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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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The real story about XMRV coming out today?

Discussion in 'XMRV Research and Replication Studies' started by VillageLife, Sep 23, 2011.

  1. Ecoclimber

    Ecoclimber Senior Member

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    Well Bob, I have to agree to disagree. Back in January of this year Mikovits and Annette Whittemore gave a presentation in California at Gordon Medical. Here is the link with the slides:http://lannieinthelymelight.blogspot.com/2011/01/part-2-11711-xmrv-presentation-by-dr.html

    XMRV is all over the place. Not to mention that xmrv is linked to Chronic Fatigue Syndrome, Multiple Sclerosis, Fibromyalgia, Chronic Lyme Disease, Autism, ALS, Cancer etc., etc. without any scientific research or clinical validation. Research Scientist do not make those claims unless they can back them up with peer review research. This is not the 'scientific method'....famous quote from someone. These kinds of statements is what diminished her credibility within the scientific community and essence is hurting the research into finding a cause and cure for this illness. Could it be another retrovirus or hgrv? Could be but the outbreaks indicate a spread by aerosol methods with a 3-4 day incubation which normal signifies a viral or bacterial pathogen. Could be other triggers. What I do know from talking to a number of leading retrovirolgists is that this whole scenario makes them want to wash their hands from any research in ME/CFS and just maybe is the strategy that the WPI is using to create a niche market for themselves.

    I can't figure out why they needed to spend 70 plus million dollars for a research facility when that money could have been used in ME/CFS research. I mean who needs another lab. The funds could have been earmarked to another research lab under the condition that it would be used for ME/CFS research under the leadership of Lombardi and Mikovits....just thinking.

    With all do respect.

    Eco
  2. Jemal

    Jemal Senior Member

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    Personally, I have not been so impressed by some of these leading retrovirologists. So I don't think that I am sad that some of them want to walk away from ME/CFS research. If it's true that a retrovirus is not involved, I don't think we need them anyway. I have to see it to believe it as well. XMRV is a tempting study object, so they might continue to study it, though probably not in the context of ME/CFS. There's still a lot of grants associated with XMRV that haven't run out either. And if another retrovirus is to be associated with ME/CFS, all of these retrovirologists will probably be back.

    It looks like the WPI are going to continue what they are doing. Unfortunately it also looks like this will further divide our community, but so be it.
  3. In Vitro Infidelium

    In Vitro Infidelium Guest

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    My own view is that the association of M.E/CFS research with the WPI/Mikovits has been a net negative, although incidentally the Science paper (for all the wrong reasons) may well have helped raise the stakes at the funding decision level. But we do need to keep the financial aspects of the WPI in perspective. The $70 million is a figure related to the building of a facility at the Univeristy of Reno, of which the WPI is one of several occupants, the WPI occupancy is related to a $1.1 million gift from the Whittemore Family Trust to U of R which was used as seed funding for the building project - the rest of the money came from Nevada tax payers, although Harvey Whittmore had offered $5 million. Why the U of R didn't take up HW's full generous offer is a question Nevada residents might want to ask.

    The bulk of research funds used by Mikovits et al have come from US goverment sources, apparently on the back of the Lombardi paper; other income has come from fund raising events ( gala dinner affairs) and donations from M.E/CFS affected people, plus the Internet voting operations. The XMRV blood tests will have generated income in the range of $500k - $1.2 million on WPI's own figures for cost range and numbers tested although it's unclear how much of that actually came back to the WPI.

    The sale of an unvalidated test to desperate people who were encouraged to believe they may have a disease comparable to HIV is in my view far more worthy of contempt than the misdirection of research funds in pursuit of an hypothesis that was always of dubious merit. Causation of M.E/CFS by a single infective agent in 70%+ cases was never going to be a reasonable hypothesis without explantion of how infection was highly gender specific acoss populations that have little differention in gender roles. Mikovits even (surreptitiously) acknowledged the problem when she started talking about research that was reporting gender parity in M.E/CFS.

    The high positives should have been an alert that Lombardi et al was flawed, and to have have started selling the test without independent validation was ill advised to say the least, the tests were marketed by a company which at the time was owned solely by Harvey Whittemore. The testing company paid licensing fees to the non profit WPI, and it is possible that the private company procssed the XMRV test on a cost only basis. The company is now owned by the WPI, the public documents that define the terms of the transfer do not yet appear to be available but the the transfer may have been by way of gift. Whether such a gift would now have continuing value given the withdrawl of the XMRV test is open to question, although prior to transfer the business was licensed to carry out validated medical tests so it may continue to be a finance generator for the WPI. Whether the WPI will be of value to M.E/CFS research in the future is also an open question, one that will probably divide M.E/CFs affected people for some time to come.

    IVI
    barbc56 likes this.
  4. Esther12

    Esther12 Senior Member

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    Yeah.... but Mikovits was been equally forthright in her position, and didn't get criticised in the same way.

    McClure's original position, that XMRV definitely wasn't in UK CFS patients but probably was in prostate cancer patients, didn't really make sense, and in combination with her association with Wessely, I can understand people feel that was the result of a dismissive view of CFS... but she still got unfairly attacked. While there were legitimate reasons for criticising her position, a lot of people went way over the top. (There were also things like her saying "I never want to be involved with CFS again" - and then taking a position on the American CFS council one month later - more reason for legitimate patient concern there too...).

    But regardless of any poor choices certain researchers made in the presentation of their results, or the way they communicated with the media, we still had a minority of CFS patients insisting that these virologists were incompetent, or not really interested in finding XMRV, when it now seems the WPI have accepted that their own testing does not perform as they reported in Science, and is not reliable. I think that it might have only come from two or three patients, but they were still noisy enough to create a poor impression, and I fear that they may have made people/scientists/media more dismissive of when CFS patients make legitimate complaints about problems with the way our condition has been treated.
  5. Bob

    Bob

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    I think this could be answered by the interplay between infectious agent and hormonal factors or other gender differences.
    i.e. Men and Women are equally susceptible to infection but women are more susceptible to illness.
  6. redo

    redo Senior Member

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    What puzzles me in the whole of this, is why Lombardi et al. didn't do such a simple blinded test earlier (before the Science publication). All they would need would have been a handful of samples from healthy people and CFS patients. I mean, it could cost no more than what the analysis cost. I haven't read the whole Science publication, but I am guessing they didn't use right-from-the-body samples from both sick and healthy, but rather used some bio bank samples. I doubt using such bio bank samples is some thing which only they do, I am guessing it's standard to do it that way...
  7. oceanblue

    oceanblue Senior Member

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    The Dubbo study hypothesis is essentially that the illness is the result of an excessively strong initial immune reaction - and women generally produce stronger immune reactions so there are potentially good reasons, as you say, for a gender difference here.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Also 2 or more infections at the same time or close together. My cfs started from a post viral state from cmv mono where i got severe chickenpox(for the second time in my life) and also in the post viral state of chickenpox is when i got ebv mono, but was it a direct immune defiency or immune defiency caused by a retro or immune suppression from the initial infection for which i didnt recover and fell ill from the next infection and so on and being in this immune supressed state drove these infections deeper???? So within 6 months i got these 3 herpes infections, would any normal person recover from this episode of infections, i think most would struggle. I also think women especially mothers and their roles are underestimated in how tough their roles are with constant sleep deprivation and 24 hour demands on them from children and husbands etc.My job entails constant sleep deprivation which i also think took its toll on me and can sympathise with mothers with this sleep deprivation. Im male by the way with no previous illnesses and had a high degree of fitness before falling in at 31y/o. I think alot also depends on the amount of time given to rest when these infections arise, myself as an example, i had 2 weeks of from the chickenpox infection as that was all the sick leave and annual leave i had at the time and with a young family to support more rest was impossible, so like most cfsers we pushed through the fatigue to the dtriment to our health, hind site is a wonderful thing, mm.

    Multiple seperate infections could also be missed or dismissed as a relapse initially or another flu type illness etc. My cfs dr said it was common to see cfs people initially suffer multiple infections close together as well as having one severe infection. I also dont think the gender bias towards females is a great as people may think, not that i have met alot of cfs people but i havent met any females face to face, only males, maybe we gravitate towards each other as women tend to look for companionship and an ear to listen too where men typically go straight for looking for treatments and fixing the problems(you know without reading the instructions as we do), i am generalizing here though as its varying degrees of both.

    interesting topic ocean blue,
    cheers!!!
  9. FancyMyBlood

    FancyMyBlood Senior Member

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    I also remember Mikovits and other saying there is no gender difference at all. If you use the right criteria it's a 50/50 male/female split. Don't know if they used published data or not, but I'm pretty sure this was said in the past.

    That being said, I believe the auto-immune hypothesis is worth exploring. I agree that with IVF that a single infective agent as a cause of ME/CFS doesn't really sound plausible.
  10. In Vitro Infidelium

    In Vitro Infidelium Guest

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    That's fine but testing two hypotheses where one is reliant upon the other is, to say least, 'challenging'. Ideally the existence of a gender specific immune response needs to be established separately from testing an infection involvement hypothesis, though I suspect there will be those who will invoke a circularity by saying the infective agent has to be identified first and that only then can the gender specific immune response hypothesis be tested because the infective agent is a special case. Realistically it's unlikely that any serious research is going to go down this route because the multiplicity of potential targets is so great. If gender specific immune response to infection (as against immune response to other environmental agents) is a factor in disease progression then it seems likely it would be evident across a range of infections (unless an immune system hijacking agent in envisaged) and that the defining characteristic would therefore be immune response not specific infections.

    IVI
  11. redo

    redo Senior Member

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    Appreciated.
  12. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Yes she said it in relation to a small scale ongoing treatment study - unsubstantiated as are a number of Mikovits 'convienent' pronouncements. Really it just showed how little Mikovits, Lombardi etc had considered the overall characteristics of M.E/CFS before embarking on the XMRV work. A simple question of 'why is XMRV likely related to M.E/CFS ?' needed answering before bloods were taken and the results published - not muddled through in the aftermath with ad hoc justifications trolled out to answer the very obvious gaps in the hypothesis of a connection between M.E/CFS and XMRV.

    IVI
  13. redo

    redo Senior Member

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    I appreciate that you're spending time here IVI. Without difference of opinion a forum loses much of it's value. So thanks for contributing to that.

    About different genders' immune systems responding differently to various infections, I have always seen that as mainstream. And an important reason why there are some "women's diseases" and some men's. The variations on how the immune system works, gender wise, is extra evident in auto immune diseases. Do you think differently about that?
  14. SOC

    SOC Moderator and Senior Member

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    Ecoclimber, you and all other objective scientists (that should be an oxymoron, but isn't) should understand that there are always vocal fringe elements in any group. If legitimate researchers were "mocked, ridiculed, defamed, libeled" by patients, it was not by the majority of the patient population. However, if you hang around the metaphorical soapbox preachers you are going to hear much more radical, and often absurd, rhetoric. The majority of the population tends to be much more moderate and thoughtful. Look for it and you'll see it.

    It is not the fault of the patient population as a whole that certain "scientists" involved in the field of ME/CFS research have deliberately (and incorrectly) incorporated people with mental illness into our patient cohort, thereby distorting much of the data and probably diluting the voice of the majority of the patients with true neurological and/or immune illness.

    We are a patient population who has been "mocked, ridiculed, defamed, and libeled" to a much greater extent and in much more damaging ways than any researcher in this field has. If you and other retrovirologists (and psychiatrists/psychologists) are upset about the kind of mistreatment you have received from a very few people in very limited environments, take a moment to think about how much patients have been treated with scorn, ridicule, insults, and physical abuse on a daily basis. Yes, some people have become very angry, and possibly a bit irrational, because of it, but not the majority of us.

    As a former researcher, I agree that Dr Mikovitz has acted outside currently acceptable scientific practice. To a large extent, I wish she hadn't. However, she has done a number of extremely important things for ME patients that we will not forget. Dr Mikovitz believed us when the majority of virologists were, at best, ignoring us and at worst mocking, ridiculing, and defaming us. We are very sick people and she put her heart and soul into helping us when no one else would. She brought the attention of the virology world to us. She showed them that we are very sick people who deserve the help the rest of virology wasn't willing to give us. Are you surprised that she has the loyalty of patients? Or that some patients will defend her when they perceive she is being attacked? It may not be a scientific position, but as with the population in general, most of us are not scientists.

    I accept the results of the BWG. I also understand that, like all studies, it has its limits. XMRV does indeed appear to be dead. It's not a certainty, but the likelihood of it being the cause of our illness is very small.

    However, I also choose not to extrapolate beyond the data. The BWG study does not in any way eliminate the possibility of another retrovirus, nor does it (as far as I can tell) completely eliminate the possibility that WPI found something, even if it wasn't XMRV specifically. That is yet to be determined. So we've most probably eliminated one specific pathogen of very many that still need to be investigated.

    As a former researcher, I understand that Dr Mikovitz's rhetoric gets on the nerves of her colleagues. It would have probably gotten on my nerves, too, if she was in my field.

    But while she is the only retrovirologist willing to speak up for us and one of very, very few eager to put in a serious effort to investigate the possibility of any pathogen as the cause of our illness, she is going to have the devotion of the patient community, scientifically-based or not.

    Medical science, up to a couple of years ago, failed us dismally. Dr M gave us hope that medical science would finally put some effort into helping us instead of ridiculing us. We take our champions where we find them, flaws and all. I sincerely hope, now that Dr M has opened the eyes of the medical research world, that we will have more champions with a variety talents and skills. But I doubt any of them will be without flaws. ;)

    Fine. I hope that now that you've made that definitive statement, you and other virologists are devoting your time and energy into finding out what is infecting us.
  15. oceanblue

    oceanblue Senior Member

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    Here's a recent study from the Uk finding 80% females in CCC CFS cases. I've never seen any published data with a 50/50 split, but an awful lot of studies with upwards of 70/30 female/male. There are lots of diseases - MS is one example - with strong gender splits; I'm surprised this distinctive aspect of ME hasn't received more attention.
  16. Tristen

    Tristen Senior Member

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    Your being quite forgiving of the actual magnitude of influence and damage done by a small group of people. They have caused a great division within the community. I've seen many in the community get on board with the vitriol directed undeservedly at some of our top researchers and doctors. I've heard from objective and qualified sources looking at it from the outside, who say it appears to be calculated and deliberate. Whatever. I don't care about motives. I only care to do my part for the betterment of our community, which is to share as productively as possible, and not feed the negativity.

    I stand with Dr Judy and WPI, and that includes acknowledging their mistakes. I support Simmaron and Dr P. I support the new CFI veture. I support Dr Klimas, Cheney, Bell, Hyde, and all the doctors and researchers who have sacrificed and given so much to helping us escape this nightmare.

    I'm most interested in giving and receiving information that will help improve my health sooner, rather than later. Lots of that kind of networking on this forum. I've made significant improvements following advice learned on this forum. I hope to be as helpful to others. I'm also interested in analyzing the science, but I quickly lose interest when it becomes more about the problem than the solution, more about personalities than principals. I'm more into sharing and supporting each other in what will get us through.
  17. leela

    leela Slow But Hopeful

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    Yes, Tristen, thank you. It is always useful to emphasize solution-oriented thinking, speech, and action :)
  18. asleep

    asleep Senior Member

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    Those are extraordinarily vague statements from the BWG. Why not provide a precise breakdown or chart of what labs tested what controls with what methods?

    If the WPI were only given a couple control samples which they signed off on (and therefore had little overall say in the negativity of the control group), the BWG could still make the following statements (which you bolded) and be semantically correct. I've included in brackets the hidden implications that drastically alter the meaning of these claims:

    The issue again, is details. But instead of details in this regard, the BWG offered us only vague, equivocal statements that could cover a wide range of scenarios. Your assertion that "At any rate, the WPI agreed that the controls were negative before they were blinded" is a reinterpretation of these vague statements that lends them even more power. This part of the BWG paper reads like a political press release, and that alone should raise questions about why the precise details of this process were omitted.
  19. oceanblue

    oceanblue Senior Member

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    I've gave an example of a large study using the Canadian criteria with an 80/20 split, but there are many more with similar ratios using Fukuda criteria (obviously studies using Oxford criteria or the Empirical ones don't tell us much). This is surely more than anecdotal. I don't know of any published studies with a 50/50 split, do you?

    You're quite right that some people like Simon Wessely have focused on the female bias and tried to put a psychological interpretation it, but that doesn't mean we should ignore the evidence of gender difference. More to the point, I think that with psychological illnesses the female bias is lower, round the 60/40 mark, so the higher still bias in ME argues against a simple psychological interpretation. The strong preponderence of women is probably one of the most reproducible features of this illness - it might be an important clue and I think we should pay attention.
  20. currer

    currer Senior Member

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    Hi
    Women are more prone to auto-immune states than men.

    The difference is due to the hormonal influence on the immune system (I think) and explains why there is a sex imbalance between the numbers of women and men affected in diseases like ME, MS, lupus, thyroiditis,

    I dont remember the statement about the sex balance being equal attributed to Dr Mikovits by IVI.
    However I do remember that the WPI were thinking that the numbers affected by HGRVs would not show a sex imbalance (obviously this would be 50-50) but that the DISEASE STATES could be different, ie men could develop prostate cancer or parkinsons and women ME.

    This has in fact happened in my family, where my sister and I (Both F) have long term ME and our brother has parkinsons.
    (It might in fact be protective to develop a good immune reaction and end up with ME. Males may be at much greater risk of developing other neuro-immune diseases like parkinsons. Autism has a sex imbalance the other way round, it is 10-1 male to female.)



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