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A Moment of Reflection: Please Read!

Discussion in 'XMRV Testing, Treatment and Transmission' started by Ecoclimber, Jun 5, 2010.

  1. vdt33

    vdt33

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    Where Are the Moderators?

    When I started reading this thread this afternoon, I went straight thru the roof after about 4 paragraphs. It wasn't what was said but the way it was said that was so inciting.

    I have been sick a very long time, and I *know* that I am dying. And I think I have the right to fight for my life in any way I think best. I can't wait another 5 or 10 years while the insurance companies and the government use every delaying tactic in their huge book of delaying tactics to put off having to pick up the tab for 30 years of neglect of people with ME.

    Nor will I listen to biased researchers or researchers who have little or no expertise about Gamma Retroviruses pass judgment on those who do have that expertise.

    I don't need anybody to preach to me. I've heard it all and been thru it all!

    vdt
  2. Frickly

    Frickly Senior Member

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    Ecoclimber,

    Sorry can't read this whole thread now but just want to say that I would never describe all the science coming out about XMRV "HYPE". Also, I appreciate your concern for my well being but I am not that delicate. I can make my own health decisions. Thank you very much.
  3. Mark

    Mark Acting CEO

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    I agree with DysautonomiaXMRV's post #20 on all points.

    Since October we have been discussing XMRV here on a "what if?" basis, and that's precisely why this forum's archive contains such an extraordinary wealth of information on that subject. At the very least, a large proportion of the most committed members who discussed and researched XMRV in some depth at that time (sharing Retrovirology 101 resources etc and analysing every detail of every public prouncement in forensic detail) came to the conclusion that the WPI's research simply has to be ground-breaking and hugely significant.

    Many of us, highly intelligent and in some cases relevantly-trained ME/CFS patients, tried as hard as we could, together, to find a reasonable way to doubt the fundamental significance of XMRV for an understanding of ME/CFS, and we just couldn't - and still can't - see any kind of legitimate theory that undermines that conviction.

    It's part of the communal history of this forum that as a community, we looked into XMRV openly and honestly together in extraordinary depth, and related it to everything we already know as a community about our own experience and the known science, and we joined all these pieces up, that previously had seemed so disparate, and learned how they can all fit together once we add to the jigsaw that missing piece of XMRV.

    It may indeed be true that the compelling picture that emerges from this consideration of the detailed research, is a communal self-deception, but if it is so then it is because we have chosen to ask right away "What If This (XMRV) Is True?". As such, as a community, we are experts in the answers to that question - and the further questions that are then raised...

    And yet the obvious and crucial follow-up research (I can think of 3 small, quick, crucial studies that could easily be run in a couple of months if the will existed), that was urgently suggested both by us and by simple reason in October, has still not taken place and has not been announced or discussed. Something is very wrong with "the system" if all this strange behaviour is "just the way things work".

    A large number of us love to speculate. In a highly informed way, together, in a friendly and supportive spirit, as a wide and diverse community of ME patients, bringing our own patient experiences into the scientific equation in a new way, and also sharing our emotions as the truth unfolds, fully aware that we are speculating publicly together.

    We know it may have some bad consequences for us, but we know it has so far had some very good consequences as well, and we enjoy speculating (if that's the right and fair word for what we're doing) and I expect we will continue to do so.

    I think some people look at this forum and expect it to be like a science forum in terms of the rules of debate, whereas it has always been a place that's been very open to all kinds of contrbutions from all kinds of people, and that has made it an extremely creative environment.

    Having said all that.....Ecoclimber I want to thank you for all the work that you do, it sounds like you make an extraordinary contribution and I'm quite sure that there are many people like you who work very hard - and effectively - on our behalf, largely unseen and with little thanks. Your wish for caution and conservatism in reacting to the scientific news is entirely understandable and probably very wise. There is more to ME/CFS than XMRV (like mold and EBV) and I think that's widely understood. But...

    But in the end, some key points seem worth repeating again.

    The WPI have not argued that XMRV is straightforwardly causal for all ME/CFS, and they have not been irresponsible in over-hyping their findings. It seems very strange that these allegations keep being repeated, and like all the other oft-repeated questions/slurs, rarely if ever with supporting quotes (which would, incidentally, have to be drawn from public statements which we have archived here long ago as we pored over every detail of every jot of information we could get our hands on).

    We have seen this pattern before, where an honest researcher uncovers an inconvenient truth, soberly reports their findings, sees a press furore unfold which transforms into a storm, and the researcher is then blamed themselves for over-hyping the news. It appears to be an instinctive reflex of government to react in this way - like people, organisations can also tend to "shoot the messenger" - but that reactionary instinct is eventually replaced by a more progressive plan once sufficient pressure has been applied.

    The WPI may have taken an unconventional approach in some respects: they are a small and new independent lab, collaborating with world-leading researchers in a variety of disciplines, and as a small-scale operation they perhaps seem very peculiar to the giants of medicine. But as people who ourselves seem very peculiar ('bizarre', 'impossible') to the same sort of conservatively-minded authorities, we are accustomed to that sort of reaction.

    The apparent strangeness of the WPI to the giants of medicine who didn't find the XMRV-CFS connection themselves, concerns me far, far less than the apparent strangeness of the extraordinarily rapid success of several groups of researchers in beating the world by many months in the attempt to replicate the WPI's findings (by a different and unproven detection method), failing to find the retrovirus XMRV in anybody at all, and then speculating in the press that this might well mean the virus isn't present in Europe (rather than wondering whether maybe their test just didn't work).

    It has to be said that all this and more is fairly plain, and that it's therefore not surprising that people continue to point out the apparent failure of some patients advocates to strongly and publicly stress the glaring flaws in the logic and methodology of those who produced the 3 failed studies.
  4. HopingSince88

    HopingSince88 Senior Member

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    This thread has raised some interesting things. But what interests me most is that post #1, which started it all, has been editted. There are at least 2 statements that i recall, which are now missing. One statement made reference to the author being in contact with a whole host of characthers...WPI, Mikovits, etc.... The 2nd statement that is missing had to do with a complaint that it was not easy to fundraise for research.

    Do I remember this correctly? I am wondering why these comments were deleted.
  5. Yes HopingSince88, those two comments have indeed been removed.
  6. Doogle

    Doogle Senior Member

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    I think you are remembering Ecoclimber's 04:09 AM post.

  7. lansbergen

    lansbergen Senior Member

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    I think the first statement is in post nr 4
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    FWIW- I think this disease is very probably (95%++ chance) caused (at least in major part) by a retrovirus; this disease just fits so well with what RVs do (including the association with previously vanishingly rare lymphomas), plus there is all the evidence of RVs since the 1980's including Holmes, DeFreitas, Grossberg, etc., not to mention WPI, NCI & CC! The most likely candidate is obviously XMRV and I think DeFreitas' retrovirus is probably also involved and maybe others known and unknown.

    Anyway, I think it's counterproductive for you, Ecoclimber, to tell us here and elsewhere to tone it down, or not fan the controversy. I actually think it's silly to go back and forth with people like you, Esther12, Cort etc. about whether we should be criticizing or not. It is obvious to me and most others that we need to all be banding together to criticize the 'evil-doers' or we will never get help!

    I guess I'm saying I, personally want to devote my energies more toward other activities and imo it would help us if everyone could band together and 'call out' the bad science and do other lobbying and awareness spreading rather than debating if we are being nice enough or sticking too much with WPI or defending the good XMRV science too much. Obviously you, Cort, Esther etc will disagree and we will have to agree to disagree.

    re: failure to confirm-
    It is the scientific protocol that scientists wait for replication and validation studies before saying that a finding is valid. Generally this is a good idea. However, this is just a protocol, a convention. Saying that we don't have credible evidence of the XMRV - ME association, or that we don't know if they are associated just because we don't have a second study, strikes me as illogical.

    It is like saying we can't form any conclusions about whether OJ was associated with his wife's murder because the jury didn't find him guilty. I was not an OJ trial watcher, but I give credence to the opinions of all those people who's hobby it was to watch the trial week in week out. Many of them say there is no question to them that OJ did it and i think they're right. The verdict is the official protocol that our government and legal community uses to assign guilt and punishment, but like the insistence on a second study, it is just a protocol or convention. The 'not guilty' verdict does not mean that it is certain OJ is in fact innocent. The map is not the terrain. The finger pointing to the moon is not the moon.

    We can evaluate the evidence on it's merits in the absence of a second study. And it's pretty much an open and shut case. I conclude there is an association and the present evidence is more than enough to mandate monster NIH funding of XMRV in ME (and related, eg DeFreitas retrovirus, etc) research, for the govt to ban ME blood donors and to alert the public that there is a very good chance ME is caused by a retrovirus.

    I think the chance of there being a strong association is 99.9%+. sure, it's possible that wessely etc are right and xmrv is not associated with ME, but the chance is very improbable imo. I don't need another study, so i'm not being quiet until there is one. there are too many people suffering!
  9. sunlady

    sunlady Guest

    I want to say that I totally agree with Mithriel, Dysautonomia and others that have written in opposition to the comments made in post 1.

    You have had this disease for 6 years, what is that in comparison to those, like myself, who have had this disease for more than 35 years.

    It is my whole life!!! I was 19 years old when this nightmare hit me, never ill before, fit and healthy, a glittering academic and purposeful career ahead of me, snatched in an instant, by this living hell which doesn't even have a proper name. Not only that, but I appear to have passed it on to both my children, one of whom has ME, both of whom have Autism.

    I have waited all this time for someone to help me, where were they? No where I could see. The only hope was briefly, Elaine De Freitas, and she disappeared without trace, after being savaged by the CDC and others.

    Your reading of the situation regarding the WPI is prejudicial in the extreme. Their science was exemplary; why have there been no follow up studies with a discovery which is so important?

    Given the history of ME/CFS, as told in Osler's Web, is it any wonder that so many ME/CFS's are worried that the findings printed in Science, which we consider to be so important, are being sidelined and marginalised.

    Reading your post made me so angry, it had the sanctimonious tone of Susan Vernon, who I do not believe is doing everything she ought to be doing to find the answer to ME. This is about our lives, which have been destroyed by this vile illness, some of us have no time left to wait.

    Of course people are hopeful, we don't care if we have a retrovirus, we just want answers and, hopefully, a solution to this terrible illness which has caused such devastation in our lives and which has been minimised for such a very long time.

    With all your contacts you should be fighting for greater funding into the causes of ME/CFS not attacking the seriously ill and desperate members of this forum.
  10. Cort

    Cort Phoenix Rising Founder

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    Whoa! Gotta disagree with this one. I don't wish to call out 'bad science'? You really put some words in my mouth there. My comments on Dr. Vernon's paper were entirely designed to try and bring us together to recognize some good science that is going on.

    I think ecoclimber was really disappointed, given talk that 95% of patients would test positive, that he - as sick as he was - tested negative. It appears that number is not going to hold up. I think it was probably a case of everyone getting too excited about XMRV early on - an honest no more, I can't imagine what else it could be. XRMV may very well turn out to be a major factor or the major factor for many patients - thats for sure - but it also looks like its not going to that way for at least a chunk of patients. That will inevitably leave some people, at least temporarily, very frustrated.

    I think some disappointment is natural. Eco may have put his very bluntly :) but I think its only natural that it happened. I agree that the hype button was pressed a bit much and he got too forceful in the second post (that banning idea went a bit too far@) but what he describes is how science works.

    As good as a paper is it only really means something when its been validated by outside researchers. Everything rests on that validation paper; hopefully that will come along soon. I'm going to remain hopeful and cautious at the same time and when it comes, if it comes, I'll be as happy as can be. As Dr. Vernon noted it would change everything - it would make a huge difference in how this disease is viewed. I can feel a little tingle just thinking about it. :).. but alas, it has not happened yet.
  11. dannybex

    dannybex Senior Member

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    Jeez...I'm probably the only person who agrees with EcoClimber AND Dysautonomia, Justin, etc.. At least with some of the things each person said. :)

    I keep coming back to the fact (based on the original study) that approximately 10 million healthy people in the US have XMRV. They're not sick with ME/CFS...they may get sick, but it's also very, very possible that they may never develop ME/CFS.

    So IMHO, XMRV may indeed play a role, or in fact play a huge role in many cases, but I believe there are probably other triggers -- infections, environmental exposures, gut dysbiosis, long-term stressors, and even simple things like dietary changes and prolonged vitamin d deficiencies (very common) -- that are also involved.

    d.

    p.s. I also know people who have recovered, people who are improving, and have read the interview w/Klimas where she talks about patients who have recovered completely...all before the XMRV discovery. Plus, there are people on this forum talking about their recoveries and improvements. As we wait for more XMRV news, I hope that more folks will peruse those threads.
  12. sunlady

    sunlady Guest

    You make some interesting points. I am someone who recovered for 8.5 years by fighting fungal overgrowth etc, but it did not hold the illness at bay for ever. Even in recovery I had carpal tunnel syndrome, bursitis and two children with Autism, then ME/CFS returned.

    This is a multi faceted illness and needs to be rigorously studied. There are, I am certain, many co factors involved with this illness but what we all need is properly funded, thorough scientific research. We deserve no less, neither does the population at large. We have an epidemic of both Autism and ME/CFS: it seems highly probable that there is a link between these two conditions given the number of mothers with ME/CFS who have children with Autism.

    This illness needs to be taken seriously and to be properly investigated, not marginalised by people claiming it is in our heads. There are more than 5000 papers showing that there are physical causes for our condition, why are our governments not taking more cognisance of these facts?
  13. Hope123

    Hope123 Senior Member

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    Well, Ecoclimber has a point with what he/she? wrote although the tone of what is written is always difficult to gauge on the net.

    People are on a spectrum of thoughts about XMRV and we should try to respect that. Some people do tend to get very emotional about the issue and I can respect that but when I personally do, I take a step back and ask myself to try to look at the situation as objectively as possible. Ecco, there is no need to accuse docs who are prescribing antiretrovirals of being irresponsible; some are responsible docs and the laws provide some leeway for docs to prescibe what they feel might work. Wildaisy, there is no need to question how long Ecco has been sick or how he/she has been treated in the past. Ok, I'm going to step back now before I get flamed!
  14. Doogle

    Doogle Senior Member

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    Hi,
    I would like to know more about the CDC now recruiting for CFS patients for treatment on Ampligen.

    Thanks.
  15. Robyn

    Robyn *****

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    Just to point out the FDA allow experimentation on us all the time with various medicines, additives, and chemicals in just about everything with their seal of approval. For this reason people should be allowed experimental treatments at their own risk. Should they so choose. Especially when they have no test, treatment or cure. Or any form of a life year after year after year. They have been doing it for years on other conditions. My father has a brain stimulator to prove it and was brain damaged when it scratched his brain during surgery. This was experimental and at his own risk. He signed a waiver. For many others the procedure helps but is not a cure for parkinsons. At least he had a right to choose. We should have that same rights on how we wish to continue with our lives. Why don't we?
  16. ixchelkali

    ixchelkali Senior Member

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    Just a little factual correction. It does NOT violate FDA rules for physicians to prescribe a drug that has been approved by the FDA for an off-label use.
    "It is important to recognize that FDA cannot approve or disapprove physician prescribing practices of legally marketed drugs. FDA does regulate what manufacturers may recommend about uses in their products labeling and what manufacturers can include in advertising and promotion. The sometimes-used term unapproved use is a misnomer, implying that FDA regulates prescribing and dispensing activities. This term should be avoided. Use of approved drugs for unlabeled indications. FDA Drug Bull. 1982; 12:45.
    Isn't 'HYPE' a rather loaded term? One could call it enthusiasm.

    Of course it has no validity in factual research results, but this forum isn't research. It isn't a science forum. It's a patient support forum. Personally, I enjoy the speculation (although I know some don't). If it raises my hopes, isn't that my prerogative? Hope is not necessarily a bad thing. And who says the expectations are false? Maybe they're false, maybe they're not.

    I think that's more than a little extreme. Even the BMJ doesn't do that. :innocent1: As I said, this is a patient support group. If I want to speculate, without verification, that the muscle tics I get are part of this disease, I should be able to. If I want to speculate that the mitochondria must be effected, I should be able to. And if I want to speculate that a retrovirus may be deregulating my immune system and allowing other pathogens to proliferate, I should be allowed to. At least, that's my opinion. I think that if you ban everyone who speculates from a patient forum, it's going to be a very lonely forum.


    I have to agree with you there. I don't think people should be shouted down or attacked for expressing their opinions. I'd like to see a forum where we can debate ideas and disagree, without anyone getting attacked.

    I'm not sure whose controversial speculation and mud slingling you're refering to here. But I would be surprised to learn that what we patients say to one another here is stopping donors from funding further research. Actually, it's been my observation that historically it has been noisy, uppity patient groups that get funding for research.

    I don't mean to be jumping on you or attacking you for giving your opinion. I personally am eagerly waiting to find out what the research shows. XMRV exists. Some people are infected with it. What are the implications of that? We don't know yet. Until we do, I enjoy hanging out here with other people who are impatiently waiting. I don't want anyone to tell me that I have to believe that XMRV is THE cause of ME/CFS. I also don't want anyone to tell me that I must not believe it. I prefer to hear different viewpoints and decide for myself.
  17. Snow Leopard

    Snow Leopard Senior Member

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    This is simply not true by the way. Long term CFS causes much more damage to the economy than the costs of potential drug treatments.
  18. Snow Leopard

    Snow Leopard Senior Member

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    There was talk from WPI that using other tests as well - serology etc, the numbers were found to be as high as the 95% range.
  19. alex3619

    alex3619 Senior Member

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    About disappointment

    Hi Everyone

    This thread seems to be polarized between two views, with the occasional exception who spans these views. This posting represents my current opinion, and should not be construed as my ironclad belief.

    The first view is a concern the fear that too many of us have a belief that XMRV is the cause of CFS, which if unfounded will result in severe disappointment. This belief is fostering speculative medical treatment that could be highly damaging to patients. IMO this is not a naive or incorrect view.

    The second view is based on hope. We hope that XMRV is the cause, or part of the cause, or if not then it will lead to better funding and research that will finally lead to a cause and then treatment. To further this view we investigate, discuss, speculate and criticise every scrap of information that comes our way.

    Both of these views overlap with the debate over the science. On the one hand we have the established scientific protocols that dictate how research is done. On the other we have the very real political situation that that the scientific community and its funders have utterly failed to give this area the attention it deserves for over half a century. CFS blood donation in the USA and elsewhere is still going on, as long as we feel "well".

    Those of us who want to see established protocols adhered to have a point. Science progresses best when agreed methods are used, and is not served well when researchers use dubious methods. Funding of future research absolutely depends on this.

    On the other hand this forum is not a scientific journal. We are people who desperately seek answers, solutions, means to cope with our situation. Speculation, discussion and personal viewpoints are part of that. Advocacy is part of that - the world has ignored us for half a century, and something needs to be done. Even if XMRV has no part in causing CFS, just the attention it is generating will go a long way to make things better.

    To those few people brave or desperate enough to try experimental protocols, I want you to know that I respect what you are doing. The fastest way to get real science done, real proof of a treatment, is to have a good number of recovering people to point to and say "refute this" !

    Personally, my views span this entire spectrum.

    Here are some points about disappointment, false hope and failed treatments I would like people to think about, especially in relation to their own lives and situation.

    I am a very long term CFS patient, and probably have ME but it has never been officially diagnosed. Every day when I wake up I face disappointment - I am still sick. I faced disappointment when I tried very large numbers of unproven or experimental treatments over the last twenty-five years. I face disappointment with every time I sign up as a test subject for research into CFS and it doesn't go anywhere. I face disappointment with the realization that I have gone from 7 to 49 years of age without being very well. I face disappointment with the realization that I may never have a career, a wife, a family, that I can't get fit, go for a walk in the park or even watch a movie at a cinema. I face disappointment with the realization I have had moderate CFS since 1985, and severe since 1996. I face disappointment every time I have to talk with doctors, government officials, friends or family and face misunderstanding or outright hostility. I face disappointment with every little aspect of my life, and with how society treats us.

    Disappointment is a way of life for those with ME and CFS.

    What I can't live without is hope. Without hope I would have no meaning to life, no reason to go on living. Without hope there is no future. Trying to find out everything I can about this illness empowers me, gives me hope that I can respond intelligently when faced with a disbelieving and CFS-related-ignorant medical community. I am only one person, with limited capacity and resources. Interacting with others on this search, on this forum or elsewhere, fuels my hope.

    I can live with disappointment, I can't live without hope. If XMRV is not the cause, so be it. It is only a working hypothesis for me, however likely, and I will just move to the next hypothesis as I have done in the past. Hope is about the future, about possibility. Forum discussion is about how to find the fastest most effective path to our eventualy hope, a full cure and return to a normal life, or at least about how to cope with getting from here to there.

    Disappointment is my life, hope is my future.

    Bye
    Alex
  20. omerbasket

    omerbasket Senior Member

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    Actually, not 95%. The number is 99/101 are positive for XMRV, which means 98%.

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