" weren't interested in finding the virus. I'm surprised that you even went there.

    As someone who witnessed firsthand what happened in the gay community as a result of government neglect and homophobia I can say that people in the gay community WERE ETREMELY motivated to find the reason they were dying in huge numbers.
  2. Katie

    Katie Guest

    I think the main bonus of this meeting can be summed up in Dr Coffin's 'One New Virus, How Many Old Diseases?" (or words to that effect, I've just come back from two and a half hours of sign language classes and I've lost the will to research, you know what I mean ;))

    My point is, the scientists going will each have their own agendas and good for them, it's going to work in our favour to see dozens of papers on autism, atypical MS, Gulf War Syndrome, prostate cancer, childhood Alzheimers and all the other ones I can't remember. It's all going to add to the validity of XMRV, and therefore (hopefully) XMRV's role in CFS/ME. We're not an antelope separated from the herd to be picked off by the big bad lion of the CDC, we've got the potential to be part of a bigger and more powerful entity now. There's safety in numbers.

    I'll also add that I wanted to jump up and down like a giddy teenager when I read that Mikovits is on her way. I feel like we've got someone fighting our cause on the cutting edge and she punches hard.
  3. _Kim_

    _Kim_ Guest

    Hi George,

    I had not read about the XMRV/ALS connection. Do you know what journal published that study?

    Thanks,
    Kim
  4. George

    George Guest

    Hi Kim

    Here is the link http://www.neurology.org/cgi/content/abstract/70/4/278 Notice the CSF which is clear spinal fluid <big grins> during a brain fog moment I kept reading it as CFS and was soooooo confused.
  5. Advocate

    Advocate Senior Member

    Messages:
    506
    Likes:
    14
    U.S.A.
    I'm sorry. I should have emphasized that this disinterest was at the beginning of the epidemic. I'm currently reading "And The Band Played On," and I'm up to the beginning of 1983 (the middle of the book), and the gay activists and a handful of doctors who treated AIDS and a few researchers at the NIH & CDC are finally making a little progress.

    But in the beginning, according to the author, Randy Shilts, the gay activists were stunned by the hostility they got from many gay politicians and gay business owners and the gay media, who were afraid that the talk of a virus and a disease that was killing people would end with them all being quarantined or put in concentration camps, like the Japanese during WWII. I was surprised to read all of Shilts' examples of denial of AIDS by gays--in the beginning.

    By 1983 there were more than 1,200 dead, and AIDS was finally hitting the media and opinions were changing.

    One thing that impressed me was how quickly the retrovirus was found--once somebody with a lab and trained scientists started to look for it. I'm at the part of the book where Gallo (American) wants the new retrovirus to be called HTLV 3 because he discovered HTLV, but the French know it's something different because it has the opposite effect on T-lymphocytes.
  6. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    4
    mountains of north carolina
    Ha! Well, I can dream, right? Even though I'm just a girl? BUT:

    What she said.
  7. Advocate

    Advocate Senior Member

    Messages:
    506
    Likes:
    14
    U.S.A.
    Here's something I just noticed on the Cleveland Plain Dealer website. It says that the Cleveland Clinic has "additional data that has not published yet."
    ====================

    A study demonstrating that the virus XMRV could be an important marker for aggressive tumors was published in the September journal Proceedings of the National Academy of Sciences.

    In 2007, researchers from the Cleveland Clinic and the University of California, San Francisco -- led by Dr. Eric Klein, chairman of the Clinic's Glickman Urological Institute, and Dr. Robert Silverman, a cancer biologist in the Clinic's Lerner Research Institute -- first discovered the virus, which is present in prostate cancer tumors.

    The latest research on XMRV was conducted at the University of Utah.

    "Prior to [that research] and additional data that has not published yet, no one had shown that the virus could cause disease in humans," Klein said. While no one has yet proven that the virus causes prostate cancer, the newest findings "suggest a mechanism" of that happening, he said.

    The topic is so hot that the Clinic in November will host an investigative meeting of researchers from across the country.
  8. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    XMRV and ALS

    Great find George.

    Not to get too off-topic here, but reading this article raises more questions than it answers for me.
    Any idea why XMRV was not detectable in the blood? Maybe not the same test that WPI developed? Might we be looking to include ALS along with the FM and autism and atypical MS group of patients showing a certain percentile having the retrovirus?
    Thanks for the heads up on this. I STILL kept reading it as CFS. More reason to give us a NEW NAME!
  9. George

    George Guest

    on going XMRV testing

    Hi Gracenote
    If you notice the date on the study it's Received December 6, 2006. Accepted in final form July 18, 2007. So the blood test wasn't available at that time. It's in the same time frame the WPI was doing their research. However they did find 50% of the patients were positive for Reverse Transcription activity. So while they couldn't name the virus they did find a different way of identifying the action was viral.

    I don't know if this has been posted else where but the question of XMRV being sexually transmittable I think was answered by this study in April 2009

    bold and Italic are mine. I could be wrong in the way I'm reading this but I'm pretty sure it means that it can pass from person to person via sex. Feel free to weigh in if you interpret differently or if you have additional facts.
  10. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    don't want to add misinformation

    Thanks Levi,

    I think I missed the point of the article. Kind of tired-fried-brain day. BUT I still wonder, how comparable was their blood test to the one VIP used? Did VIP create something new with their test or did they just test a new population for XMRV? What kind of test did that German study use? Are we comparing like with like? Or is this something that will need to be sorted out as we go along? Even WPI only found (and I don't have it in me to look this up) 65% ??? initially with the virus, but nearly 100% after they refined it. Or so I'm thinking at the moment.

    I don't want to be adding misinformation here, so I apologize if I'm speaking out of turn.

    ----------
    While I was posting this, George made another post and I realize that all of this is WAY over my head. I respectfully take myself out of this discussion so that those of you with a working brain can prevail.
  11. George

    George Guest

    Hi Levi
    I may be reading it different.
    The date of the study was end of 2006 so my guess is they didn't have the correct array in order to do the test. Just like the Germans didn't have the correct array in order to do the Prostate cancer test. So the ALS people may need to go back and redo the test. They did find RT going on at very high levels and they had never gotten that far before.

    But that's just my take.
  12. Mark

    Mark Acting CEO

    Messages:
    4,501
    Likes:
    1,923
    Sofa, UK
    I'd like to challenge the idea that the reason scientists are so much more interested in XMRV in relation to prostate cancer than to CFS is because prostate cancer is "a guy thing", which a couple of posters have suggested in this thread.

    Sure, CFS apparently affects more women than men, and I have no doubt that sexism has been a factor in the dismissive attitude to CFS. But actually, if you look like-for-like and compare the attention given to breast cancer with the attention given to prostate cancer, you would draw some quite different conclusions about the gender politics.

    I don't have any statistics to hand, but last I heard, prostate cancer had just overtaken breast cancer as a cause of death in the UK, and the incidence and death rates for prostate and breast cancer had always been comparable. Yet breast cancer has received vastly more attention than prostate cancer. In the UK, breast cancer screening has been steadily ramped up with big campaigns about it, there is a lot of media attention, and high-profile charities for breast cancer. Prostate cancer, on the other hand, is not screened for, and has received very little attention. Only in the last few years have the alarm bells started to ring, mainly because the prostate numbers are now looking more blatantly significant after so much progress has been made with breast cancer.

    Ask yourself this: how much more do you hear about breast cancer than you do about prostate cancer? The difference is massive, considering that the two conditions have similar incidence and death rates (and I do hope somebody's not going to pop up with stats to debunk that assertion! It's just what I've read...)

    So actually, prostate cancer has been greatly under-emphasised, perhaps mainly because of the taboos and embarassment that surround it, and if you analyse the issue more deeply I suspect you would conclude that any gender dynamics going on here are not to the benefit of men.

    Instead, the reason why researchers are more interested in prostate cancer than in CFS has more to do with the massive over-emphasis on cancer research in recent decades, to the detriment of almost all other medical research. In the UK, the top fundraising charities are all cancer charities, and the cancer charities dwarf all other charitable income. This money massively distorts medical research.

    So: I don't think it's "a guy thing" - I think it's "a cancer thing". Cancer is where the money is at.

    Worse, there is a big 'conspiracy theory' argument about cancer research that somewhat parallels our experience of the organised distortion of CFS research. The Simon Wessely of that world (in the UK) was the massively influential Sir Richard Doll, who towards the end of his career drove a policy (in both US and UK) of NOT researching environmental causes of cancer (despite having identified links with smoking, radiation and drinking earlier in his career), nor looking for cures. Instead, research has been almost exclusively focused on treatments, which are of course much more lucrative.

    I have long believed that this policy is hugely misguided, to an extent that - as with CFS - leads one to naturally think 'conspiracy' because it's just so unfathomably dumb. History tells us that the big scientific breakthroughs come in unexpected areas, almost apparently by chance, and often quite unrelated to the subject actually being studied. The rational policy is to support academic freedom, to leave room for boffins to decide for themselves where to focus their research, and to cast the net as widely as possible in the search for knowledge.

    So the above politics of cancer research (which those of you with an interest in "MCS" are probably aware of) also feeds into the XMRV story in an incredible emerging parable of the errors of recent decades. Just imagine: research into XMRV and CFS may well end up unlocking the secrets of the immune system, the relationship between the immune and neurological systems, and maybe even some big clues to the causes and etiology of cancer. If XMRV can cause prostate cancer, and if we can trace exactly how it does that, maybe that will lead to a much deeper understanding of what cancer really is...who knows where this may lead?!

    I think the emerging lesson here is that when you ignore a set of apparently trivial issues, you are ignoring the clues that could help you solve the really big problems you're struggling with. It's similar to the 'broken windows' theory. In my experience of resolving tough problems with complex networked computer systems, that is one of my golden rules: look for the little, weird, apparently trivial clues that lead you to the heart of the problem.

    And if it turns out that while they've all been busy ignoring us for a few decades, we've been busy infecting them with a retrovirus that can cause cancer...well, that would be a parable, and it would be hard for me to resist saying "serves them right!".

    Apologies for rambling again...guess this had better be my last post of the night!
  13. acer2000

    acer2000 Senior Member

    Messages:
    570
    Likes:
    200
    I agree 100% Mark. Good analysis.
  14. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    Congratulations, Levi!

    Thanks Levi for your response. And congratulations! I see that you are now a "senior member." Quite an accomplishment. You joined after me, so I'm very impressed. Your posts have been interesting and helpful and thought provoking. I hope you plan on sticking around.
  15. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

    Messages:
    337
    Likes:
    0
    > Yet breast cancer has received vastly more attention than prostate cancer.

    In S Dakota recently, the median age of death is 81 years for prostate, 71 years for breast. Women also have +5 years of life expectancy at birth compared to men, so the total difference in life-years lost is 15 years. Prostate cancer is perceived as less treatable partly because chemo and surgery are more problematic at a greater age. Its also hard to tell which prostate tumors are worth treating -- if you take treatment and then die of something else, it can be a waste of money and suffering.

    http://doh.sd.gov/Statistics/default.aspx
  16. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    4
    mountains of north carolina
    Good points, Mark. I don't know much about cancer politics. It seems to me that, in the past, CFS has been so dismissible (for those doctors who are inclined to dismiss): a "women's" illness, not fatal, not contagious. Well, times have changed! XMRV is seen in prostate cancer for the sexists, which brings up the c-word, a powerful one as you say, and to top it all off, it's contagious and surely in the blood supply. The perfect storm of an important disease entity. Really I think even Wessely, Reeves, et al can't put this genie back in the bottle. Thank god. I can't wait to hear what comes out of today's meeting.
  17. Mark

    Mark Acting CEO

    Messages:
    4,501
    Likes:
    1,923
    Sofa, UK
    Actually, I'm lucky enough that I'm working (part time) at a University and I happen to have access to the full Science article, which I've read (with only partial understanding). You quote above is spot on I think Levi, based on the publicly available information, and that's what I thought until I read the full article. But...

    My reading of the Science article may be slightly off, but the way I read it, buried away in the detail there is actually a mention in the supplementary pages of a very small antibody test on 10 subjects. 9 of the 10 had antibodies, and none of the controls did.

    I hope I read that right, because it makes sense, paints a clear picture, and answers the crucial question as to whether the 95/98% positive on the antibody test is seen in the controls too (which would indicate that nearly everyone had been exposed to XMRV and the 95/98% figure isn't meaningful). It also explains where that 90% figure came from, that some other researchers have mentioned regarding the antibody test. The public information was >95% which refers to subsequent unpublished testing, but anyone who was just going off the published data would say 90%.

    If you think about it, this pretty much must be the case. WPI wouldn't be making such a big deal of the >95% antibody results (actually I thought it was even subsequently updated to >98%) if the antibody results for controls were high - and similarly they wouldn't be talking about this result having not tested on controls at all. That would just be dumb, and the heroes of WPI sure ain't that! My guess is that their data on antibody levels in controls is not ready for publication, they're preparing to publish some of that data in the future, and they have to keep quiet about it in order to keep Science happy.

    I don't actually know what the legal situation is regarding the intellectual property of the full article, but I'm pretty sure it would be a rather bad idea for me to copy and paste the whole thing on this site...much as I'd love to...
    Maybe even this post is a bit dubious because (assuming I have it right) I'm revealing information that's only available to subscribers.

    But while I do understand roughly how the publication system works, and the theoretical justification of it all, ethically I believe very strongly that the whole business of restricting access to scientific articles to a scientific elite priesthood is a complete disgrace. This research was privately funded, so the ethical argument here is less strong than it is for research paid for with public money (ie my money). But I bet the WPI team would love to reveal all their results to the CFS community, and they are restricted by having to play within the rules of the system. That difficult decision is probably a big part of how they managed to get published in Science at all - if I was them, I would see the withholding of information from the public as a massive but necessary compromise of principles in order to achieve the more important goal of gaining recognition for CFS as a physical illness.

    Does anybody know what I can/can't do in relation to revealing details from the full text of the Science article? I think the above point is all I could find that was really useful info not made public, but if I have another look tonight I may be able to find some more juicy details, and maybe confirm what I've said above.

    I'm now tempted to raise some of the tentative ideas I've had recently about setting up internet-based surveys to take science out of the hands of the priesthood (Cort's polls on the test results are a very interesting model, for example), but maybe best leave that for another day...
  18. Mark

    Mark Acting CEO

    Messages:
    4,501
    Likes:
    1,923
    Sofa, UK
    PS:

    It's just occurred to me, based on thinking about Levi's post, that the 3.7% of controls that tested positive were - as Levi points out - a test for active viral infection (in the blood(?)). In another thread, I've been pondering what "healthy" controls really means. But it's only just occurred to me that the nature of the test that 3.7% of controls tested positive on was for infectious virus, which seems to mean that those controls are all infectious!
  19. Sing

    Sing Senior Member

    Messages:
    1,301
    Likes:
    421
    New England
    Thank you, Mark! You are a mole in the system (CFS spy mole) which is delightful. I appreciate the information and also your knowledge and feelings about both the rules and the ethics involved.

    Cecelia
  20. The antibodies will obviously be a blood test, looking for antibodies to XMRV
    (So we know that bit).

    But, Isn't the 'culture' test the live XMRV virus grown over time in a petri dish?
    (E.g cultured) ? I'm sure I did that as kid in Science class. I remember putting a pipette of some liquid or another and warming it over night and growing 'bugs'.

    Last time I looked there are/will be/were 4 tests for XMRV @ VipDX were/will do, however they've altered the website.

    PCR Active XMRV
    Culture Latent XMRV
    IgG Antibodies (not out yet)
    Serum Active W-Blot Assay (not out yet)


    I'm guessing the full diagnostic evidence for a patient with XAND in 2010 (What was called CFS) would be something along the lines of:

    Antibodies and live culture for XMRV + Chemokines/Cytokines + T/B Cell + a reduced cardiopulmonary test (stress exercise test)? <-- E.g Pacific Labs findings, which as far as I know are unique in any disease. E.g delayed 48hr reduction in cardiac output.

    That's diagnostic in itself (exercise induced *delayed* cardiac output drop), but wrap it up with and + XMRV test and other immune abnormalities and surely this is XAND (What was called CFS) finally diagnosed. :eek::)

    I'm sure the Aliens are working on this for us all. (The friendly Aliens in WPI, not Area 51).

See more popular forum discussions.

Share This Page