Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
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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. Ernie


    The fact is you don't get better with this illness that's the point. I have tried diet, excercise, CBT, and every other treatment under the sun. Guess what? Nothing mattered or made one bit of difference. My father has Parkinson's and my mother MS. How should they get better? My mother and I are both XMRV +. Retroviruses don't go away. Although some may be trying to rename and rediscover it. I've had the illness 20 years and, I still work full time. So you can't use the lazy approach either as a blame. And I am very thin and not deconditioned. What now do you have to offer for our treatment? Just try a little harder?
  2. ukxmrv

    ukxmrv Senior Member

    Well said, Ernie.

    I've tried the lot and some things made me much worse or wasted valuable time/energy.

    If diets etc and easy things like lifestyle changes could really cure this disease we wouldn't need this group - we'd all be well.
  3. Waverunner

    Waverunner Senior Member

    I agree Ernie. I think that JPV doesn't really know what CFS is. To claim that PWCs can be cured by a certain diet (unfortnately he doesn't even tell us about what the diet consists of) is not very trustworthy.
  4. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    I personally dont think anyone has to fear that as as long as the WPI has their hearts in the right place, the patients will always be wanting to support them.
  5. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    I agree that some seem to have over focused on XMRV but the thing is, they may of needed to do that to give them some hope for a while or whatever.

    As to what if XMRV turns out not to be the answer.. Thou I believe its possible and believe this illness may be caught, I've never pinned all my hopes on the full culprit being XMRV (I think that if any of our puzzle, it will turn out to be only part of it). I actually still wonder if I'd like that to work out or not as after all its a retrovirus.. which may be very hard or impossible to get rid of. Do I want something maybe impossible to fix just to have an answer to what I have? It would be great to find a cause but I dont know if I want it to be XMRV.

    Many different things have looked promising throu the time Ive had CFS. They used to think EBV may of caused it, HHV-6A was another possiblity (as far as I know, that hasnt been ruled out).. so XMRV is just one of many different things which has looked hopeful. (The long termers are used to seeing the CFS mystery possibly close to being solved and then seen things all fall throu).

    What will I do? Well I will just continue on as I do now.. trialing one thing after after in the hopes of something bringing a bit more improvement to how I are now. (currently working on fixing essential trace mineral deficiency.... next I'll focus on hormonal issue or the mold issue).

    A big group of us has never stopped focusing on the fact that CFS in general is under researched.
  6. toddm1960

    toddm1960 Senior Member

    Rochester, New York
    Ernie you said it all, I'm right there with you......we just don't get better. I'm so tired of hearing we're still sick because we don't try hard enough, and the thing that pushes me over the top and keeps me off the forum for a few days is when it's other memebers saying it. Oh well I can't help but think we're reliving 1991 over again, and I'm afraid I won't live long enough to see the next retrovirus discovered.
  7. ukxmrv

    ukxmrv Senior Member

    If XMRV doesn't work out I wil still respect and support the WPI. The next big thing may come from there as well.
  8. insearchof

    insearchof Senior Member

    Hello Tania

    Others have overly focused have they? But not you. You were more sensible being a long term sufferer who knows how these things pan out.

    Sounds just as judgmental and arrogant to me to push your own political agenda as part of the" big " group that has never stopped focusing on the fact that CFS in general is under researched. And how effective has that been by the way in the last 25 yrs? You seem to have overlooked the fact that XMRV has been responsible for a lot of renewed interest im CFS by the scientific community or didn't you see the SoK conference?

    This is the same political issue and concern addressed by snow leopard and some other Australians on the aussie advocacy thread who do not want any reference being made to XMRVon 12 May 2011.

    Isnt it possible Tania that you are projecting your fears around XMRV (as expressed above) to close down awareness raising on the matter?

    Irrespective of whether you want XMRV to work out out or not, it may not change the fact that you may have any one of a number of retroviruses and it may or may not be the cause of CFS but one of a number of co infections and given that, it does not matter what you try thereafter, you will not get well if it is not specifically treated. If this dies prematurely on the vine, you may not know and or not have access to effective treatment specific to this particular retrovirus.

    I love the arrogant dismissive tone of your opening give them hope for a while " or whatever"

    Your post is all about you and by extension the CFS community, though I recognise in fairness to you, that the question raised in this thread required a personal responce. There are a number of reasons I have been"overly focused "on this matter including the following:

    *infectivity and health of those I love

    * infectivity of the general population

    * babies being born with the retrovirus and consequently, children not knowing a life of health

    *the fact that retroviral associations and viruses have been found, isolated and grown in CFS population on 3 separate occasions by three separate parties and yet the RACP guidelines on CFS in Australia state that there is no retroviral association with this illness

    * there are many similarities between AIDS and CFS which have been acknowledged in scientific research and written about by medical investigative journalists.

    My self interest is last on a very long list. Being overly focused to give me hope is not even on my list. I do not need personal hope in so far as my own illness journey goes at this stage. I already have it, but I certainly know that there are those of us here who need it. I know that there are others who feel the same way I do and have been " overly focused " for the very same reasons.

    Moreover, we want the public to know not just because of it's association to CFS but because we would not want anyone else to have to live with a chronic illness of this nature or those associated with the XMRV virus in mammals and other animals.

    Right now the Australians are looking very selfish and self interested.

    Oh and for the record, I am also a long term sufferer and have never pinned my hopes on XMRV being the cause of CFS. I do however believe it plays a role, in a sub set of patients and for that reason needs to be fully explored. If confined to a subset it is also important to learn why.
  9. Bob


    England (south coast)
    It's a question that I asked myself recently, after reading about all the recent research which suggested contamination.
    I came to the conclusion that it's too soon for me to properly consider the answer, because there's still so much XMRV research to be published and carried out yet.
    There's a lot of high profile studies being carried out this year.

    I'm relatively new to ME (7 years), so I don't have much awareness of the history of it.
    But it seems to me that more has happened for the ME/CFS community since the discovery of XMRV than has happened for ME/CFS for many years.
    I don't know if I'm right about that?

    It's hard for me to tell, because it might just be my own awareness of ME/CFS research that has increased, rather than the actual research, but since the discovery of XMRV in ME/CFS patients in late 2009, the profile and status of ME/CFS seems to have increased, and the profile of ME/CFS research seems to have increased.
    So I wonder if the XMRV story has massively improved the outlook for all of us, whatever the outcome?
    And so I think that focusing on XMRV has not done our community a disservice at all.

    I have personally been investing a lot of hope, and a lot of interest, in XMRV being the answer for me/us, and I have found that helpful for me.
    It was an unconscious thing: I didn't decide to become so interested in XMRV, and I didn't know that it would be helpful for me, in terms of hope.
    It just happened.

    I have been a bit worried that if XMRV came to nothing then I would feel quite devastated, dejected and empty for a while, at least while I adjusted to the news.
    But if XMRV doesn't work out, I believe that it has already led to other important research that will keep our hopes alive.
    I'm sure that Judy would, for example, search for other retroviruses.
    I think also, Judy intends to trial immunomodulators for ME patients, at the new WPI clinic.
    But there is also other promising research in the pipeline, such as the proteins in the spinal fluid.
    I think there is so much non-XMRV research that is likely to flourish over the coming few years.

    But like I said earlier, I think it's too early to look away from XMRV yet.
    It's probably about a year too early to have any decent insight into what the outcome of the XMRV research will be.
    There's tons of very important research in the pipeline.
  10. Cort

    Cort Phoenix Rising Founder

    I will keep doing what I am doing - which has been exploring all sorts of mind/body stuff over the past 3 years and which is slowly progressing for me. I know I am in the 'anxious' amygdala reactivated (fear) unable to calm down subset. All I have to do is watch my breath shorten and my body tense up 100's of times a do to realize that.

    I don't think I am in the viral subset (unless XMRV works out and then I am) - unless the pathogen is in the gut.... I'm in the always aroused subset and I am slowly turning that arousal down and feeling more relaxed and better.

    I will also start trying new things...Rich's program, for instance, because I think my body - which rejected every positive treatment that lifted my energy up - is more ready for that now.

    I will also continue following some of the fascinating other research going on from the Light studies, to the Brodericks immune pathway studies, to Klimas's cytokine and CD26 and NPY studies, to both Natelson's and Baraniuk's spinal fluid studies, to the Lipkin and Montoya pathogen studies to the pathogen studies.....for such a small research community there's just a ton of interesting stuff going on

    Baraniuk said that he thought with $20 million dollars you could figure this thing out and I almost believe him...Broderick just scored a crazy big exercise study.......that is going to be an intense study....There is alot happening with a little money...Don't anyone dare give up if XMRV doesn't work out :)...
  11. Bob


    England (south coast)
    Yes, that's an exceptionally interesting one that I'm going to keep a close eye on.

    BTW, does anyone have a link that describes exactly what they are doing for this study?
    I've read something about it somewhere, but now I can't find any info on it.
  12. markmc20001

    markmc20001 Guest

    I interpreted the latest SOK by John Coffin as being Coffin has found XMRV. He is on the same page as WPI and Alter/lo that XMRV is real. XMRV HAS "worked out" to some extent. It has been identified by the WPI in the published science paper. It has been confirmed by Lo/Alter et al. Now even John Coffin confirmed XMRV exists and is real at the SOK the other day.

    John Coffin just verified XMRV is real, but doesn't have a published study, and wants everybody to take his word for it. He wants everybody to take his word that the man-made XMRV he has found has not escaped into humans? WPI and Alter/LO are claiming that XMRV infects humans and is in the human population going back into the 1980's from blood samples collected by Dan Peterson(and probably others) through the years.

    How can John Coffin prove that none of his lab workers never got infected handling this man-made XMRV? Seems like there are more questions about who is infected now. Lab workers, general population. All this need to be ferreted out. But I feel we definitely are getting closer to XMRV working.

    It seems to me we are making progess, we have three scientists all agreeing XMRV is real and has been found. In fact it has been proven to be created in a lab.

    The only disagreement seems to be if humans are infected with XMRV. WPI, and Alter think so and have shown people have antibody responses to XMRV. Coffin disagrees but wants to drop research.(dropping research into the biggest retroviral find in years seems careless and unscientific to me.) Right now it's 2 out of 3 think XMRV infects humans. Pretty good odds to me.

    I strongly disagree with Coffin it's time to drop XMRV, and think we are a little closer to proving XMRV has worked out.
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    Cort, i would say that u do fit the viral sub group but just expressed in the inflammatory cytokine pattern. Im in that tired but wired group and have an immune pattern that shows im fighting something and also have poor nk function as well. Have u had lymphocyte sub set testing, nk function tests done and other immune tests done?

  14. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    Ive no idea how you've percieved my post as you've done.. you've twisted everything and havent read it in the light it was posted in.

    My post said "As to what if XMRV turns out not to be the answer.. Thou I believe its possible and believe this illness may be caught, I've never pinned all my hopes on the full culprit being XMRV "
    I dont know how you've come up with that I think I know how things will pan out.. as Ive not a clue.

    I dont have any agenda and dont understand your empesis on the "big" part of your post.

    What's happening on 12th May? Ive no idea why you've directed that comment my way... unless you are trying to attack Australians??

    All i can say to that is WOW... im gobssmacked. Ive never said or done anything to close down XMRV awareness and in fact done things to try to raise awareness including phoning two news station when the news of it came out to ask them if they'd like to do a report. I put equal focus on XMRV just like I do with any other new info coming out. So what that I dont push it above other things which could be involved in CFS/ME be it methylation issues or whatever. I dont understand your issue with me and why are saying things which arent true about me. You are reading stuff into things I said which isnt even there.

    Im well aware of that and strongly support Judy Mikovits and others work.

    ok here i can see how someone could of taken it the wrong way... It was just the way I speak thou that got taken the wrong way and had it been a real life convo you may not have taken it the wrong way as you would of got the tone/expression it was said in. The word 'whatever' was used to save my having to give a lot of other possibly reasons and save me having to theorize about other reasons.. so term "whatever' was used as i was trying to keep my post short. It wasnt said in malice or an egotistic thing. I didnt want to go into long theories of other reasons as my post was directed to the original poster.. who said "It seems to me that many are too emotionally invested in just a single horse in the race."

    What you have completely missed is the intent of what I said... I WAS TRYING TO STICK UP for those who are emotionally invested and hence trying to explain to the original poster that same may need that to get them out of a current black hole. I was hoping some understanding towards those would be gained. It wasnt said out of ego or arrogence..but caring towards those of us who have been left feeling very desperate due to the CFS. I dont think its fair to judge those and hence I try to get people to think about it and why people may be doing something instead of just thinking that they shouldnt be doing it. (hence that part of the post)

    and sorry you thought i was being dismissive.. when I was just trying to stop my post from going on and on and being long as I know many with CFS have a hard time reading long posts so I attempt to keep mine short (which I do fail miserably at as I do find it hard to keep posts short).

    ??? this just left me even more confused as you just said exactly what I was saying but in a different way.. there are those of us who need to keep up hope. (So i really dont understand your arguement with me, you say it yourself but got offended when I say it)

    I dont know why you are attacking all Australians. Yes right now the Aussies have a thread on this forum cause we are concerned about our leaders here and what they are proposing.. but I dont understand why that would be a reason to attack us for having interest in what is happening to us here in Australia. (confused as I'd thought you were an Aussie yourself)

    touche (i hope that is the right word. you are thinking just like me... but which dont matter as there is no right or wrong here whether someone has their hopes pinned on it or not.. its not something I judge someone for).

    please dont talk to me in future as I dont need personal attacks, I already have too much in my life which puts me under a lot of stress. I come here to learn and share
  15. Cort

    Cort Phoenix Rising Founder

    Its been a long time since I've been able to get any extensive testing done. I have a couple of bugs in my gut, my EBV was high but nearly as high as Lerner or Dantini thinks it should be to warrant concern, I was XMRV positive, I have low cortisol, virtually no growth hormone, high spinal fluid pressure (but not many other problems with the spinal fluid). I passed a tilt table test (but felt terrible during and afterwards), my MRI shows some weirdness....... I've never had NK cell or RNase L tests done....I had gradual onset - over a couple of months - so not that gradual but no flu-like onset... not much that really sticks out...
  16. Sean

    Sean Senior Member

    I don't recall anybody saying it should never be mentioned.
  17. insearchof

    insearchof Senior Member


    It may have helped if you had read my reply to Snow leopard earlier in this thread, before beginning with the opening line you used and the terminology in it. You either did not or did not appreciate the sensitivity of the matter or did not care. I have no idea which, but it certainly set the tone and sent the wrong message.

    As for twisting things, I dont think I did that at all. I summarized what I saw based on the content presented.If you want to talk about twisting things though, that could equally be said of your reply.

    As for the intent, I am not a mind reader - but it is a good reminder that I should ask or try to find out first.

    As for saying things that are un true about you, I did no such thing. I don't even know you which is why I asked you a it possible that etc.

    I have heard it said too many times here now, that we need to move on from XMRV and that people have been overly focused on it when there are other areas of research that need addressing with the same people suggesting that those who are overly focused on XMRV are pinning all of their hopes on XMRV as the cause. And some of these people also say "haven't we seen this in the past, X was said to be it and it wasn't." The point I was making, which you seemed to be confused about, was that not all of us who want the focus on XMRV to continue are doing so on or solely on the basis of personal hope. There are much larger considerations at play not simply personal hope.

    Tania there is more than one thread running re advocacy issues relating to Australians. I mistakenly believed that there was some support here amongst Aussies for an XMRV focused May 12 campaign but, found out quickly that was not really the case. Rather, I discovered that the emphasis was on promoting CFS generally and the fact that it had generally been unfunded and researched. Maybe such individuals belong to the big group here you referred to?. I do not disagree with advancing and promoting general research, so long as XMRV is included there, (though I think it is a mistake not to make it the focal point right now) but it does not currently seem to be....with fears being raised -that some how it will over shadow other areas ( which it might do in the interim) or that the science is not clear (there are certain elements that are however) and strange notions that to mention it will result in a loss of credibility or as Snow Leopard suggested, have us labelled as the boy who cried wolf within the scientific community. Ironically, in the USA and elsewhere, it has done just the opposite, stimulating scientific research in the area and in CFS generally for the first time in many years. I don't understand that analogy, as that suggests a falsehood and promotion of XMRV would be based strictly on facts known to date.

    I am Australian and frankly I am appauled at how the CFS community here has done nothing to actively raise awareness on XMRV. That might change as very recently I saw notice of a patient advocacy group that has posted a note on the Vic Societies web site. The main orgs in Australia have remained mute. They post news in the form of articles on XMRV but have done little else from what I can see (one awareness raising poster, but I am not sure where or if it has been promoted). Yet, they have no trouble issuing press releases on other matters, like the PACE program in the UK. Where are the press releases on XMRV? They have had oodles of material (as evidenced by what is posted on their site)over the past 2 years to draw from. Not even a word on the matter in the form of a message or opinion posted on their web sites. Members have no idea where or what they stand for, in regard to XMRV or how much importance (if any) they have with regard to the matter. Have I missed these? I dont think I have, but I would love to be corrected on this matter. We are left guessing, and the impression being given in light of the media release on the PACE trial, and none in relation to XMRV, looks like there is selective advocacy at play. Being Australian, does not mean I have to agree with the views of my fellow Australians, or what is taking place in Australia, be it on XMRV or any other matter.

    This is not a personal attack. I have never had a personal exchange with you ie in Chat or PM. It is an attack on sentiment. I am quite happy to write this off as a mis understanding - now that we both have made our positions clearer. If however you don't like that suggestion or my comments then I guess you can use the ignore function. I assume they have one here.

  18. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia

    This may surprise some people, but I do not believe that XMRV causes ME/CFS. I do not think it is associated with ME/CFS. Here is what I do believe in:

    1. XMRV is a real virus. This has been acknowledge from almost the beginning - do recall that the reference sample used in many studies is an XMRV clone. How can you clone something that does not exist?

    2. There is a high probability that it is associated with ME/CFS. Contamination arguments I will again address later in this post.

    3. There is a strong possibility that either XMRV causes ME/CFS or induces an immulogical response that is itself ME/CFS. If XMRV can do this, then why can't other agents, or other agents in combination with XMRV?

    Now, getting back to contamination, the most plausible hypothesis I can come up with, in the context of my limited understanding and with limited publication of relevant data is this:

    1. XMRV might arise from recombination of two pre-XMRV variants.

    2. This most probably did not occur in the cell line.

    3. This might have occurred at an unspecified time, probably earlier last century.

    4. The cell line was probably contaminated from an XMRV infected lab worker or other common infection source, possibly even another cell line.

    All data explained, but as usual nothing proven. It is a stretch I admit, but to paraphrase Sir Arthur Conan Doyle, when you have eliminated the impossible, whatever remains, however improbable, must be the truth. I have a strong suspicion that XMRV is again going to prove that nature is capable of surprising us in many ways.

    So I wont have a problem if XMRV is not the cause, or is not even associated with XMRV. There is a great range of good research at the moment, and any of it could lead to treatment. XMRV as a cause of ME/CFS is a working hypothesis. It is still the best fit for the data. It needs to be investigated until someone can prove it is not a viable candidate. Should this happen my focus will just move on, no drama. In fact I will be relieved - having a retrovirus is not my idea of a good outcome.

  19. SOC

    SOC Senior Member

    You go, girl! Stand up for yourself like a woman! :victory: The personal attacks and bullying around here are getting out of hand; I'm glad you didn't let it get you down.

    FWIW, I've found the Ignore setting to be extremely helpful in these situations. ;)

  20. Sing

    Sing Senior Member

    New England
    Hi Tania,

    My small contribution is that May 12 is CFS, or ME-CFS now, Awareness Day here in the USA. I am not sure if it is observed in other countries, but over here local groups try to put on awareness-raising events.

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