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What will you do if XMRV turns out not to be the answer?

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Snow Leopard, Apr 9, 2011.

  1. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    What will you do if XMRV turns out not to be the answer?

    It seems to me that many are too emotionally invested in just a single horse in the race. Now admittedly it has been the most exciting horse to come along in a long time. That doesn't however mean it is the only horse, nor the one most likely to finish.

    The fact is that the scientific association of XMRV with human disease is becoming increasingly questionable and it is important that if it doesn't turn out to be the answer, that we move on and support whatever new research is being done.

    One thing that has worried me in recent times is that we have over-concentrated on awareness of XMRV, when we should have concentrated, or at least combined it with the fact that CFS is under-researched by the NIH (which is also representative of spending in Western countries) 20-50 times compared to the actual impact of other diseases, both in terms of economics and quality of life.
  2. Jemal

    Jemal Senior Member

    What will I do? Live on :D

    XMRV still looks like the best horse to bet on, though. Or at least I think so.
  3. JPV

    JPV ɹǝqɯǝɯ ɹoıuǝs

    I'm not wasting any of my time concerning myself with XMRV research, which is indeed getting more and more questionable all the time. I'm working on my diet and employing Freddd's methylation protocol, which holds great promise.

    I think that most of the people around here are far more interested in having proof of a "real" illness, so they can use it as vindication against all those that tell them that it's "all in their head", than they are with putting in the hard work that it takes to get better.
  4. Waverunner

    Waverunner Senior Member

    What do you mean by hard work to get better?
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    cfs shows immune abnormalities like nk dysfunction, auto immune, loss of antibodies to certain infections in some, increases in rnase, cytokine abnormalities, lymphocyte abnormalities and the list go's on, there some underlying immune disturbance, be it another retrovirus, immune defiecency or another unknown infection etc. The evidence is there, we just have to find it. Klimas has all the evidence but just cant find the bloody culprit. A retrovirus seems the most likely though. maybe its a hit and run problem. But depression it is not, maybe a symptom of frustration which is common in most chronic conditions. We just have to keep looking. If ampligen can help and cetain antivirals and arv's then we need to work backwards from this and find out how they are working. I agree with mikovits that we also need to start treatment trials as well, matching treatment to certain biomarkers.

    Personally i would like to put the chicks in a room together, klimas and mikovits together with montoya and lerner, peterson and cheney with 2 days worth of grogg to sit down and nut things out and then sober up and with an unlimited budget and 12 months to just go for it and work this think out. I reckon we would have it all solved and be cured, shuff the politics where it fits and things will get done. Maybe throw that kiwi guy in that found a retro virus in cfs in the early 80's and elaine can sit in the back ground. What more do we need.

  6. Boule de feu

    Boule de feu Senior Member

    Ottawa, Canada
    Could you name other diseases that need hard work to get better? Both my parents are dying from cancer right now and besides getting chemo (in one case), they are not working hard at getting better. At least, I don't think so.

    I'm afraid I don't understand your comment.
  7. JPV

    JPV ɹǝqɯǝɯ ɹoıuǝs

    Sorry to hear about your parents, but I really don't have a clue as to what sort of point you're trying to make here. There are countless therapists that believe that dietary, nutritional and life style changes can help cancer victims. I know people that have put their cancer in remission by going on specific diets. Same for diabetes and countless other diseases.
  8. ukxmrv

    ukxmrv Senior Member

    I'll move on to the next idea - as I have been for nearly 3 decades.

    Worrying about my or our group emotional "investedness" in XMRV is nothing compared to worrying about spending an entire lifetime as sick as I am and have been. That's what is important.

    Lets get things into perspective here.
  9. pamb

    pamb Senior Member

    Edmonton, AB, Canada
    If XMRV is not the 'puppet master' so to speak, then I remain very hopeful that all the research showing so many other co-infections (co with each other if not with XMRV) will result in tests and biomarkers that will help us know what 'flavor' of ME/CFS my husband has so we can treat symptoms with a little more confidence of success. And of course it would be great if XMRV is the puppet master and learning how to control it will make everything else we do more effective.

    JPV, I understand your perception that some are waiting for the magic bullet to make it all go away. However there is a different perspective on it.

    I come with a ten years of experience, all pretty typical, trying to help my husband. He has gamely tried so many different protocols, all of which made him feel worse for awhile, sometimes very much worse, and some of which made him a bit better for awhile, but so far no significant improvements.

    Though one fears to add it up, I know we've spent nearly $100,00 now on Dr's, clinics, travel to clinics and expensive supplements, IV and otherwise, not to mention my lack of income while spending so much time researching and advocating. There is no pension fund left, no cushion and only prayer to stay afloat month to month. We are in France so have free healthcare - but their solution for ME/XMRV is all psychiatric and the British approach of no testing to perhaps treat the many symptoms one at a time.

    We are now out of $$ to have any more diagnostics, there are so many things that 'might' work, but then again, maybe not on his phenotype, and John is exhausted from trying things that are not easy to do and make him feel worse. I don't blame him for now just wanting to be in a holding pattern, until he can have more confidence the 'next big idea' will be right for him.

    In the meantime, of course we adjust diet and are inching ever closer to a full paleo diet, and his biggest change has come from finally stopping the fight and learning to listen to the wild snail eating a bit more. And yes, we are investing in all the supplements that seem to be on the most likely to help list. Not much progress with full B vitamins as we'd like unfortunately, as he reacts so badly. Maybe in a year he'll have the mental strength to try again. In the meantime he takes the B's he can tolerate.

    We've been doing the work for 10 years. We're exhausted and broke. We'll try again when science catches up and John can have more confidence their will be some gain from the pain.
  10. Waverunner

    Waverunner Senior Member

    Personal anecdotes are great. I know lots of cancer patients who give all kinds of diets a try and the more they believe in it the more it seems to help. You still didn't make any point about CFS.
  11. Timaca

    Timaca Senior Member

    In me we've seen (by labs and symptoms) that Coxsackie B3 and B4 are major factors. And likely HHV-6, HSV1 and Cpn. I'm not even concerned about XMRV at this stage, for I have too many other pathogens that we are dealing with. For more info see the infections tab:

    Best, Timaca
  12. Sing

    Sing Senior Member

    New England
    I am touched by what Boule de feu and pamb shared about the extreme struggles going on in their lives and with their families. Here is what it is all about and why we need real help soon.
  13. insearchof

    insearchof Senior Member

    Hello Snow Leopard

    It is not that people are too emotionally invested in a single horse race as you put it Snow Leopard......- people are emotional because certain punters want to drag the punting paty back to the betting ring, before the horse race is even finished.

    Is it unreasonable to allow science the opportunity to fully and throughly explore all the questions that have been raised and remain unanswered that XMRV has generated? I think not. Would you label Nancy Klimas as ''too emotionally invested'' in a single horse race - for wanting the same thing? I doubt it - so why would you attempt to do that to those of us here?

    Your use and employment of the term ''too emotionally invested'' comes across as arrogant and derogatory. Can I ask you, ''too emotionally invested'' by who's standards?

    And how can you make an assessment (implied by use of the terms too...invested) that individuals have an attachment to any outcome with respect to XMRV? What are you basing that on? How well do you know the people your making this subjective observation of, and how they feel and or what they have going on with their health or lives? Obviously not well enough, otherwise there would have been no need to raise this question/start this thread.

    Correction - fact is something that is not in contention. The assertion you make is not fact - as it is contentious and has been strongly debated in a number of threads here. Have you not read them?

    If XMRV is disproven - maybe then we can turn our minds and minimal resources (which you seem to have forgotten about) to support other research as heavily....but to do so before hand would be doing a great dis service to the community and is very premature - as is this thread. IMO.

    It seems you have some fear based XMRV associated thoughts which is understandable, but please deal with them - rather than attempting to dismantle or undermine support for this area of research by starting threads such as this and using the terminology and statements that you have.

    If you dont see it as worthy of your support then fine - move on and use your own resources to start to foster support for other areas - but please do not shoot down those of us who wish to push this forward or pass off your questionable opinion as fact, and dampen the enthusiasm of others in the process.

    Please remember, that if XMRV does not pan out, and your looking to support some other resarch or advocacy endeavour - your going to need our support.

  14. Jimk


    Cleveland, Ohio
    Horse Pucky

    ISO- Well, this is certainly helpful of you. Nice that you are qualified to diagnose questioning of the XMRV as "fear based XMRV associated thoughts..." Gee, where have we've seen the dismissal of people by invoking psychological diagnosis before? Oh yes, the CDC...

    And if that doesn't work, by all means, let's threaten Snow Leopard (and I assume any of us who express concerns) with loss of community support for daring to "shoot down those of us who wish to push this forward...?" Do you feel "shot down ISO?" Maybe you should get over such insecurity. That's a joke. Really.

    It's legitimate for any of us to ask questions and express fears here as far as I'm concerned. Raising the question and expressing doubts or concerns does not imply anyone is "undermining support" for this direction of research. As you point out, I've read many a forum post arguing the issue here.

    There truly are a lot of us emotionally invested in the outcome of this. I know I am. And apparently you are, ISO, as well or you wouldn't feel the threat of demoralization from Snow Leopards question. That I'm emotionally invested doesn't mean I don't know the difference between my own hopes and hard reality. I've certainly had enough of the latter with this illness that I hold my emotional investment carefully, as perhaps a lot of us are doing as we follow this research. If we can't air fears, concerns and questions here then where? It doesn't make any of us John Coffin to do so.

    I've been through 30+ years of wrong and partial answers. Though I'm betting on Mikovits horse myself, that's from horse sense not religion.

    A few answers to Snow Leopard's original question:
    If it doesn't turn out to be XMRV or some other retrovirus,
    a) a host of research is spilling out of this that will push things forward-- cytokine profiles, common factors, potential biomarkers, and more;
    b) We've had more light turned on CFS/ME than we've had in 30 years, and high-level researchers have been pulled in, some of whom are having their eyes opened about how devastating this illness is;
    c) It's becoming a field where legitimate hard-science researchers can actually investigate without ruining their careers;
    d) The moribund, so-called "advocate organizations" are getting outted as ineffectual and enslaved to the status quo, and new advocacy organizations are emerging that may be more likely to kick ass and take names rather than mis-spend funds.

    These are just a few. My enthusiasm is un-dampened, even if my logic be all wet.
  15. Navid

    Navid Senior Member

    hi timica:

    i just got my latest round of virla tests back and am positive for the are you treating this. i too see dr montoya, you can pm or email me of more comfortable.

    tx, lisa
  16. floydguy

    floydguy Senior Member

    As I am not taking ARVs at the moment, nothing will change. I continue to try to strengthen my immune system, focus on my diet, avoid mold/chemicals and other environmental crap and get rid of known pathogens. I find XMRV and related very interesting and want to see this intensively researched and not pushed to the side by John Coffin or Greg Towers.

    All one can do is focus on what is known and to not do anything that might make things worse, ie first do no harm.

    At this point, I believe it's probably premature to sit back and wait for the magic combination of ARVs to be handed down from WPI or elsewhere. However, I am all for people who feel differently and want to try them. I salute those who want to lead the way and take the risks for the benefit of others who may follow.
  17. SOC

    SOC Senior Member

    Are you always this self-righteous?

    I don't see how anyone reading these forums can believe that the members here aren't "putting in the hard work it takes to get better". There are reams upon reams of posts about people making dietary alterations, lifestyle alterations, fighting known infections (enteroviruses, herpesviruses, coxsackii, lyme, etc), and seeking new medications (not arvs). Where do you get this crazy idea that people aren't working hard right this minute in all kinds of ways?

    As for Snow Leopard's question: Jimk expressed my thinking exactly.
    Frankly, I'd be just as happy to find I don't have a retrovirus. Nevertheless, the science sure seems to be pointing to one, whether it's XMRV or some other HGRV. If it's not a retrovirus, fine; we keep looking. We've got a lot of new clues in the last 18 months, so I'm not worrying. :D
  18. insearchof

    insearchof Senior Member

    Pony up Cowboy and ride off

    Jim K

    Is it? Its about as helpful as your response that wasnt directed at you.

    However, as you have weighed in here Jimk it is one thing to say people have an emotional investment in a matter quite another to say people have too much of an emotional investment quite judgmental and a psychological dismissal of people right off the bat. Which was the very point of the post which you missed. I agree with you its not nice.

    I absolutely agree with that it is legitimate for us to express fears but it is the manner in which it is done.

    Emotional investment in the outcome is fine being emotional is equally fine -however you have missed the point. It is the suggestion that people are too much so a judgment- and the immediate suggestion that persons look further a field invest in broader causes (ie their own political agenda) under the guise of concern for individuals who are ''too'' emotionally though somehow, this would be better for them.

    Those making this judgment may well be concerned certainly for their fears of possible missed opportunities elsewhere as well as for others. However, when it comes to others they would do well to look after themselves first, rather than adopt a paternalistic judgmental stance.

    Raising questions and expressing fears does not imply anyone is undermining support in and of itself, I agree. It is how it is done and the context in which it is arises.


    I am emotionally invested in the outcome but not for the same reasons that you may be. An emotional investment in this is fine, being emotional - is also fine by me - we are after all alive and an emotional investment in our lives and emotional expression signifies that we are not yet dead.

    What I feel however, has less to do with the nature of the question and more to do with the political landscape in our country on this matter - (which snow leopard is aware) which you would have little direct knowledge of, and or involvement in.

  19. ixchelkali

    ixchelkali Senior Member

    Long Beach, CA
    I don't know. I expect I will keep on pushing for good research, looking for biomarkers, campaigning for education of doctors and the public, trying to support people who are dealing with the disease, trying to raise funds. At the same time, I'll keep living my life, enjoying it as much as I can, following promising research, and sorting through it all for clues as to what I can do to improve my health and functioning, with precious little support from the medical establishment. And hoping, always hoping. In other words, pretty much the same thing I'm doing while we wait for the science of XMRV to be sorted out.

    We have patients around here who have been sick for 25 years and more. There have been other promising leads in that time (although perhaps none that seem to explain the constellation of symptoms as well as a retrovirus), and yet the patients have shouldered their disappointment and kept going. We are strong people; we've had to be. I hope that I'll live up to the example of the patients who have kept fighting, kept pressing on, and kept hoping. As my signature says "Keep on walking forward, never turning back."
  20. Andrew

    Andrew Senior Member

    Los Angeles, USA
    If it doesn't work out, my hope is that patients don't turn their backs on WPI. I hope WPI continues to research and I hope the New Jersey center becomes a reality.

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