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Am I the only one who hopes that XMRV is not the cause of CFS/ME

Discussion in 'XMRV Testing, Treatment and Transmission' started by dean, Jun 11, 2010.

  1. dean

    dean

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    Am I the only one hopeful that this disease is not caused by a retro-virus like XMRV. I am not sure that that would be a good thing. I understand the frustration of wanting a definite answer....I have been sick on and off for over 20 years. I would like to know the cause. However, unlike so many others here, I can not be hopeful or excited that the cause might be XMRV. Treatment options for retrovirus' historically are very probematic. We will have to deal with problems including complexity of dosing, severe side effects, drug resistance, not to speak of transmission and control, etc, etc.

    I sure hope this disease is fundamentally something else easier to deal with. Just my hope......

    http://en.wikipedia.org/wiki/Antiretroviral_drug
     
  2. Wonko

    Wonko Senior Member

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    probably not - speaking personally I already have the disease - whether it's caused by XMRV I dont know - no one does yet - but if it does then at least I will have an answer and hopefully some chance of treatment in the next decade or so - if it's not caused by XMRV.......then I suspect things will, if we are lucky, not improve for us - if were unlucky then SW will gain an even deeper hold

    but I want to know - one way or the other - and I'll worry about the pitchfork proof, flame retardant clothing (with anti-lynch collar attachment) later
     
  3. Daffodil

    Daffodil Senior Member

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    dean we wont have to deal with resistance too much. this virus doesnt have all the proteins of HIV.

    i agree though..it does suck.. a permanent retroviral infection. i am going through a major depression and having trouble accepting it.

    sue
     
  4. V99

    V99 *****

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    I honestly think none of us want it. Just want a cure.
     
  5. ahimsa

    ahimsa Senior Member

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    Que sera, sera (what will be, will be)

    I learned a long time ago that what I want to happen and what will happen are not always connected. There are some things in life that I can control (at least to a certain extent). There are many other things that I cannot control.

    What good would it do for me to hope that XMRV is the cause for ME/CFS? (or one of the causes, since it's possible that there are multiple factors) And then, if XMRV is the cause, then hope that I have it? And, if I test positive, start hoping that I find some drugs to fight it? If I'm going to spend my time wishing or hoping for something then wouldn't it be smarter to cut to the chase and just hope for an immediate cure? (spontaneous remission or divine intervention, your choice ;) ) All the hoping (or worrying) in the world does not change anything.

    What I try to do instead is read (or at least skim) whatever ME/CFS research is out there and keep up with any new treatment options. So that's my reason for reading about XMRV. It never occurred to me to be hoping for it to win/lose. I'm just watching to see what happens next. I do hope that the increased attention and money for ME/CFS research will continue but I try to facilitate that with more than just hope (e.g., writing letters to various politicians).

    I hope this does not sound too philosophical! I try to put my very limited energy into those few things that I can control - resting, taking my meds, having a positive attitude, connecting with my friends and loved ones, donating to ME/CFS research and advocacy groups, finding things to make me laugh, etc. I try not to worry too much about all the millions of things that are out of my control.

    Hugs,

    Marjorie
     
  6. ixchelkali

    ixchelkali Senior Member

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    I don't think anyone WANTS to have a retrovirus, just like we don't WANT to have ME/CFS. I'd much prefer to find out that it's caused by something easily treatable, like maybe H Pylori; just take a short course of antibiotics and you're cured. But whatever it is, it is. It would be better to know what causes it, even if it's a retrovirus, than to not know at all. At least if it's XMRV there's hope of a treatment.

    The fact is that whatever is causing it, I already have it. Knowing what it is isn't going to make it worse. If I had cancer, I would dread the thought of going through chemotherapy and radiation, but it would be better than having cancer and not having those treatments available.

    I know it sounds as though people are hoping that XMRV is the cause, but I think it's really that people are hoping that at long last we will have an answer, even if the answer isn't good news.
     
  7. Sean

    Sean Senior Member

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    Ultimately I don't care what the cause is, I just want to know what it is.
     
  8. JPV

    JPV Senior Member

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    I don't necessarily hope that it's not the cause, but I seriously doubt that it is.

    Even Dr. Peterson, one of the WPI team members, has gone on record saying that it may just turn out to be a "passenger" to another root illness. However, so many people on this board seem quite selective in what they choose to absorb from the material that they read.

    I can't quite understand why people are so enthusiastic about jumping on this bandwagon anyway. I suppose it's the hope that the cure will come in the form of a single pill that could be popped, instead of some long and arduous lifestyle and nutritional changes that may ultimately prove to be the best bet to improve an afflicted person's health.

    I should also draw people's attention to the fact that there has yet to be a medical cure discovered for any virus. In this respect, it may be better if the root cause is to be discovered as something else.

    Actually, on second though, I do hope this illness is not caused by a retro-virus.
     
  9. Daffodil

    Daffodil Senior Member

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    at this point, i will say i believe 110% XMRV is the cause of CFS. and i was sicker than you could possibly imagine.

    i am horrifed about it but definitely better to be able to improve than live in that utter hell that i was in. now, at least every minute of every hour won't be sheer agony for me! thats a big thing.

    i used to always wish, when i was that sick, that if only i could have 1 good year without the disease and then i would have to die, i would gladly take it. so now i feel selfish wanting more....to be cured completely. i try to remember what it was like before.
     
  10. serenity

    serenity Senior Member

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    i think i accepted a long time ago that what i have is serious, so now i just want everyone else to realize that too.
     
  11. dean

    dean

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    I can really identify with this. Anyone of us knows how real it is, how debilitating, how unwanted. 20 years ago it was impossible to find any understanding. Initially I was definitely in the closet. However, recently, I have found more understanding and acceptance from others, (civilians) I am not sanguine but I feel a definite change over 20 years in others people's attitudes. Many more of my friends and family know how serious it is. Much of it probably has to due with all this investigation into a viral etiology......
     
  12. serenity

    serenity Senior Member

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    so far not a lot more understanding for me, but i just started to fight. 20 years ago i think i had this but didn't realize it was serious. it wasn't until 5-10 years ago that i really realized that i am not like everyone else. i used to just make a lot of jokes about "yep i'm just lazy, haha" & everyone is still sort of used to that. now that i'm not making jokes anymore, well - they are uncomfortable & dont' know what to make of me.
    i just want it all figured out & some hope for a better life.
     
  13. ixchelkali

    ixchelkali Senior Member

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    I can respect your doubting that XMRV is the cause of ME/CFS. Even if the WPI's results are replicated, there are still a lot of questions to be answered before causality is established. Certainly, there are other plausible explanations.

    However, I would appreciate it if you would extend to me the same level of respect. I take exception to having my opinion that XMRV is a plausible cause characterized as "jumping on this bandwagon." I am not hoping for a "cure that will come in the form of a single pill that could be popped." The possibility that a retrovirus could cause or significantly contribute to this illness is not unreasonable, and it certainly isn't magical thinking. Don't you think that it's rather insulting to imply that it is?

    I particularly take exception to your remark implying that my opinion is a result of just hoping to avoid "some long and arduous lifestyle and nutritional changes that may ultimately prove to be the best bet to improve an afflicted person's health." For one thing, I have long since made those lifestyle and nutritional changes, and I'm still sick. For another, you're making assumptions about the lifestyle and nutrition of people with this disease that you really know nothing about. But mainly I resent your implication that I am only seeing XMRV as a reasonable possible cause because I'm looking for an easy out. That suggests that I'm not capable of making a rational, impartial, intelligent of the evidence and basing my opinion on that.

    Can we make a pact that I won't ascribe negative motives to your opinions if you won't ascribe negative motives to mine?
     
  14. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Different take.

    I hope it is XMRV. If it isn't, then I have no hope. I will go back to where I was two years ago, on an island with no food, no one to help and stranded, in a purgatory that never ends and no savior.

    If I have a retrovirus, then I will likely have access to drugs fairly quickly. I have a friend who has HIV. She had a healthy child. She is living full life now. And she even married someone who does not have the virus. In other words, she lives, she functions. I have not asked her lately, but what I remember about the drugs she was taking is that it was a lot like living with diabetes. There was a point where she developed pain, I think neuropathy. But the drugs are much better now. She never stopped working part time. She takes her son to parties, takes vacations, goes to church, etc.

    I'll take that over what I have now - or don't have now.

    Also, if it isn't a retrovirus, then it may be immune system problem purely. I feel that would be much harder to treat, for example, lupus and arthritis are immune system problems and are well-known and common. Yet there is no effective treatment for them.

    If it is genetic, then there will likely be little they can do.

    And with all the research into MS, still nothing that stops the progression of the illness.

    But, HIV people, most, can live active lives.

    I'll take a retrovirus, thank you.

    Tina
     
  15. Robin

    Robin Guest

    I agree totally.

    There's nothing wrong with wanting a medical treatment to an illness. I also take exception to JPV's assignment of moral superiority of dietary/lifestyle changes over pharmaceutical interventions. Why not just do what ever is proven to work? Even with diseases that respond to diet/lifestyle changes medication is sometimes needed. My dad has diabetes. He has made "long and arduous lifestyle and nutritional changes" yet still needs insulin. The good nutrition decreases the amount of insulin he needs, but without insulin he would be fatally ill.

    To the OP: I understand where you're coming from. Even if XMRV does turn out to be the cause of CFS, treatment may not be as simple some antiretrovirals. I don't think the implications are quite obvious yet. I want to know what's wrong with me and have a treatment and it's ambiguous as to whether XMRV would satisfy both of those critieria!
     
  16. jimbob

    jimbob ME/CFS84-XMRV+

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    I agree with tina, ixcheelkali, sickofcfs and especially daffodil on this matter. I've had this for 26 yrs and hope, for the love of everything holy, that xmrv plays a major role in m.e.! i'm so desparate, that i've been on 800mgs of raltegravir a day for the past 2 weeks! XMRV, bring it on!!!!!!!!
     
  17. anciendaze

    anciendaze Senior Member

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    hope and research

    Above objection noted. For myself, I will try to avoid ascribing motives to people I don't know.

    I would, however, like to go on record as hoping our problems are not caused by a retroviral infection likely to stay with us for life. This is entirely distinct from my enthusiasm for research on XMRV. Let me try to explain.

    After decades of watching explanations shift back and forth, without providing me much relief, I'm hoping to get to the bottom of questions about a cause while I still have some life left to live. Considering the range of proposed explanations I've seen, I still think any single explanation is unlikely to stand up very long without modification. Most will be discarded.

    This represents real progress. We have gone through decades of "maybe it is, or maybe it isn't" without resolution. (If you don't believe me, try to think of any explanation which has been completely taken off the table.) At present, the field is definitely moving.

    The whole question of pathogens has taken on new life. In order to rule out XMRV, it will be necessary to show some other cause for anomalies already found. A whole battery of tests for different pathogens has been proposed for the Stanford study. This is, to my knowledge, unprecedented.

    A second aspect is the possibility of limited immune compromise. While frightening in itself, this offers an entirely different take on infectious causes. Many things which were dismissed will have to be reevaluated as possible if this is taking place. Harmless endemic infections can be pathological if the immune system is not working properly. In this case, fights over which pathogen is doing the dirty work in which group of patients may be misdirected. One cause could very well lead to diverse infections in different people. The common factor would be that they are all ill with infectious diseases because of a deeper problem back up the line. At least people are now looking for it. Finding a cause other than XMRV would be great, if things turn out that way. If you don't look, you aren't going to find this.

    A third aspect is the new emphasis on epigenetics. The mere possibility that a retrovirus is turning genetic switches on and off, for its own purposes, has caused new investigation of such changes in this illness. We are seeing the mechanics of illness even if we haven't caught the villain flipping switches.

    This is an entirely different world from the one in which I've had to argue with people saying "it's all in your head". The thing which is in my head now is hope. Even if, worst case, a retrovirus is going to stay with me for life, I can hope for treatments, based on a clear understanding of causes, which will relieve symptoms. Many people positive for HIV are significantly less impaired than I have been.
     
  18. citybug

    citybug Senior Member

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    If only long and arduous lifestyle and nutritional changes worked (maybe for some).
    They used that multi pathogen panel in the Science study. I would love to have that available along with xmrv to treat everything. I wish I'd been able to read that post.
     
  19. ixchelkali

    ixchelkali Senior Member

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    I agree completely. But my GUESS is --that is, what seems to me like the most likely scenario-- is that once someone is infected with XMRV it lies dormant, perhaps slowly affecting the immune system, the mitochondria, or whatever. Then some insult, such as certain viral infections or toxic exposures, trigger XMRV to accelerate its growth and cause disease. Or perhaps, like HIV, it eventually reaches a kind of critical mass where normally benign opportunistic infections start causing disease.

    I've thought right along that even if EBV, HHV-6, mycoplasma, enterovirus, parvovirus, etc are not the cause of ME/CFS, that if for some reason you have an active infection with them, that you're not going to feel well. It seems to me that even if they aren't the cause, treating them would be a good idea.
     
  20. Snow Leopard

    Snow Leopard Senior Member

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    Summed it up in one line!

    XMRV is percieved (by many on this forum) to be the most likely cause and hence the most likely avenue for successful treatment.

    This has little to do with the actual likelyhood of XMRV being the sole causitive factor in a majority of cases.

    Lets be honest though, although no one argues whether MS is psychiatric or not these days, it still has a significant lack of research funding compared to the impact of the disease.

    I think research funding seems to be proportional to fear - and most people don't think they will 'get' CFS or MS etc, hence they don't fear it. HIV/AIDS is a frightening disease and more importantly transmissible, although the fear is greatly out of proportion with the risk of contraction or the impact on society. Cancer on the other hand is highly feared and rightly so; if you live long enough, you will get serious cancer, it is an unavoidable fact of life. But still, the funding for cancer is out of proportion to the impact to society.
     

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