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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Will WPI find the answers for those sufferers who are XMRV Negative!

Discussion in 'XMRV Research and Replication Studies' started by VillageLife, Apr 27, 2010.

  1. VillageLife

    VillageLife Senior Member

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    I have started to wonder, for those who are XMRV positive that will probably be your cause of CFS symptoms.
    But what about those who are XMRV negative, are WPI going to continue to search for what is wrong with those patients.

    Because we could be left with a frightening situation, a huge amount of people that maybe given a psychiatric lable.

    I have something called POTS - postural orthostatic tachycardia syndrome. I have had this since I got CFS, no one knows what causes POTS.

    If I am XMRV negative, I'm not happy to have a psychiatric lable to explain my physical suffering, so I guess I would simply just have POTS and not CFS or XMRV.

    What I'm trying to say is, will WPI continue to fight for the rest of us, if and when they get the XMRV/CFS connection approved.
    Will they continue there research to explain the rest of us ?
     
  2. Andrew

    Andrew Senior Member

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    My impression is they won't abandon CFS patients who are XMRV negative. I just can't remember now where the quotes are that I saw.
     
  3. Otis

    Otis Señor Mumbler

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    I hope that's true, Andrew. I do suspect, however, that unless the floodgates really open on funding that XMRV-based studies will take most of their resources for the foreseeable future. If XMRV doesn't prove to be it for me I'll use my Fibro Dx if necessary to duck the psych lobby. Fortunately I have a good Dr. who isn't doing to throw me to the wolves but I don't know how long I can afford him.
     
  4. gu3vara

    gu3vara Senior Member

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    I wouldn't worry too much about it, perhaps those negative are still infected but we don't know yet how to detect them yet, XMRV seems hard to detect. So perhaps there will be biopsy, , a mutation of the virus or treatments try-out available for those still negative that fits the definition. Ladybugmany is XMRV negative (according to the current tests) and had improvement from antiretrovirals, so there must be something hiding, you never know.

    I think we shouldn't worry if we fit the Canadian defintion, either XMRV will be the cause of all of those or none.
     
  5. omerbasket

    omerbasket Senior Member

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    I certainly hope they would not abandon ME/CFS patients who are not known to have XMRV, and I also hope they will continue their studies for neuroimmune diseases that would not be found to be caused by XMRV.

    However, since the definition of ME/CFS is by symptoms, I think there might be some precentage of people who were given a definition of ME/CFS and actually have another disease - known or unknown to menkind. So perhaps we would be able to say that every ME/CFS patients have XMRV - and that those who were diagnosed with ME/CFS and don't have XMRV (if they really don't have it - not if they have it and we simply can't find it) does not have ME/CFS, but another (physical!) disease. It's also possible that XMRV positive people will be known to have a disease named XAND or whatever term they will decide on - and that ME/CFS patients that doesn't have XMRV will be know to have a disease called... ME/CFS...

    Anyway, I believe in the WPI and have a feeling they won't abandon research about the sick people without XMRV.
     
  6. pollycbr125

    pollycbr125 Senior Member

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    i must admit ive been muddling through all the scenarious too for if im negative .its a bit like being stuck between a rock and a hard place . i cant say im happy at the thought of having a retrovirus but then im not happy as being seen as a fruitcake either .

    so the better of two evils is probably the retrovirus .not much of a choice is it really . also i probably do appear to be a little mad in actually wanting a retrovirus but if it means ill get some kind of treatment and get better than i am at the mo and maybe get part if not all my life back then so be it .

    if im negative i really dont know how i will feel and there are bound to be some of us who are neg. I really dont think the WPI will leave these people behind . and i think if xmrv does pan out this will lead to further research into related avenues which will probably find a cause for the rest .the fact xmrv has been found has filled me with hope as this has definately opened the floodgates for further research into this diseaese and im hoping will actually become the nail in the coffin for the psychiatric bunch .

    in the meantime i will wait patiently for further developments . it was never going to be an easy ride . hopefully the invest in me conf in may will enlighten us more as to how things stand at the mo . theres obv been a lot of work going on in the background that we are unaware of as yet .so for now i know its hard but lets try and keep positive . Im so glad ive become a member on here as i know regardless of which result i get i will have somewhere to turn and folk to support me and be there for me . and i will be there for others too .

    apologies for waffling brain isnt quite in gear but hey when is it ever :eek:
     
  7. JPV

    JPV Senior Member

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    Or not. Do you people even read the press releases about this discovery?

     
  8. JillBohr

    JillBohr Senior Member

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    Thank you JPV for the sobering reminder that we still know so little about this retrovirus. I do not know how scientists will prove that XMRV causes ME/CFS and prostate cancer. If there is an antiviral or vaccine that would reduce XMRV replication and the patient gets better, would that be one method of proving that XMRV is a causative factor and not just a passenger virus?
     
  9. gu3vara

    gu3vara Senior Member

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    It's still the working hypothesis of WPI that XMRV causes CFS though, that 6 months after the initial press release. Of course, they have to be prudent otherwise they would lose all credibility in the scientific community.

    So far, history taught us that all exogenous retroviruses are serious bugs, causing AIDS and cancer. So If the (good) studies consistently find it in patients, we can be pretty confident that treating it will improve our health, causal factor or not. At this point, any help is welcome.

    We don't know yet the cause of multiple diseases like MS, that doesn't mean that shouldn't be treated. You can be sure that drug company won't give up the opportunity to give us their expensive drugs...
     
  10. usedtobeperkytina

    usedtobeperkytina Senior Member

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    often, cause is not proven until treatment is proven.

    You can theorize cause and effect concerning numbers and seeing the way the virus works in cells. But often, until you eliminate it or castrate the bug, and then when you see symptoms disappear and biological processes return to normal you can say the bug caused the illness.

    I read that somewhere on the Internet. LOL

    Tina
     
  11. ukxmrv

    ukxmrv Senior Member

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    Villagelife,

    If XMRV does turn out to be the cause of CFS and ME, then you will have a huge group of people on your side and ready to fight your corner. No one will ever forget what being dumped with the label CFS and left to rot was like.

    I really hope that the WPI and the researchers understand this.

    I am XMRV+ and watching all developments. I won't be walking away.
     
  12. dannybex

    dannybex Senior Member

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    Quoting Dr. Mikovits...

    Here's a quote from Dr. Mikovits when asked about gradual onset patients, that suggests that other factors may be involved:

    Question: Is there differences between – because you’ve got a big population of patients with sudden onset and then you’ve got a big population that had gradual onset. And a lot of the gradual onset patients are worried that “Maybe I don’t fit this equation.” So what would you say to that?

    Judy: That little bump is smaller, so it’s not a huge burst. So that it was little insults over time. I think, for me anyway, I know only a handful that I’ve looked at, that I know the patients and I know what the onset was. But the gradual onset there’s no real difference between – it just depends on that environment, what the other triggers and events were that spurred it on. So I don’t see if you are gradual onset, it doesn’t mean that you might not be infected as well.

    http://forums.aboutmecfs.org/content.php?37-Section-6

    I think as anxious as we all may be that XMRV is 'the' answer, it's probably a good idea to remember that other factors could be involved, and especially that more 'healthy' people have XMRV than those with ME/CFS.
     
  13. HopingSince88

    HopingSince88 Senior Member

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    Dannybex-I think this is a really good point...from more than one perspective.
    1) If somewhere between 2-4% or maybe more of the population has this rv, then it could be seen to some as a 'ticking-timebomb'
    2) On the other hand, 2-4% of the population has the rv, and aren't getting sick...what can we learn from their systems to help us to better control the illness in those that do get sick.

    It sure is one heck of a mystery.
     
  14. gracenote

    gracenote All shall be well . . .

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    This is why I'm disappointed that the CFIDS Association's BioBank is screening out gradual onset patients to begin with.
     
  15. BEG

    BEG Senior Member

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    Dannybex, would you please rewrite Dr. Mikovits' quote so it makes sense?

    End of the month, I have a little money to invest. What will be the highest R.O.I. in my remaining lifetime? The stock market or WPI? I'll take my chances with the stock market and maybe have a comfortable old age while WPI is still studying XMRV.
     
  16. alphahusky

    alphahusky

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    Yeah, we people do. And the last quote:



    "There is still much that we do not understand," including whether people with either disease just are more prone to infection, cautioned Tufts University microbiologist John Coffin in an accompanying editorial. Still, "further study may reveal XMRV as a cause of more than one well-known 'old' disease."

    The jury's still out.

    I don't think retroviruses are usually "passengers," but say they are. Doesn't mean that anti-retrovirals won't help improve our situation. I was on acyclovir for awhile, and it definitely helped. It was when I had to stop seeing that doctor for insurance reasons, and I had to cut down and then stop it, that my body went back to being basically non-functioning. I ended up losing my job, that I'd held for some time though was in danger because when the doctor cut back on the acyclovir, I just started getting sick with one thing after another, so because of sick days I was already on the chopping block. Taking care of my daughter is pretty much more than I can do. You bet when my current pregnancy is over, I'm going back on a lot of meds I was on before that helped. And if anti-retrovirals help, then I will go on them. I also took Valcyte very briefly but that same doctor was afraid of it, and my insurance wouldn't cover it at a dose suggested by Montoya. I understand that many turned out to not have been helped by it, but I have significant cardiac symptoms (and POTS and NMH) and Valcyte was definitely doing something. But three weeks in, he stopped it and refused to put me back on Acyclovir.

    If I don't have XMRV, which I doubt because for me, I got this abruptly with Mono (though I think I was exposed with a vaccine a few years before as my immune system started showing problems, and while I got sick more often and "weirdly" I didn't consider myself sick at all. But after Mono, I just never recovered and I date the illness from then), and in the early years I matched AIDS patients' symptoms 1:1. If there is no retrovirus causing this, then there is something else very seriously wrong. I mean, to this day, 25 1/5 years later, I still get night sweats frequently. I mean so bad, the bed is soaked. My glands are still swollen all these years later. So if a retrovirus is not causing this, if XMRV is not causing but is a "passenger," I still want some treatment for it.

    The 4% or so of people who have XMRV and no symptoms may develop them later on. Just as Epstein-Barr can cause just a "cold" in a lot of people, it can cause severe Mono, as in my case. I would be willing to be the 4% without symptoms are like the small number of people with HIV who don't get sick. But maybe, somewhere down the line, people with XMRV may get some kind of cancer.

    The jury is still out.
     
  17. dannybex

    dannybex Senior Member

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    I understand Brown-eyed Girl. I had to read it a few times myself. :Retro smile:

    But that's a direct quote...all I can say is at least to me, it suggests that she believes that other factors or 'triggers' come into play in order to develop ME/CFS...at least with gradual onset cases.

    Gracenote: I didn't know that about the BioBank. That's really stupid IMHO -- leaves out hundreds of thousands, if not more, with gradual onset.

    When reading personal histories of PWC's, it seems like quite a number of 'sudden-onset' cases often had many hints or warnings that something was definitely wrong, before they then finally crashed big-time with a virus, or some sort of infection. That would suggest it's not so black and white, and that perhaps there are many who's onset perhaps might be better defined as 'gradually sudden'.

    :confused:
     
  18. gracenote

    gracenote All shall be well . . .

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    Here is the first criteria for inclusion in the SolveCFS Bio Bank.

    http://www.solvecfs.org/SOLVECFSBIOBANK/CURRENTSTUDYCRITERIA/tabid/117/Default.aspx

    This has been discussed on this thread, SolveCFS Biobank Beginning, although I think my concerns are in the minority. (The initial language of the criteria was altered from what was originally presented in the beginning of the thread, so you will need to view the newer posts.)

    I've gotten off topic here. Back to the main discussion.
     
  19. Otis

    Otis Señor Mumbler

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    We're all just as sick, have the same darn diagnosis, and how we got here shouldn't be a discriminator here.

    I expressed that dismay when I finally learned this. The official answer appears to be that the initial studies pulling from the biobank were using that ("no gradual onset') criteria so the biobank followed along and left out gradual onset due to "limited funding". Then as money became this and "other" restrictions would be lifted as wider focused studies come along.

    This is bass-ackwards to me. Let those creating studies pull what they want, don't limit their options right out of the gate.

    Studies tend to have follow-ons which use the same cohort and other studies may choose to use this "cohort" because these first studies did for the purposes of comparison and the money for grants may follow. This can leave gradual onset patients out of research for a good deal of time to come.

    This restriction, by definition, means comparing patients by onset type is impossible.

    The CAA has done us a large disservice here.
     
  20. Parismountain

    Parismountain Senior Member

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    "This is why I'm disappointed that the CFIDS Association's BioBank is screening out gradual onset patients to begin with. "

    Yeah I just learned yesterday they are screening out CFS patients who are males without pain. This is suppose to be a pretty well known subset of CSFers. I go to one of the four docs who screen for Biobank and prior to yesterday I was looking good as a candidate but not after my doc visit yesterday where I was excluded.
     

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