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"We Are Not Alone" on CFIDS Assn web site (by Suzanne D. Vernon)

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by ahimsa, Jun 3, 2010.

  1. ahimsa

    ahimsa Senior Member

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    Oregon, USA
  2. parvofighter

    parvofighter Senior Member

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    "Controversial finding" - flames fanned by CAA

    Firstly, thanks for flagging this, ahimsa. And please note that the tone in my post is entirely directed at the CAA.

    Lessons in Revisionist History: XMRV "started out" as a controversial finding
    I found this line rather ironic:
    "If the association of XMRV with CFS is confirmed, what started as a controversial finding will turn CFS into an intense and fundable area of research one with relevance to the many other immune-mediated syndromes that presently lack firm biologic explanations."
    Let me get this straight. Our Suzanne is blithely contending that the XMRV-in-CFS started out as controversial.... That's a good one! For those who wonder at this revisionist history, perhaps some facts are in order:

    1. The Science finding started out as a supernova. It was a stunning breakthrough, that easily eclipsed Dr Vernon's own work @ the CAA - exciting though it is in its own right.
    2. Lousy "validation" research was conducted. Incomparable lab methods. Spurious cohorts that ignored the abundant information available in the Science article's supplemental materials.
    3. Dr Vernon personally fanned the flames by expressing "genuine" concern that subsequent 3 studies hadn't been able to find XMRV. And she pointed the finger of responsibility squarely at the WPI. As was reported in Pharmaceutical Executive,
    Sleuthing on her own, Vernon was able to uncover some suggestive information about the 32 CFS patients samples about which WPI originally reported assay results....".... And she concluded by throwing down the gauntlet: Until methods are standardized and the scientific community is provided information about the specific characteristics of the CFS subjects who tested positive in the Science paper, be prepared to read more negative studies."
    Inexplicably for an advocate of ME/CFS patients, Dr Vernon neglected to apply the same sleuthing skills to the feeble replication attempts, specifically not to the tattered Vercoulen paper - the source of the 20-year old blood of tired, depressed patients studied by van Kuppeveld et al, and published in the BMJ.
    4. And now we are re-educated that XMRV started out as a controversy. It "just happened". Puhleez. Dr Vernon horrendously maligned the most exciting finding in the entire history of ME/CFS, and has no doubt personally contributed to the delay in funding for promising XMRV research.
    Sucker punch from behind: the Bertuzzi/Moore incident
    I am reminded of the famous Todd Bertuzzi/Steven Moore incident in the National Hockey League, when Bertuzzi notoriously sucker-punched Moore from behind. http://proicehockey.about.com/cs/nhlnotebook/a/bertuzzisuspen.htm. Moore "suffered three fractured vertebrae in his neck, a grade three concussion, vertebral ligament damage, stretching of the brachial plexus nerves, and facial cuts." http://wapedia.mobi/en/Todd_Bertuzzi

    Lessons in How Not to Apologize
    In an impressively masterful evasion of responsibility, Bertuzzi famously skated around the incident, dexterously implying that it "just happened":
    "Steve, I just want to apologize for what happened out there. I had no intention of hurting you, I feel awful for what transpired," said Bertuzzi, head hung low. "To Steve's family, I am sorry you had to go through this. I am so sorry about what happened out there.
    Bertuzzi's so-called apology was upheld by the media as a shining example of how not to apologize.

    One-upmanship
    Vernon has one-upped her personal attempts to scuttle XMRV by not even apologizing for - much less acknowledging - her poor judgement in the months following the Science article ... nor for her green-eyed, unbalanced criticism of the Science work - to the exclusion of the ragged "rebuttal" studies. Nor has Vernon shown any indication of committing to support promising ME/CFS research - whether it hails from the CAA's efforts or not.

    Nor, I might add, has Vernon - nor anyone at the CAA - responded to my letter of March 21st, specifically requested by a CAA representative:
    I read your message as stating that you believe Dr. Vernon has been unprofessional and unscientific because she has criticized WPI and its methods, instead of criticizing the authors of the three negative studies. Is this correct?... I completely agree with you that the Association should be accurate,credible, and balanced. In fact, that is the instruction the Board gave to Ms. McCleary and Dr. Vernon as the guiding principle in providing information to the public about XMRV.If you have specific concerns about the articles by Dr. Vernon, I would very much like to hear them and understand what parts of the articles you find objectionable.
    Excerpt from my reply:
    Yes, I am deeply concerned at what I perceive to be a significant, unprofessional, and unscientific
    imbalance in the critique and very open criticism which Dr Vernon has leveled at the WPIs XMRV research. Recognizing that this does go in contrast to the edict of the Board for the guiding principle for the CFIDS in providing information to the public about XMRV, I do not repeat this concern lightly. I trust that, based on your swift response to my personal message, this will be taken seriously and redressed quickly.

    "The possibility that the CFIDS through intemperate and unbalanced coverage of the XMRV science potentially discourages further XMRV research is unconscionable. Yet this is a very real possibility. Just look at the media storm in the UK contending that XMRV doesnt exist there. Yes, your organization is under a microscope.
    Our lives literally depend on it."

    It is no wonder that the CAA is under the gun from legions of ME/CFS patients who rightfully demand better. Balanced coverage of the science. Enthusiastic support of ANY meaningful advances in this dark-ages disease. And integrity in reporting of history.

    As for a reply from the CAA... I'm not holding my breath.
     
  3. Robyn

    Robyn *****

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  4. Kati

    Kati Patient in training

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    Parvo, you're a superstar. Thank you for expressing this publicly.

    I really feel this sense of disconnect between them and us the patients. Patients have waited for DECADES for a moment like the one on October 8th 2009. Day after day after day, I am waiting, and I know that thousands other are.

    I am a little bit worried of what Suzanne Vernon will tell Vincent Racaniello. I hope that his mind won't get contaminated.
     
  5. jspotila

    jspotila Senior Member

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    Given the varying types of media coverage we have seen since the Lombardi paper was published, I think it is fair to say that the initial finding was seen as controversial. We've seen it in the media, in statements by researchers, and the controversy over the three negative studies.

    This is not true. The Association publicly congratulated the WPI team on October 9th, and immediately began working on a long list of efforts to promote well-designed replication and validation studies, as well as providing current and accurate information to patients. No one at the Association has maligned WPI or the Lombardi paper.

    This is patently false. To accuse Dr. Vernon of stonewalling XRMV research funding is insulting to her, and is personally offensive to me. The Association is facilitating research into many aspects of CFS, including XMRV. Both Dr. Vernon and Ms. McCleary are involved in the federal efforts on XMRV, and have lobbied for increased funding for CFS research and XMRV research. This is some of what they have been doing, as stated in the June CFIDS Link:

    We are engaged, we are excited, we are supportive of high quality research, and we are working to maximize the opportunities we have right now.
     
  6. parvofighter

    parvofighter Senior Member

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    The issue is ANY preventable delay in XMRV research by CAA actions

    With all due respect, your or Dr Vernon's feelings are not the issue. The far larger issue this:

    To stonewall XMRV research causes grievous insult,
    and is personally offensive to millions of ME/CFS patients.


    It is gratifying to see the CAA express intent to get on the XMRV bandwagon. However revising history will not mend broken bridges.
     
  7. Robyn

    Robyn *****

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  8. ixchelkali

    ixchelkali Senior Member

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    In the controversy regarding the CAA and Suzanne Vernon, I'm still firmly on the fence. But this article seems to ask the same questions I'm asking. What, precisely, is the role of XMRV in causing disease? How does it relate to the other microorganisms associated with ME/CFS, like Epstein-Barr, HHV6, enteroviruses, etc? What are the mechanisms involved? What determines who gets ME/CFS and who lives asymptomatically with these pathogens? If XMRV is the key, how does it work?

    Maybe it's as simple as XMRV disrupts the immune system, similar to the way HIV does, allowing other pathogens to gain a foothold. But somehow I think it's more complicated than that, and I hope there isn't such a rush to retrovirals that we overlook something key. My guess is that there must be an interaction between XMRV and other infections, and there must be some mechanism that is causing an acquired mitochondrial disease. I hope well see research into this.

    But of course, the first step is good replication studies. Then we can settle down to the real research. I hope.
     
  9. omerbasket

    omerbasket Senior Member

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    jspotila, my feeling is that Dr. Vernon, and perhaps the CAA, is trying to look at XMRV as a virus that does not cause ME/CFS. As a virus that is not related to ME/CFS or that is just a coinfection. Now, if we are looking just to NOT-FIND-THE-CAUSE-FOR-ME/CFS, that is the right way to go. But if we are looking to find cause for ME/CFS, the right way to look at this situation would be to say: "Well, it's very unlikely that a virus which is find in 98% of ME/CFS patients who fulfil the fukuda criteria and the Canadian Consensus Criteria would not be the cause of ME/CFS. Possible, but highly unlikely".
    But the feeling I get, and I assume others here get, is that Dr. Vernon and the CAA are doing all they can in order to look at XMRV as a virus that does not cause ME/CFS. Now, imagine that a major advocacy association for AIDS would have tried in the 80's to look ar HIV as a virus that does not cause AIDS. And imagine that their oppinion would have been accepted and that until today very high percentage of people with AIDS would have died quickly because we wouldn't know the cause of AIDS.
    You've said:
    Perhaps from the bold words here you can understand why I feel that the CAA is concentrated on finding XMRV as a virus the does not cause ME/CFS by it's own. And when you have a virus that is found in 98% of ME/CFS patients that fulfil the fukuda criteria as well as the Canadian Consensus Criteria, I think that looking at XMRV as one thing equal to other 100 things regarding the research about ME/CFS, is a wrong thing to do that may keep us sick and may prevent the finding of the cause of ME/CFS. We first have to explore if this virus is the cause of ME/CFS, and only if it would be found not to be the cause, explore other possible causes, which at the moment every which one of them seems much more unlikely (again, even though possible).
    It's said to see that the CAA is not thrilled at the possibilty thaty arrose here, to find to cause of ME/CFS and treat ME/CFS patients in the best ways.
     
  10. bullybeef

    bullybeef Senior Member

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    It is becoming very clear that many organisations, in the UK, and the US, have deep foundations of institutionalised, opposite agendas, to clearly create negative ME propaganda. Or in English, people on the inside whom don't wish ME to become what they fear the most, worse than AIDS, in respects to severity, exposure, and more importantly, the economic cost to cure ratio!!!

    The UK/NHS cannot afford so many people to become empowered by the truth of their disability.
     
  11. jspotila

    jspotila Senior Member

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    There is a misunderstanding here, I think. You say that you get the feeling that the Association is doing all it can to look at XMRV as not being the cause of ME/CFS. But this is not the case. The Association is not making an assumption that XMRV is not the cause, nor is that the basis for research design or advocacy for more funding.

    To the general research world, there has been one study showing 67% of CFS patients have XMRV. The 98% number you quote has not been published in peer-reviewed literature yet, so for the general research audience that number is not relied upon. Dr. Silverman, a co-author on the Lombardi paper, said the following in his article last week on XMRV in Nature Reviews - Urology:


    Silverman's view is very consistent with the Association's.* The role of XMRV in CFS must be researched and must be understood. It's possible that XMRV causes CFS; it's also possible that it does not. But it does not make strategic sense to drop all other kinds of research in CFS. The illness is too complex, and there are too many questions that need answering. NIAID just funded two grants looking at infectious agents and CFS, and we still need that to happen.

    The bottom line is that the Association wants the role of XMRV in CFS to be fully and aggressively investigated. We want every aspect of CFS to be fully and aggressively investigated. We are not advocating for funding or designing research studies with a pre-conceived belief about XMRV. The Association is committed to the highest quality research into objective diagnostics and effective treatments.


    *except for the blood safety issue, because the Association believes that CFS patients should not donate blood
     
  12. parvofighter

    parvofighter Senior Member

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    Please bump this up at CAA

    In a challenging position
    While I appreciate your attempts to address this thread jspotila, the reality is that we need Dr Vernon and/or Dr McCleary to respond. You are caught in the middle - without the authority nor the responsibility indeed, to redress the CAA's initial response to XMRV, which was lacklustre, to put it very kindly.

    Constructive Redress Needed
    The reality is that the CAA massively dropped the ball on XMRV for months after the Science paper, contributing to the global erroneous perception that the 3 failed XMRV studies were a real source of concern, and directly allowing promising XMRV research and funding to be delayed. In the absence of any acknowledgement that the CAA could have done better - by providing more balanced critique of ALL XMRV research - promises of vigorous support of XMRV sound, frankly, disingenuous.

    This is not a witch hunt.
    This is a vital trust-building activity with the CAA's raison d'etre: ME/CFS patients.


    There are several ways in which redress might productively happen:

    • Kim/Suzanne write an open letter to your consitutents (the millions of patients with ME/CFS)
      • Acknowledging the biased critique of XMRV research by Dr Vernon - heavily weighted against the WPI, in the early months after the Science paper.
      • Committing to uphold the edict of the CAA Board - to provide in future balanced coverage of XMRV research, and to vigorously pursue XMRV truth.
      • A "We have heard your many voices loud and clear, and we acknowledge that we can do better" would be a promising start. Self-congratulatory pats on the back, however, that the CAA is excited about XMRV and doing everything it can however, is at dissonance with Dr Vernon's track record.
    • We invite the CAA board to review balance in Dr Venon's past XMRV pronouncements. That, after all, is one of the functions of the board: to provide strategic guidance to the CAA leadership. Perhaps equipping them with a copy of Scandal at the BMJ might help to illuminate the sink-holes in Dr Vernon's enthusiastic sleuthing of flaws in the WPI's XMRV research. The fact is that it took a patient to identify massive gaps in the van Kuppeveld research - presented by the BMJ - and indeed endorsed by Dr Vernon herself - as a serious blow to XMRV/ME/CFS research. Shouldn't the CAA have been all over XMRV research of the pathetic calibre in the BMJ? Any ME/CFS 101 student could have eviscerated this woeful article. Why did it take an ill patient to do this? I'll tell you why. It's because Dr Vernon was so zealously and one-sidedly trashing the WPI's work. Patients were - and still are - rightfully and deeply concerned that XMRV funding and promising research were being delayed - or were not being conducted, as a result of the biased coverage of XMRV by the CAA for several months. It's one thing to have foot-dragging and delays from the BMJ and the psychomafioso in the UK and Netherlands. But to have anything but full-bore and balanced enquiry by the CAA into ALL XMRV research flaws - particularly the most egregious ones from across the pond - is unconscionable.
    Setting the record straight:
    Several of your comments bear discussion, but for now I will focus on the logic gaps.
    • Any rational ME/CFS patient with rudimentary understanding of science, understands completely that the fat lady has not yet sung on XMRV. That, after all, is what this discussion is centering on. We want her to sing - either way - and ASAP. Let's find the truth. And while I would heartily agree that we are desperate - having lost massive chunks of our lives, and many of us living with progressive and dangerous cardiac, neuro, and multisystem sequelae - no patient in their right mind wants a placebo. We know full well how ill we are. We desperately need to understand the cause(s) of ME/CFS - and treatment. And we need it soon - before more of us die an untimely death, lose jobs, houses, family, friends. It is cold, hard reason that is driving us to demand accountability so that the CAA does everything in its power to accelerate any promising research. And frankly, XMRV looks the most promising of the lot.

    • At no point did I recommend that the CAA drop all other kinds of research. The point I am finding myself having to reiterate is that the CAA must demonstrate insight, in recognizing that they sorely dropped the ball in the early months after XMRV, by demonstrating bias in their very public discussion of XMRV. In doing so, the CAA squandered its most valuable currency: the trust of the patients it serves. If any market segment deserves to be listened to, it is your constituents. We are telling the CAA: DO EVERYTHING YOU CAN TO ENSURE THAT XMRV RESEARCH IS AGGRESSIVELY AND THOUGHTFULLY RESEARCHED. PROVE TO US THAT YOU "GET IT" THAT PAST EFFORTS NEED IMPROVEMENT. PROVE TO US THAT YOU MEAN IT, AND THAT THIS IS NOT JUST LIP SERVICE. (And yes, CAPS are shouting: this is a chorus that needs to be shouted from the rooftops). I and many others are waiting to hear official acknowlegement that the CAA is indeed doing that. Like it or not, the CAA's track record is dismal, and no amount of well-intentioned arm-waving will revise history. As one of many examples, consider that it was Pharmaceutical Executive, not patients, who described Dr Vernon's critique of the WPI as "throwing down the glove". If there was to be any drama, Dr Vernon should have been throwing the glove at the garbage XMRV research emanating from the UK and Netherlands.
    I am reminded of the classic challenge facing parents on the arrival of a second child: how to reassure the first-born that they are still loved, and that the parents have big enough hearts for both children. No, we're not asking that the first child (all the existing CAA research) be dropped. We are demanding that the possibility of the second child (XMRV) be welcomed with open arms - and balanced, energetic, enquiry.
    • The bottom line is that the CAA's actions - up until very recently - have been antithetical the above statement. And that is why we NEED to hear loud and clear that the Association "gets it" that a fresh, unambiguous course is needed. Supporting high-calibre Canadian-criteria ME/CFS/XMRV research. And dissecting the flaws. Simply telling severely ill patients that they are wrong - when they do not toe a party line in conflict with reality - is an excellent pathway to alienate your constituency - the patients who drive the CAA's paycheques, and research platforms.
    Bump it up
    Please bump this discussion up, and have someone respond authoritatively on the issue of balance in XMRV coverage and CAA efforts to this regard. As you know, there was a thread called "The CAA is listening". THIS is the time to be listening, so that past errors can be redressed. Rest assured, if the CAA unambigously demonstrates integrity and balance in its current and future XMRV efforts, AND acknowledges that it can do better than it did in the early days of XMRV, this whole issue of trust will become nothing more than an unfortunate milepost in history.

    I can promise you that patients will continue to be mistrustful and up in arms as long as there is the feeling that the CAA is petulantly dragging its feet on XMRV, and offering platitudes. This is neither helpful for patients, nor for the CAA. NOW is the time to DO something about the reality of the CAA's track record on XMRV. Have the brass at the CAA admit that the CAA was in low gear with respect to XMRV, and demonstrate how you will move up to Mach 1 now, please!

     
  13. omerbasket

    omerbasket Senior Member

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    Well, when you say: "It's possible that XMRV causes CFS", and soon afterwards you say: "The illness is too complex", it seems that you suggest that XMRV is not THE cause for ME/CFS. You might be right, although many researchers would think you are wrong (and many others would think you are right). But, it seems to me that the things that we hear from the CAA suggest that the general opinion there is that XMRV is not THE cause for ME/CFS. In my opinion, that is a very wrong way to work here. First of all, because, as they say, "keep it simple". First see if it's THE cause for ME/CFS, and if you find that it isn't, start looking for other factors. the other cause relates to this sentence of yours:
    That's the issue here, that is were the CAA is wrong. In hebrew we have a phrase that says: "If you catched a lot, you didn't catch anything", meaning that if you try to have everything you would not have even one thing. Unfrotunately, I guess that the CAA have limited resources when it comes to funding and to the human resource. You need to know were to invest your resources. If you somehow think that XMRV-research should get the same amount of money as, let's say, HHV-6 gets - in my opinion that is absolutely a wrong thing to do. You won't catch anything.
    When the police have a lead on a murder, they follow it. They don't exclude other possibilities, no - and everyone of us should not exclude other possibilities regarding the cause of ME/CFS, even if we have no lead on them or that we have a weaker lead. But we should choose our proiorities, since our resources are limited. Therefore, we should follow the strongest leads we have. And that is, by everyone who is objective, XMRV, which was founded in 98% of ME/CFS patients who fulfiled the fukuda criteria and the CCC criteria. Right, only the 67% figure was published in a peer-reviewed journal (and actually, in the most prestigous scientific journal in the world, after 6 months of peer-review, as oppose to, let's say, Wessely's study which was published after 3 days of peer-review), but still, we have no reason not to trust WPI's further findings, because it is an institute that got his study into the journal "Science", which means it's an institute that knows how to make research, and mainly because it's an institute that was established by parents of a sick child, and this institute's whole idea is to find the REAL cause for ME/CFS. It has no reason whatsoever to publish incorrect findings. Yes, it would be more reaasuring if it was peer-reviewed and published, but since we don't have it right now, we should turn on our brains and think: What are the chances that these findings are false?

    Anyway, as I see it, almost everyone who is familiar with the WPI's work sees the WPI asw the main institute that might help people with ME/CFS - and have much more hope coming from them than from the CAA or other organizations.
     
  14. Robyn

    Robyn *****

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  15. Kati

    Kati Patient in training

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    Grant #1 :

    This is a very broad research, it's not even telling us what they are researching really other than "pathogens". If you don't know what you're looking for, you won't find it.

    Grant #2:

    Stress Effects on Virus Protein Induced Inflammation and Sickness Behavior
    Ronald Glaser, PhD
    Ohio State University

    Here is the profile of Ronald Glaser (PHD):


    So here we go again, assessing the stress effect and "sickness behavior"on infectious disease. Please! 700 000$ just for the first year. Sickness behavior? Psych lobby?
    Once more, WPI has been left behind in funding some VERY importaint research. Why??? Why??? NIH is failing a population of sick people with a pathogenic retrovirus and refuses to fund research for said virus.
     
  16. Cort

    Cort Phoenix Rising Founder

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    Please tone the rhetoric down and stop using such inflammatory language: It's fine to disagree with Dr. Vernon and point out what you believe to be the CAA's errors but saying the CAA is 'stonewalling' XMRV research is overly inflammmatory. For one thing the CAA is a small organization that has little effect on what other researchers or the federal govt does with regards XMRV - they hardly have the resources to stonewall research efforts. If you think XMRV is not being funded adequately - and given the numbers that are ongoing, I can't imagine why you would say - then please look elsewhere. For another Dr. Vernon's cautions were reflected by many other ME/CFS organizations and researchers and the CFIDS Association BioBank's first study is to do a replication study of XMRV.

    Again, its totally fine to critique the CAA but we're trying to get away from really heated language. Thanks
     
  17. Cort

    Cort Phoenix Rising Founder

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    XMRV studies

    Here's a list of ongoing studies by the way; its missing 3 more that were just reported

    United States

    • Large DHHS Study
    • Dr. Bell will be assessing patients from his pediatric Lyndonville cohort from the early 1980's using Dr. Ruscetti 's laboratory at the National Cancer Institute. A recent report suggested the study may be finished by the time he takes off on his European tour in the autumn.
    • The CDC's HIV division study will reportedly assess WPI samples, Wichita/Georgia samples and hopefully samples from other CFS groups. As of Oct 29th Dr. Miller reported that 100 'CFS' samples had been tested.
    • CFIDS Association of America will collaborate with Glaxo-Smith Kline to test for XMRV in a cohort similar to that found in the Science study. The CAA will provide samples from its BioBank and GSK will do the testing. Importantly they will include people who have tested positive for XMRV by VIP dX/WPI in the study.
    • Cooperative Diagnostics Lab in South Carolina is reportedly using cutting edge technology to assess XMRV. They are believed to be providing the HIV division in the CDC with samples.
    • Cornell University in cooperation with the Columbia University Center for Infection and Immunity and the Whittemore-Peterson Institute are embarking on a study assessing XMRV status in relation to functionality
    • Hemispherx is reported testing Ampligen responsive patients at WPI. They recently reported that about 2/3rds of patients tested positive and that the sicker patients with XMRV did better on Ampligen than other patients.
    • Dr. Brigette Huber of Tufts University tested several hundred samples from physicians in the US for an enzyme XMRV produces. She was able to recover the enzyme from samples the WPI provided but not from the CFS patients. She concluded that a contaminant in a reagant was responsible for the WPI's results. This study did not find XMRV
    • John Hackett of Abbott Labs and his team are reportedly creating a blood test for XMRV
    • Dr. Joliceur at L'Institute de recherche attached to the University of Montreal in Montreal, is reportedly doing a 50 patient study - This study did not find XMRV
    • Dr. Nancy Klimas - ME/CFS patients in her ongoing "Good Day: Bad Day" study - Miami, Florida
    • Dr. Nancy Klimas - Gulf War Syndrome patients in another ongoing study - Miami, Florida
    • Panorama Research Institute in Sunnyvale, Ca. is developing their own XMRV test for CFS. (They were advertising on Craigslist for patients)
    • John Petros of Emory University in Atlanta is developing clinical tests for XMRV
    • Dr. Ruscetti of the National Cancer Institute is reportedly working on serology tests for XMRV
    • Stanford University involving Dr. Montoya's EBV positive patients is believed underway
    • Dr. Illa Singh, Dr. Light and Dr. Bateman and ARUP are working on a second larger XMRV study after the first study (apparently) had positive results. Read about it here.

    UK and Europe

    • a UK study involving Dr. Kerr and including samples from Dr. Enlander in the US - uses both Fukuda and Canadian criteria, assessing gene expression in NK cells and XMRV status - Target Date - Summer 2010 ; this study was canceled after the first study did not find any positives.
    • Invest in ME announced in March that they were pairing with the WPI to study XMRV in UK ME/CFS patients. Check out a discussion about it here
    • another UK study from the University College London College London - this study did not find XMRV
    • Imperial College Study involving Dr. Cleare, Dr. Wessely and Dr. McClure- this study did not find XMRV
    • a Swedish study - Target Date - Spring/Summer 2010 - this study with Dr. Jonas Blomberg is reportedly using new cutting edge technology. It will look at approximately 140 CFS patients with FM and IBS and healthy controls - this study was reportedly postponed after the lead researcher met with a tragic accident
    • Robert Koch Institute - Norbert Bannert is redoing his (negative) prostate XMRV study using a new antibody test and appears to be testing ME/CFS patients as well
    • Kiel University in Germany - Dr. Mikovits reported this study
    • Ellie Barnes in Oxford, UK - Dr. Mikovits reported
    • Institute Ferran in Spain - 100 patients with demonstrated abnormalities on repeat exercise tests/100 controls Study begins - January 2010
    • University of Pisa in Italy - will do an XMRV study on chronic fatigue syndrome and fibromyalgia. They started advertising for positions to work on the study in April, 2010.
    • Kuppeveld in the Netherlands - this study did not find XMRV
    Further Afield

    Dr. Lloyd in Australia is reportedly testing his Dubbo study patients.
     
  18. consuegra

    consuegra Senior Member

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    I read these current articles of the CAA in disbelief. What world are they living in? Well I can tell you - they live in an academic, sordid and competitive world where anything goes. There is a history here - and it is a sorry story. Revealing the details would not lead to anything productive. The good news is that the CAA have indicated that they want to get on board now, and this really is very good news. I think it is time to move on.

    Chris

    http://cfspatientadvocate.blogspot.com
     
  19. Cort

    Cort Phoenix Rising Founder

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    Despite your ardent sleuthing it turns out that it was all for naught. As you may remember the WPI found that two out of the seven samples tested from the Kuppeveld group were positive for XMRV; ie the fact that that group demonstrated the characteristics you appointed out apparently made no difference to the study results - Dr. Vernon turned out to be correct in that instance. I don't see how you can see it any other way?

    I think there are two things that are problematic here; a) you're mistaking a researchers caution for something else and b) whether consciously or not you're setting up an us versus them scenario regarding the Whittemore Peterson Institute and the CFIDS Association.

    Dr. Vernon did not one-sidedly trash the WPI's work - that's what you say - but if you look at her pieces you'll find they are mixture of hope and caution. I think if you'll look again you'll find that in many places she aknowledged their work and in others she pointed out what she felt were problematic areas. Its like this piece - you cannot say that piece is negative about XMRV - and you can't say its completely positive either - but its being represented as trashing XMRV - but it does nothing of the kind, it simply doesn't support it as fully as you would wish. !

    While I agree that early on the CAA could've should/should've been more enthuiastic about XMRV, after what, 6 or eight negative studies now, (not all published), their caution is looking a little more understandable (if not particularly enjoyable). I think they deserve the right to be cautious - even if its not the popular choice. But as I noted even this piece looked forward - it suggested what will happen if XMRV is validated in CFS - it was not a negative piece at all.

    The CFIDS Association might be able to impact how the patients view a situation but thinking that they somehow have the ability to effect researchers doesn't make sense; if they could tell the NIH or CDC how much to fund CFS or where to put their money our situation would be alot different. Federal health bureacracies, as you well know in the UK, are very resistant to change from patient support groups. God knows we wish that was all different.

    While the CAA has not been as enthusiastic as many patients would wish about XMRV - they have still put precious resources into it - they're the only group other than Invest In ME that is putting money into an XMRV study that I know of.

    While I understand your desire they would just come out and say something wholeheartedly positive- which in all honesty they have done but it gets lost in their more cautious statements - they are putting money into it - those are hard earned dollars and they don't have alot of them. I would point out that most of Suzanne's post was quite positive towards XMRV.
     
  20. Cort

    Cort Phoenix Rising Founder

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    Please!!!! Did you read what I said? Did I say ANY questioning of the CAA is 'inflammatory". What did I say?

    That was in regard to this quote

     

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