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A Moment of Reflection: Please Read!

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

  1. garcia

    garcia Aristocrat Extraordinaire

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    Cort, there was no "talk that 95% of patients would test positive". There was the follow up work on the Science cohort which found 98% of patients positive for at least one of the 4 measures used by the WPI. Has ecoclimber been tested by the WPI? Was he/she tested using all 4 methods? I suspect not. In which case any reference to "95% / 98%" is completely misleading.

    The current tests are producing a lot of false negatives. We know that. I can understand ecoclimber's frustration, but that is the nature of testing for a new pathogen. These things generally proceed slowly unfortunately.

    My advice to anyone like him/her of a delicate disposition would be to hold off on testing for now until more reliable tests have been developed. Not to start threads like this one telling other people what to think (almost guaranteed to get people's backs up).
  2. omerbasket

    omerbasket Senior Member

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    What you said here, and the "Vibe" I'm getting from some of the others here and not here (like Dr. Vernon), reminds me of the following chat in "Seinfled":

    My feeling is that there is a good chance we already found the girlfriend here (XMRV), but to a person who would look from the outside it would seem that we don't want the girlfriend, we just want more girlfriends. Because an objective person from the outside would say: "Wow! A retrovirus! In 98 percent of them! As oppose to 3.7% in the general population! Before we even have the best method of testing! And some people on antiretrovirals are improving! And it fits every symptom they have! Wait a minute... They want to research for more causes? What's a bigger cause than a retrovirus? It seems to me that they don't want a cause, they just want more causes!".

    I don't say XMRV is the cause of ME/CFS. I don't say that there isn't a chance that it causes ME/CFS only if it comes together with. let's say, a herpes virus. But I'm arfraid that too many people here say: "Ah... It's not possible that we found the cause here... let's see if we have something from past research... Perhaps even those dead ends we've reached". It would seem to me that some people here, if we had another illness, AIDS, would also say: "Ah... It's not possible that HIV causes AIDS... It must be a coinfection...".

    I think we should keep it simple. We should first do everything to determine whether XMRV ois associated with ME/CFS or not. If the answer would be "Yes", we should do everything to determine whether XMRV causes ME/CFS or not. If the answer would be "Yes", we should try to find ways to fight XMRV. Only if the answer would be "No" we should start looking again at other directions.

    Ecoclimber, you talked a lot about your fears here. So I would talk about a fear of mine: I fear that we are on the verge of discovering the cause for ME/CFS and possibly other illnesses such as fibromyalgia, atuism etc. and we might look the other way and let it escape. I fear that we are in a situatuion were AIDS research was, and for some reasons, some are innocent and some aren't, we might let the HIV (which is XMRV this time) escape.

    And you know what? I have another fear. I'm a fibromyalgia patient (not an ME/CFS patient). I fear that XMRV won't be found as the cause for fibromyalgia. I'm even more arfraid that it would be found, but I'd be found negative for XMRV (because then I would be much more lonely than I'm today, when talking about patients communities). I'm definitley arfraid from the implications of being positive for a retrovirus. But whatever the truth here, I want to know it. And I'm, as I said, somewhat arfraid that we might make mistakes that would cause us to miss the truth that we might be so close to finding.
  3. redo

    redo Senior Member

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    Her name is Brigitte Huber, and she has a PhD from the Tufts University School in Massachusetts.
    She has done several studies on HERV-K18, see here pubmed search.

    As you might know, a HERV is a human endogenous retrovirus. It's triggered by other infections, and she's got a grant from the NIH to do further study on this.

    You can read more about it here: http://chronicfatigue.about.com/b/2...ronic-fatigue-syndrome-multiple-sclerosis.htm
  4. Sing

    Sing Senior Member

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    I am moved by the truthful self disclosure on this thread! Whether individuals here agree or disagree on some points is all of interest to me, as I am also trying to follow "the ball" closely--that is, what the science shows or implies, etc. But most of all, I am caring and appreciating the candor, expressed at some cost of effort and risk. Thanks to each of you who has contributed this way!

    Sing
  5. srmny

    srmny

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    I agree with Mark's post #25. I also applaud Alex's post #42 - it was positively poetic. But I could have written (though probably not as well) sunlady's post #31! Thank you all for expressing my thoughts so well - I am having trouble reading today and writing is difficult.

    To omerbasket, I was originally diagnosed with Fibromyalgia but was soon diagnosed with CFS. My CFS doctor says I have them both. After about a year the Fibro pain and stiffness backed off a little and the exhaustion, weakness and cognitive issues got worse. I still get episodes of Fibro. Perhaps sometime we can compare notes.
  6. redo

    redo Senior Member

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    Thanks for the info DysautonomiaXMRV.
    I found this after searching for Light et al http://www.ncbi.nlm.nih.gov/pubmed/19647494
    Very interesting to see that the changes lasts for 0.5 to 48 hours.
    I used to get a strong reaction that came about 10 minutes into exercise and lasted about 24 hours (before fading).

    Do you have links for the B cell and NKC depetion quotes?

    I'd appreciate it, as I think it's important for the understanding of CFS.
  7. ixchelkali

    ixchelkali Senior Member

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    :thumbsup::thumbsup::thumbsup:(what I really wanted here was applause)

    Bravo, well said. That's what I think, too.
  8. Wonko

    Wonko Senior Member

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    I also worry

    it would be nice if XMRV was the culprit - it looks obvious that it is - unfortunately I've learnt that when someting looks so self evident that only an idiot (or someone on a windup) would dispute it, it's normally coz my brain dont work and I've missed something important

    not saying this is the case on this board - it's just my personal experience - the more self evident a thing is, the more certain I am, the more likely I've made a mistake......

    so I worry......if all the reseachers and money go into XMRV and it's found NOT to be the problem where does that leave us? I suspect worse off than before

    so I worry......
  9. Cort

    Cort Phoenix Rising Founder

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    Now that is an interesting take - based on years of tough experience in CFS; the closer you get to it the more it slips away...that's hard! I absolutely get where you're coming from. Hopefully that won't be the case here. XMRV has had its problems but no one delved deeper into a pathogen than that first Science paper. That was the most solid start we've ever had....

    If it doesn't work out I think all this hullabaloo has highlighted a big population of people that need help. Honestly, altho, I don't think it will work for everybody I think it will work out for some people. I think its there and they'll find it and that will be helpful for everyone. That will open the door for more research.

    Say they find XMRV in 50% of people or even 30% of CFS patients; how can you not start to take a longer look at pathogens in general after that? How can you not look at Dr. Lerner's last study and not start to think....maybe there's something in there.......All they have to do is find it in a nice chunk of patients and I, laymen that I am, think that will start to shift things...money will start flowing....CFS won't be such a hands off disease..they will take notice..;).
  10. Wonko

    Wonko Senior Member

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    you have more faith in governments, medical professionals or even people than i do then - and less in history

    but I hope I am wrong........
  11. ixchelkali

    ixchelkali Senior Member

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    redo, I checked your links in response to Doogle's request to know more about the CDC now recruiting for CFS patients for treatment on Ampligen. It did talk about Brigitte Huber's research, but I didn't see anything about the CDC recruiting patients for an Ampligen study. I went out to clinicaltrials.gov to look for one, and the only Ampligen study I could find recruiting was the ongoing Hemispherx study. I only found 3 government-sponsored studies listed for ME/CFS:
    NIH study of cognitive behavioral therapy to treat insomnia in CFS
    NIH study of proteomics of cerebrospinal fluid in CFS
    NIH study of Alternative Treatments of “Unexplained Chronic Fatigue”

    Did I miss the CDC study that Ecoclimber mentioned somewhere?
  12. sarahg

    sarahg Admin Assistant

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    For the record, if it's a study of alternative treatments of "unexplained chronic fatigue", it's not a study of me/cfs. It will be of no use to us.
  13. ixchelkali

    ixchelkali Senior Member

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    I couldn't agree more. But the NIH lists it as CFS research, and presumably it's CFS research dollars being spent on it.
  14. redo

    redo Senior Member

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    ixchelkali, perhaps ecoclimber knows. I only found the part about the HERV-K18.

    Wonko, I think we would be far better off, because there has come a sudden interest for CFS in university schools all across Europe, and the USA after this publication.
  15. shiso

    shiso Senior Member

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    Dannybex, you're not the only one. :rolleyes:

    We are all waiting for the truth about the role of XMRV in ME/CFS, i.e., whether it is causal or not - and more practically for our lives - whether understanding its role will lead to effective treatments for some or all of us. As others have said, I think it is a personal choice how to view scientific developments about XMRV as they unfold, and it is not for one patient to say to another patient how to view the yet-unknown truth.

    Some may have scientific backgrounds or personal circumstances (like multiple family members or a partner getting sick after them) that gives them firm reason to believe in the strong likelihood that XMRV is causal. Others may have reached a rational conclusion from the information that's been made available so far.

    But for the same reason that those who believe that XMRV will pan out and lead to treatment, I think there should be understanding for those who feel that - whether in their own particular cases (e.g. due to a negative XMRV test despite meeting CCC and being severely disabled for years) or more broadly - XMRV may turn out not to be the decisive key we want it to be. I think they (and I am talking about patients, not researchers or others trying to discredit WPI) should be entitled to their opinions too, and to be able to state them. It's a fact that this is a hard thing to do on this forum.

    From an advocacy perspective, I think leveraging the XMRV discovery to maximize attention to and funding for ME/CFS is critical. That's why, even though the science is over my head, I personally support and continue to donate what I can to WPI (and, I will add, CAA), despite my belief that neither organization is perfect. I follow the XMRV and advocacy threads here and elsewhere and try to do my small part. I am grateful to and really appreciate the efforts of scientifically talented patients such as those on this forum who have spent time analyzing the flawed replication studies.

    I want this discovery to provide answers soon, and that is why I speak with my wallet and my actions. But internally I am cautious and for me, I find it easier to deal with all the uncertainty (not only about XMRV, but about my future with this god awful disease) by not getting emotionally invested in XMRV. It's my coping mechanism. I completely, totally respect that other patients are different. I found Alex's post and some others here very compelling.

    Separately, regarding advocacy, after learning more about ecoclimber’s background (trying to secure funding from Microsoft – what a brilliant idea and what a coup it would be if it could be done – that foundation has TONS of money and really smart people running it), I have to say I see where ecoclimber is coming from with respect to the tricky situation we are in right now.

    I think it makes sense to have a realistic view of what it takes to convince the Microsoft foundations of the world (or even our own friends or family who may have ties to do-good/private sector foundations) that they would be making a tangible, real difference in many lives by funding ME/CFS research where the successful, healthy, well-meaning and intellectually arrogant people who sincerely believe they can accurately analyze any given situation put their trust in data points from big names and the medical establishment. Right now, other than the WPI pilot study (which did have the support of highly respected sources, NCI and Cleveland Clinic, but it was still one study), they don’t have a lot of data points to go on.

    I just wanted to make the (now very long-winded) point that I can see how the current state of affairs surrounding creates a dilemma for how to solicit funds and support from these foundations that have a lot of money to pour into worthy causes but which have no clue what ME/CFS even is.

    I don't have an answer to the dilemma (Sorry :worried:), but I do think those funds are worth going after. I don’t think the solution is for patients to stop full-on support to advance XMRV research - if anything, I think it's in our interests to speed the research up as much as possible (while understanding that science doesn't move fast). But I also very much do see the point in keeping alternative avenues of raising funding and awareness for ME/CFS research other than for XMRV alive.
  16. judderwocky

    judderwocky Senior Member

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    even if not everyone tests positive i think we should also be aware that 1) there are going to be many "sub types" of this virus... which implies not only multiple entry points into the human population, but possibly different means of transmission... the phylogenetic trees already compiled show what appears to be between 1% and 2% variability ... this is a FAMILY of viruses not a single one yet.... 2) there are going to be other retroviruses and endogenous retroviral links made as we advance our understanding of the human genom... MLV has been studied for years... they just didn't think humans could get it .... so you can bet a ton of researchers are going to be running testing thousands of viruses on every sick group for the next fifty years.... if you don't make it on the XMRV train, i'm sure one will come along with your name on it... remember this was a big deal because nobody thought these kinds of retroviruses could even touch us...now they're in our prostates, nerve cords, respiratory tracts.... aCK lul.
  17. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    Good thread.

    A couple of points.

    1) Based on my own knowledge, all of the respected CFS doctors seem to fall into three camps.

    Some think it's likely that one or more pathogens (maybe along with genetics) is at the root, and toxins build up in our bodies as a result. Some think that toxicity (as a result of exposures and genetics) is at the root, and pathogens of all sorts colonize opportunistically as a result. And some think that it's "multifactorial," with both certain pathogens AND toxic overload initially being needed in order to start the cycle going downwards.

    I personally fall into the third camp, but it doesn't really matter. The point here is that once you get past the first stage, you've got a whole witch's brew going on. And that means that just fixing one element (toxin or pathogen) isn't going to be enough to bring people to anything close to full wellness.

    I got remarkably well just by addressing the toxin part. But it wasn't all the way well, and the devil's bargain (living an "extreme mold avoidance" lifestyle) hardly counts as being really well.

    Only after I got clear of current exposures did I realize HOW toxic my body is. Unbelievable. Especially since I never realized that toxins were an issue for me at all, until I experimented with Rich van K's protocol in 2007 (after 12+ years of illness).

    I was classic enough Canadian Criteria CFS that I strongly believe that if I don't have XMRV, it's not causative. But even assuming that I have XMRV, I don't think it's going to fix the toxicity problem for me.

    The only possibility is if it somehow repairs a broken detox mechanism. I've yet to hear a convincing argument that it's going to though. (This would be an excellent topic for discussion: whether it's plausible to think this would happen.)

    What does this mean? That those people who think that even the best XMRV treatment is going to magically make them well are in for a disappointment. I've heard of a couple of people get a bit better from antiretrovirals, just as I've heard people get a bit better from other treatments. But if folks want to get to full wellness, they're going to have to get the toxins out somehow.

    And believe me, this is hard.


    2) The media coverage of CFS being a legitimate illness is a risky marketing strategy.

    Short-term, it gives a bit of credibility. But if it turns out that it indeed isn't a key factor, that may turn into a net loss.

    The idea that a lot of people who fit into what I'd call "CFS spectrum disorder" (e.g. who have a lot of the biomarkers....low NKC activation, Rnase-L/LMW Rnase-L, low suppressors, PEM, cognitive dysfunction) don't have it even if it is a factor for the most severely affected patients is problematic from a "marketing" standpoint too. Does this mean that they're not "really sick" after all? What diagnosis are we going to give them, if they don't even get the CFS one?

    I'm not particularly happy about the fact that people I knew many, many years ago have come to me worried that I might have infected them with a retrovirus (which they think means they're going to automatically get something on the lines of AIDS). As Danny reminds us, there are lots of people with XMRV who don't get sick at all. We don't know how XMRV is transmitted, so there's no particular reason to think that if people do have the virus, they'd have gotten it from me. Even if I have it. Even if it's anything more than opportunistic for anybody.

    I don't think that we should suppress legitimate information for "marketing" purposes. But making a big deal out of this for "marketing" purposes MAY not turn out to be the right strategy either.


    3) I may be missing something, but I don't think that it's unethically (from a professional or moral standpoint) to give drugs that have been approved by the FDA (or other countries' governing bodies) to people off-label for any purpose.

    I feel pretty strongly about this, because at one time I was helped TREMENDOUSLY by a drug that was considered dangerous enough to get a black box warning. This was 1998, fairly early in my CFS, and I was having severe mood swings. I tried a wide variety of drugs and approaches, all of which were ineffective or had major side effects. Then I found out from a fellow patient about a tiny-scale study that was going on with the anticonvulsant, Lamictal. It sounded so promising that I got one of my more acquiescent doctors (not the one specializing in psychopharmacology) to prescribe it for me. Miracle cure! No more mood swings at all, for a dozen years. No side effects. Eight years later, the psychopharmacologist had this drug as the #1 on his list of things to try for patients with my symptoms. That's a whole lot of years of my life that would have been even more unbearable than they were just with the CFS.

    (Of course, like ALL my other health problems, this one turned out to go away with mold avoidance. Now I don't need that drug at all. But it certainly helped at the time.)

    I know what it's like to be desperate. I was at that point, late in my active CFS in 2007. I was even more like that in 1998, when I was suffering from both classic CFS and the mood swings, and feeling actively suicidal a high percentage of the time. Having people say that you shouldn't try something because it "might be dangerous" when things are that bad is at the very least frustrating.

    Sweeney Todd: "These are desperate times, Mrs. Lovett, and desperate measures are called for." If people can survive day-to-day with CFS, or manic-depression, or anything else without feeling desperate - or even without feeling like life is pointless - then that's great. But when we get to a point of desperation, or even that our life is slipping away to the point that it's unacceptable to us in terms of our core beliefs about what our time on earth should be like, that's something else.

    I think that those who try things that some would consider to be "controversial," and that are hard, are not only achieving the possibility of gains for themselves but also contributing something of value to our knowledge about the disease.

    The main impetus for my having pursued this trip down the rabbit hole of extreme mold avoidance is not just because I wanted to get well, but because I believe that the process of doing this sheds light on what's happening in the disease. Similarly, Mike Dessin has endured a whole lot of crap as a result of talking about his approach (and neural therapy is plenty painful itself, as I well know from my experiences), but his having done that has given us more knowledge that may be useful in general. Dr. Montoya's experiments with Valcyte may not have proven to be a "cure," but they've shed various light on the disease (e.g. that addressing pathogens early on is more effective than doing so later, that many of the direct effects of the herpes family viruses are cognitive) as well.

    I think the same principles apply to the antiretroviral drugs. Or to stem cell therapy. Or to Rich van K's approach (which, by the way, is not painless either).

    People need to make informed decisions about risks. They need to weigh the pros and cons with regard to their own lives.

    But insofar as they make their own decisions about what to do, as free and consenting adults, with regard to doing things that are not illegal, it seems to me that we should honor those decisions.

    And I, for one, applaud them for their valor.

    Best, Lisa
  18. judderwocky

    judderwocky Senior Member

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    i think the only way to understand the ethics of one form of treatment would be to compare it with others...

    i think the off label use of these drugs would satisfy both the principles of utilitarianism and those of the "principle of double effect".... the problem is that many of the proponents of cognitive behavioural therapy (as a catch all treatment) basically argue the same thing.... ethics in the modern era though really should take issues of power, accountability and oversight etc. into account .. i have difficulty determining if these doctors are creating a financially lucrative situation for themselves... on either side... obviously healthcare is a business either way you go with it... cbt is one kind of expense and antivirals are another...but we can hardly argue that having a drive for profit implicitly denotes that it makes the system immoral... its the usage of the power that we should be concerned about. to me the prescription of these drugs seems to be in good faith, providing alternative treatments to those that have often times gone through several different failed treatments... from a perspective of power, the patient is coming out for the better ... conversely with CBT pushers, i feel the opposite is true, as the this therapeutic lens often times demands a stance designed to limit the expression of the patient, or to redesign their behaviour. patients are discouraged from seeking out specialists, their illness is framed in a very power limited way... this gives me trouble from an ethical stand point... because issues of naming, autonomy, blah blah blah come into play regardless both sets of doctors still have the same levels of oversight and their actions are monitored similarly, and by similar institutions.

    as far as ethics go ... it comes down to what they call the banality of good and evil. evil is most dangerous when it appears to be normal... common... and even good.... and honestly i just don't feel normal any more ;p

    just my two cents
  19. Mithriel

    Mithriel Senior Member

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    I have been giving this thread some thought and I do not think it is fair, or just, to blame us, the sufferers, for being too controversial to get funding.

    We have all just got sick. It is painful to hear from patients who are newly diagnosed as they expect to be treated properly. You know they are in for a rude awakening and don't know whether to tell them or let them carry on in ignorance for a while.

    Put simply, they expect to be treated the way they would if they had any other illness but it doesn't happen. The controversy about our disease all comes from outside vested interests, either institutions seeking to maximise profit or people with their own pet theories. The good research is poorly funded and small scale as the money, what little there is, goes to poorly conducted studies with an agenda. This is not the fault of the patients.

    I have had a lot to do with MS patients. MS is seen as a serious illness and not controversial on the surface, but there is a lot of differing viewpoints on how it works.

    The patients are very into alternative medicine and feel they are entitled to try anything from horrendously expensive interferons to growing their own marijuana.

    They also feel let down by their neurologists and not taken seriously so they criticise them a lot. I haven't paid much attention to their patient charities but I remember feuds and mutterings, people forced to resign and lots of criticisms.

    To sum up, I think we are much like any patient group with a long term illness. The difference is that we have been very badly served by the media who promoted a public viewpoint of us as "yuppy flu" or just plain layabouts and because the psyches took over the illness and widened it into something universal and unrecognisable as what we actually suffer from so making us seem to lie down and whinge where others soldier bravely on.

    The lack of research and funding is not because there is something unsavoury about us "The average doctor will see them for what they are and be disgusted by them" has been said about us, why? It is because we have been maligned and our illness trivialised so that it and us are not seen as worthy of the considerations given to people in our society with the same level of sickness.

    Why we should have been singled out for this is beyond my understanding.

    Mithriel
  20. Navid

    Navid Senior Member

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    great post


    JW....don't know if you are new to board or just changed from another user name...but regardless....i think you are awesome. this post is so wise and thoughtful. so far everything you have posted on the board is very impressive. thanks for sharing all your "medical knowledge" abt the disease and ethical/moral points of view with the us. these sound, calm points of view are really needed around here...right at this very time.

    so not only are you a wise, wise person (who writes really well) but your timing is great too.

    i look forward to reading more of your views.

    sincere thanks:Retro smile::D:D

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